Today I Feel Exceptionally....

resting on the Rock

2012-01-31T13:09:00.001-06:00

I guess just about every Lyme mom or dad has to come to this part of their life at some point or another. Ours is rearing it's head now. We've put it off for a year just watching and waiting and taking copious notes and getting no answers from our regular doctors (at no surprise to me).

The more I've learned about Lyme, the more my husband and I have been convinced that both our children probably have the bacteria in their body. But the wisdom of my Lyme doctor told us to wait....watch...."you'll know". So that's what we've been doing. I'm not one to jump up and take my kids in to the pediatrician or ER for every little thing, so maybe this has been a bit TOO long in waiting.

Our oldest has definitely shown signs and symptoms for the last year or so and we did get her tested. Tomorrow we fly to D.C to have our appointments. Mine, a regular check up (if anything is "regular" about Lyme), and my little darling, to be diagnosed (or maybe get a clean bill of health....I hope!!!).

So please pray for our appointments and pray for Matt and me as we are resting on the Rock (our God) and just hoping against all hopes that our little girl somehow did not get Lyme disease in utero.

Thanks! I'll give an update when we get back, but I will say that this blog will not be about my daughter. It shall remain almost solely about my joys and struggles with Lyme. Your faithful prayers deserve an answer about my little girl, though, so you will get that!

like I have a second wind

2012-01-25T14:00:00.000-06:00

....after seeing this picture:

Via

Keep on going! Just around the corner might be your sparkling new, WELL beginning!

breaking for air

2012-01-23T20:19:00.000-06:00

I was feeling fairly good for it being my first week of meds last week and then my little one showed some signs of a minor (but could be major if not taken care of) infection. I thought our pediatrician would tell us to come into the office and do a quick test and then send us home with antibiotics.

I was wrong. Their office was just closing (at noon!) so they told me to go to the ER. All of the sudden I felt dragged down with the possibility of pulling along two little monkeys in the germ infested ER.

Thankfully my husband was able to get off early and take our oldest with him since they had to go to AWANA with her that night anyway. I thought it would be a simple ER visit with the little one and so I packed for such and held her.....for some time....and then it all started crashing down.

Poor thing did NOT have an infection like I thought but had something else entirely. It wasn't all together terribly serious but it was enough to warrant an admission to Children's Hospital overnight and for the next day. So from noon to midnight I was comforting a very uncomfortable little girl until my husband could arrive to take over. And during that time I was very concerned for the little wee one and mentally trying to figure out where our oldest should go overnight. All the details were worked out on an almost-dead cell phone. That is a pile of anxiety!

And by the time all the blood was drawn and I.V was placed and baby was calm and at peace that Mommy and Daddy were by her side, I could feel myself needing to just remove myself from the place and re-charge. I would have stayed overnight with her but the wisdom of my husband and my gut feeling were both telling me that I needed to go try to get sleep in my own bed to be ready for round two the next day.

And so I did. When I hit the bed I was shaky and weak and in pain. The pain, I think, was mostly from holding my little girl all day and in all different positions. I took my evening meds and slept.

I got up early to try to go relieve my husband before it got too late into the morning and by the time I sat through traffic to get there it wasn't as early as I had hoped. But things were good. She wasn't ready to be released yet, but my husband had gotten rest and so had she overnight. Good news. He told me to figure out what needed to be done that day that couldn't be rescheduled. One thing was a routine doctor visit for my eldest.

So I did that but raced through it and raced her back to her gracious babysitters and was anxious about the littlest. When I got there she had done what she needed to do to even think about getting released so we were all a bit less apprehensive. She was happy to see me but now was also more perky and was needing of someone to lean over the hospital crib and be with her. It hurt my back so! But I wouldn't have NOT done it in a million years!

It was so nice when some of the tubes came out and I was able to sit down and hold her! We were finally released and our little girl was as good as new. We took her home and felt exhausted; both of us. I felt so sore, but still, I felt it was from all the holding and uncomfortable chairs. We've been catching up on exhaustion for days.

It's been 5 days since that all began and I would say the last two days, even though at home, have been really tough on my body. I tried a mud bath detox (more on that in another post) but ended up feeling awful the next day. When I went to bed last night I had that feeling where all your organs seem to be inflamed and it took me a while to get into a good deep sleep.

This morning was the first day that I felt I wasn't drowning under water. Whew! Thank you, Lord! I started week 2 of antibiotics today.

Even though I've had some down time and feeling pretty bad, I'd say I'm still thankful that with how much stress all of the long weekend was on my body, I'm bouncing back a lot faster than I used to. This type of deal a year or two ago would have set me back 2 weeks at the least.

Good job, immune system! You're learning....and that's precisely what we've been trying to teach you.

I sometimes wish that I could "speed heal" - no distractions, nothing - except the meds and me. I sometimes wonder what it would be like if maybe I could just heal without the stresses of life. But that would make me a hermit, right? You know what? Healing that way would probably be a lot harder and so much more discouraging.

The way it is now, even though there are set backs and things might not be going as fast as I'd like them to, at least I have loving friends and family to cheer me on and pray for me. I get great cheer-me-up interaction with my silly kids and funny husband. I think this is the way to go to heal from this disease :)

well....considering

2012-01-19T09:01:00.002-06:00

...considering for the last month I've been traveling. I flew to my hometown to spend 3 weeks there with my girls and husband, and then boarded another plane to go all the way across the country to visit my grandparents. Then finally flew home. Home-Sweet-Home!

Now, I had 2 weeks of treatment - smack dab on Christmas week and New Year's week. With traveling and all we were sort of holding our breaths waiting to see how my body would handle it this year as opposed to the bad last year.

I did so much better! I definitely had some down days but they were few. The thing that excited us the most was how my body reacted to travelling. I didn't need any recovery time! The next days following being on a plane were normal and I didn't suffer from lagged energy. We are so thankful to see this progress!

I even got to have pictures taken of me by my brother-in-law (and sister with a second camera) who is an awesome photographer. And as I look at them, I see that my body is looking healthier. We are thankful and continuing to pray for complete healing.

My brother-in-law is talented:

Now I am trying to focus a lot on detoxing. I think that's where most of my problem lies lately. I feel like the stuff I do isn't enough. Based on some other Lymies reviews, I am going to try mud baths. And then of course discuss things with my doctor in a few weeks.

Praying for my fellow Lymies!

wiped out

2012-01-06T14:40:00.000-06:00

So some of you know that just two days ago I was admitted to the hospital. I hate going to the hospital, probably like many of you. Lymies hate going because a lot of the time we know better what our bodies are doing than the doctors do.

I usually wait and wait until I think it's a serious enough problem to be seen. Well, this time I didn't want to mess around.

I had very intense chest pain that spread into my left arm.....um....hospital time for sure. Lyme disease can cause heart problems and I wasn't about to just ignore it (okay, I tried to ignore it overnight and then succumbed and went the following morning).

I was out of town, though. So my mom took me to the nearest ER and thankfully it was empty. They brought me in and thought for sure the problem would be solved and for sure I couldn't be having a heart attack. That made me feel better.

Then they did an EKG. Doctor looked at it and walked away. They gave me some Torredol for the pain (which didn't do anything) and then the doctor came in and said they'd be admitting me and doing a number of other tests.

They moved me to another room and did another EKG. Then they gave me Morphine for the pain....it was pretty bad. Morphine took the pain down to a five.....honestly I wasn't there for pain meds, just there to make sure I wasn't having a heart attack.

While waiting to be taken for an echocardiogram (ultrasound of the heart), I had a "seizure". One of my half body twitches where I'm sort of coherent. It got pretty bad and the nurses and doctors were buzzing and then it was decided (as if it weren't before) that I would be spending the night. Thankfully they got all the tests done before the doctors left for the day.

What they didn't know yet was that I had to get on a plane in two days. So spending the night and possibly spending a whole day at the hospital the next day was bad because I wasn't NEAR ready to go (packing and such). One doctor even said I was be there for a FEW days! Gosh, this whole ordeal was turning into a nightmare when I was pretty sure I was fine since they seemed to indicate my heart looked good.

But still -- echocardiogram. It was FUN to see my heart from all different angles! Not something most people get to see in their lifetime. The tech said "unofficially" that I probably had nothing to worry about. You know how they aren't allowed to say anything to the patient about whether the ultrasound is bad or something....she was nice, though and tried to get me a dvd of my ultrasound so I could watch it whenever I please :)

Next up was the EEG. This is wear they measure your brain waves to see if there is seizure activity. They put a weird cap on and put tons of gel (that is hard to get out afterward) and then for like 20 minutes you lay still and close your eyes. Well it just so happened for me that my arm
started doing it's violent twitching during this. I KNEW it wasn't a seizure per say, but I'm happy I was actually twitching when they had my brain hooked up.

And then the MRI with AND without contrast. That wasn't so bad. I've done it before....twice before.

Then all the docs went home. No reading of tests, nothing. Just me left to stay overnight.

The next day we had to scramble to beg them to please let me go; to please get the doctors to come read the tests because I needed to leave the next day to fly out of state. The nurses were wonderful and I thought we were getting somewhere and then the questions came.

New doctors came in. Each one asked, "WHERE were you bit by a tick?" And I told them Northern California. "WHEN did you get diagnosed?" "WHAT meds are you on? NOT doxycycline? THREE antibiotics at the same time and none are Doxy?"

Oh dear, it was too much for them to handle. One said I might need to stay longer. But couldn't tell me why. Yikes. I had thought I breezed through without the judgmental stares and questions but here they were. Then, as soon as they came, they left and finally, the cardiologist and neurologist came to give me the go ahead to leave.

Apparently my heart had some issues but they were NORMAL issues and I needn't be concerned. My MRIs were normal and my EEG was normal! So she said that twitching must be stress related seizing. I could have told her that but I was glad she was concerned to do the EEG.

My whole issues (chest pain and seizing) they decided to attribute to stress. I KNOW it was stress, I just had never felt that intensity of pain over my heart. There was a particularly stressful moment while on holiday that I am fairly certain just pushed my body over the edge.

But here I am, on the second phase of vacation visiting grandparents and I have bounced back considerably. I've had the chest pain on and off when things here get a bit stressful with the children but for the most part I have 60% of my energy. I don't feel awful and I'm not on a treatment week.

So there was my adventure. And sorry I couldn't think of anything else to write about.

thoughtful

2011-12-29T18:35:00.000-06:00

This holiday season has gone a lot better than last year's (seizures and basically incapacitated the whole holiday vacation). I've been on treatment these two holiday weeks, but we've been visiting family so it sort of sticks it to me even more the stuff I'm not ABLE to do while fighting this disease. We are so thankful for the improvements we've seen over the years but I've found myself getting discouraged only to remind myself "Someday, you'll be able to......"

So here are my "somedays":

Someday, I will be able to,

-sit IN the room where the whole extended family is as they laugh and cajole instead of sit in the room nearby because all the "noise" is making me feel yucky.

-sit at the dinner table with the whole extended family instead of in my room as we all eat dinner because the noise of all the kids is making me feel overwhelmed.

-get through the fun that is Christmas morning without getting overwhelmed by the sound, movement, and squeals of delight.

-go to the museum with nieces and my own children instead of canceling because that outing would take away too many "spoons".

-not take time out of precious extended family time to go get a lymphatic massage to help my body be able to withstand and detoxify from little Lyme "bugs".

-eat all the holiday sugary treats without feeling awful (lethargic and joint pain) the next day.

-do my routine for the annual "Talent Show" without having to spend the entire next day locked away in a quiet bedroom unable to move much.

-not be phased by clutter (this seemed to only come on since I've been diagnosed with Lyme; heavens knows I didn't care about clutter before!).

-not limit my time with my visit to my hometown to JUST family because I can anticipate how my body will react if I start doing a bunch of outings with friends.

-sleep in a guest bed without all the pillows and padding around my body.

There are more....

oh-so-close to the Pacific ocean!

But like I said, I've seen so much improvement since last year. And we do truly feel that traveling has sort of taxed my body more than just doing these types of things at home would have. We still have real "plans" for next year and THAT is something we have not been able to really say we have since my sickness began.

So conversely, here were the things I was able to do:

-go get a gluten free cupcake at Sprinkles Beverly Hills :)

-go to Malibu and sit with my husband across from the ocean while he ate a special seafood lunch.

-go out on a few much needed dates with my husband while grandparents watched the littles.

-ENJOY time with extended family

-enjoy watching my girls enjoy their relatives.

-spend relaxing nights watching movies with the family.

And more :)

I hope you've all had a wonderful holiday season so far! Happy New Year!!!

BAM!!!

2011-12-21T18:07:00.002-06:00

V E R T I G O

...again. I think it's a herx. Because last time it happened I was on this same week of meds.

Ughitty-ugh.

not labeled

2011-12-17T09:25:00.000-06:00

Lyme Disease does not define me.

This is a post I've been trying to put together for a long time; a post I've been trying to "work out" in my own life for at least a year.

It's hard to not feel defined when such an all-consuming disease like this one doesn't leave any facet of your life untouched. But just because it consumes just about everything in your life, doesn't mean it sucks all the other things that defined you away. I like to think of them as on hold.

The things that are on hold for me, that used to be a part of me when people would ask, "So, Heather, what do you like to do?" are:

-hiking
-getting my Masters degree

I thought the list would be longer honestly. I would sort of have pity-parties every once in a while, lamenting what Lyme has taken away from me. Sure, it's taken some of the joy, energy, and "zip" from my physical life, but here are the things I still get to do that were part of who I was before Lyme took over (albeit differently than I did them before):

-Pursue godliness
-Photography
-Cultivate friendships
-Play with and nurture my children
-Spend time and go on dates with my husband (and best friend) *wink*
-Enjoy good movies
-Love animals (zoo, wildlife, wish for a dog, and love and make fun of our own cat)
-Encourage others

I'm sure there's more. These things are done differently now because of my energy reserves, but I am still able to do them. I think I used to lament how much Lyme had devastated my "plans". But really, they weren't my plans to begin with - GOD had planned it long before I could have seen what was coming. And so why fight it and feel sorry for myself when this is what God placed in my life for NOW. He wants me to be cheerful and learn patience, and when I stop crying over what I've think I've lost, I see clearly that I'm still able to do so much of what I used to....just a little differently than I used to.

I often would lead a conversation with a new person with, "I have Lyme disease, so I really can't do much other than lay around." But that was a lie because if I had thought about it, I could have told those new acquaintances that not all my days were filled with JUST laying.

And who I was before Lyme is still who I am with Lyme, although I'd say I'm a little more worn, wiser, and stronger for it. I'll tell you what, once you start looking past your life being defined by your disease, a whole other world opens up for you. There are so many opportunities you can sieze even if you are on the couch; so many other lives you can touch and encourage, friends you can hang out with without bemoaning your existence trapped in your house and a body that doesn't always cooperate.

It's hard at first but when you decide that you don't want people to think of you as "that girl who always talks about how hard her Lyme disease is", you'll find that you can make friendships stronger and richer and in my experience, they still know you have Lyme and they respect you more for it. It's a very mysterious disease; all of my friends know how debilitating it can be at times. So I usually get the genuine, "How are you doing TODAY." And instead of going off on how my wrists hurt so much last night I couldn't sleep, and my energy was spent taking a shower this morning, I usually say, "I've had better days but at least it isn' as bad as my worst days!" And then I turn the conversation on them and we start having non-disease discussion.

Non-Lyme conversation is SO nice. Now it doesn't mean I don't "Lyme-it-up" with my Lyme friends. Sometimes you do need to vent and it helps to see how others are dealing with their disease and even encouraging to find out your very VERY weird new symptom is pretty common with other Lyme patients :)

So I guess all I'm trying to say is that I am more than my disease. I'm a child of God, a wife, a mother, and a woman who has many passions and hobbies (that for a time might be altered to fit my lifestyle now). I'd rather be known (outside this blog) as those things than, "that girl with Lyme disease."

P.S - safely made the travel across the country and my body is doing so much better than it did last year. We are so encouraged at the progress I've made. Onward and upward with treatment!

fantastic!

2011-12-12T11:31:00.000-06:00

I am on my second "off week", but I have been feeling fantastic! Energy levels through the roof and a very joyful heart. I've been enjoying it so much as we near my next two treatment weeks (which just so happen to be the week of Christmas and New Year's) and I hope I can be just as grateful if I feel terrible during the holidays.

We are so encouraged as I have been dealing with my "bad" days a lot better than I had been. I generally have about one or two days on a "bad week" where at some point in the day I feel like I need help. But I haven't had any and I've made it through at no more harm to my body than if I had had help! We are so thankful that this treatment plan is working to clear my body of Lyme&Friends.

It makes us feel more like we can start thinking about future plans. We have some travel time in the beginning of the year and while they are on "off" weeks, we do feel like it most likely won't stress my body out as it has in the past.

In a word, we are HOPEFUL. We know the disease can be so up and down so we haven't really let out a sigh of relief yet, but we are so encouraged at what we're seeing.

I'm taking advantage of all this feeling good to love on my husband more and love on my children more. And seeing as we're nearing the holidays where things tend to stress us Lymies out, I'm just hoping I can take it easy and make sure to listen to my body so I don't overdo it. Seeing family always tempts me to do more than I should.

Praying for all you other Lymies as we get closer to the holidays!!

not worried

2011-12-05T11:37:00.003-06:00

I realized I've come to a point in my sickness (and in life) where I now try not to worry about how my house looks when friends come over for a casual hang out. And I don't worry as much about how I look.

When you don't have the energy, what can you really do, except stay holed up in the house, not leaving any room for friends who would LOVE to come visit. My husband usually takes care of food and such so that I can rest. But what was happening before was that I was not having people over because I didn't have time to pick up the house. Or I didn't have the energy to put on makeup and what not.

Since moving to our new place (been here a year), we've realized just how important getting together with our friends is to my health and to my husband's sanity. On my worst worst days, I obviously can't entertain or keep up conversations so we do say no at those times. But when it's just a matter of not having energy to clean or to put on makeup, we try to say yes. Our friends make us laugh; our friends encourage us; our friends understand. We always come away from time spent with friends feeling refreshed, even if it doesn't physically "heal" me.

We also started using our "good" dinnerware every day. Someone once said (and I don't remember who) that you should use your good dinnerware with your own family and friends instead of saving it for a special occasion. Now, we don't own fancy fancy china, but we do have two sets of dinnerware. One I use during the day with the kids and for myself, and the other I used to just keep away until guests would come. But then we decided to just use it because it is cheerier and by golly, it's OUR dinnerware. We also started eating at the table each night. On very bad days, I eat on the couch still, but I love that my husband still eats at the table with the girls.

Now, back to makeup. I used to wear makeup and do my hair every day. Not overly dramatic or anything, but every day I put on makeup. When I got sick, that went out the window. I mean, who has energy for makeup and hair when you can barely take a shower without having to sit out the whole day. I would say that now, 80% of the time, I do not wear any makeup.

I'm one of those people who goes out without makeup and strangers ask, "Are you sick?" And that was BEFORE I was sick too! I guess I don't have a good complexion and my eyes need a bit of help to pop instead of looking sickly.

These days I save makeup for when I'm going out with my husband. That means church, dates, and shopping with him. And I put the extra touch on when it's a date. We had the privilege to go on a date recently and as I was getting ready, looking a little "fancier" than I usually do, I realized that most of the pictures of me are "sick on the couch". I decided from now on, when I wear makeup and dress in anything other than sweats, I'm going to take more pictures of myself. I want my girls to be able to see pictures of their mom NOT looking like a frump all the time.

My oldest daughter LOVES when I put on makeup and dress up. She sits in the bathroom just watching and asking questions about the various things I'm doing to my face and ooohing- and-ahhhing about how "pretty" my lipstick is or how "lovely" my shirt is. I love it. I also want to teach her to look nice....especially for her husband. Whenever she says, "You look so pretty today!" I say, "I'm being pretty for Daddy!"

5 years ago

I was lamenting to my sweet husband about how I saw pictures from 5 years ago right before I got really ill and how just a bit more facial "fat" made me look so much more healthy and now I'm just "gaunt". But he assured me that he thinks I look just fine now and that some day I'll gain some healthy fat again. I know my husband loves me and still calls me beautiful even with my chicken legs and sallow face -- even without makeup or dressed up clothes, but I still hope for the day when I'm well and can spend some energy to wear some makeup and wear something other than sweats for him and my family EVERY day :)

This is your Mama, girls. When she makes an EFFORT to look nice :)

cloudy with a chance of sunshine

2011-11-30T15:32:00.000-06:00

Let's see, for at least a month, maybe even longer, I have basically had cloudy skies over my head. I'd been doing "better" and enjoying it and then started the new meds. Bring in the clouds. I should have KNOWN -- I mean, it happens EVERY time. Every new protocol seems to target something else or take a different approach to trick those little Lyme "bugs" into surrendering. It's a GOOD thing for my body, just demoralizing for my soul. Especially after feeling like I made a huge improvement before.

It's been hard to be creative enough to blog; hard to be creative enough to make my daughters stay happy and entertained during the day......basically I've been dragging my feet with my head full of sludge. I think most of it is the meds and herxing. Some of it was anxiety about my daughter's Lyme test (which turned out to be Indeterminate....herm) and what to do after that news (we're praying about it and think we know which direction we're going to go with this). And possibly the holiday "stress". Our Thanksgiving wasn't stressful at all but there is some subconscious "stress" that goes on when hosting.

Here I am in the middle of my second week of meds before a two week break and today was the FIRST day in a month+ where I had the blessing of feeling some sunshine. My head is clearer, my kids are happier, and I just feel grateful for even the shortest of reprieves from how I've been feeling. Even if it leaves tomorrow, I'm hoping I will still be grateful that I had this one day after many long, bad ones.

I'm enjoying the holiday season. We decorated for Christmas in our house and as December rolls in tomorrow, we will count the days off until we get to see our extended family. It will be the first trip we've made as a family since last Christmas. We usually take a Summer vacation but I was too ill this year. We've felt a bit cooped up because of that. So I know that all of us will feel wonderful and each get a rejuvenation not having to be in our house faced with my disease all the day long.

I know I'll still be ill and feel ill during our holiday, but sometimes the extra laughs you get being around your funny brothers, and the extra hugs from moms and dads will help. And girl time with sister will make me feel a little more "normal" too. And the list goes on.

So anyway - the sunshine today is welcome warmth for my soul and I know God gives me those encouragements just when I need them.

not as planned

2011-11-22T11:37:00.001-06:00

I've been struggling to write anything lately on this blog because I've been feeling pretty rotten. My life on this day is not as I had planned. I had hoped to be doing really well with this new round of meds so that Thanksgiving would be easy-peasy to prepare for. But it has not been; my body is not cooperating. And on top of that, dealing with very needy children and also one of them being sick (ultimately pneumonia!). Sometimes children are more wanting than usual. More wanting of attention, discipline, boundaries....those are all things that are so hard to do for your kids when you're so sick you can hardly move or when talking is too fatiguing.

need, need, need!

But sometimes when you are THIS sick, you have to set your priorities. You might have to choose ONE task out of MANY that are calling you to do them because your body literally cannot handle more than one. I've tried to make my kids the one thing I do lately. There are some seasons where they do not need as much of me and there are others (like lately) where they really, really need their Mama to love and to guide them.

The problem with THIS priority is that it drains me more than any other. Children are such an investment. But such a rich one. I never have regretted having them, even when I'm my sickest. They are a blessing and it's such an honor and blessing to me to have been entrusted with them to care for and raise (along with my husband by my side). I know not all moms get to stay home with their kids so I don't take it lightly that my affliction has made it so that I MUST stay home. I am thankful.

Friends keep asking me, "Can't you just skip this week's treatment or move it to another week?". Maybe. But in the grand scheme of fighting this disease, it means more to me to keep fighting, even if it means feeling bad on holidays; because the feeling bad is usually a good indicator that we're on to something. I want to keep the momentum going and kill as many little "bugs" as possible so that I can be well sooner.

I'll tell you what has gone according to my "plan" so far -- my appetite is still here! No nausea in sight. I'm praying this will last through Thursday so that I can feast upon all the delicious food we're having!

Have a happy Thanksgiving!

like it shouldn't be week two

2011-11-14T18:25:00.000-06:00

.....of my off weeks. For the last month or two, as soon as I hit the Monday after my two weeks of meds, I feel pretty good. The lymphatic drainage massage has helped and I seem to have usually detoxed pretty well so that by the second Monday of my two weeks off of meds, I am feeling great. I start to plateau on the Sunday before I start meds up again.

But this round? I have felt more run-down than usual. Super sleepy which is not normal for me (I have energy problems but not sleepy problems), minor pain in my joints, slow brain, and low low energy.

It's been a huge disappointment. It always is when things have been going great for a while. This is the first "off weeks" of a new protocol. So I guess I can blame that. There was also a dosage mix-up two weeks ago where I took double the dose of one med all week (not entirely my fault since a nurse accidentally took my word for it when I called with a question about it instead of checking with the doctor).

But today, the first day of my second off week, in which I "should" be energetic and getting my house ready for Thanksgiving company, I am literally laid up on the couch with a knee and ankle that feel as though they are about to burst at any moment. Have you ever had that throbbing joint/muscle pain that just feels like it's going to explode? I've got two Lidoderm patches on my body and I may give in and just take some of the strong pain meds my doctor has prescribed for times like these.

Wow, it is so hard to find the joy in this. My friend from out of state is here and I had hoped so much that instead of her just coming to help me (which she has), that since it was my "off weeks", we'd be playing it up. We have had chances to do fun things but not in the way that I had hoped my body would feel while doing them. We've gone shopping together, we went to Sea World with the rest of the family (me in the wheelchair), and we've gotten to enjoy a lot of Netflix together.

I think of all my major complaints that plague me - low energy, pain, and brain fog - it's hardest to find thankfulness in pain. And I don't mean headaches and little joint pains here and there. It's the blaring, loud, takes-you-off-your-feet pain that seems to keep me at a loss for God-ful thoughts. I try to recall verses of encouragement and I just come up blank.

But I can remind myself of truths - that God hasn't abandoned me. That He allows these trials for reasons we may never know, but that He'll never give us more than we can handle in them. That He is sovereign. And that He is the true Comforter.

So while it's confusing to me in the scheme of my course of Lyme treatment to have a "set back", I have to just keep remembering that for Lyme, this is "normal", and that God is with me in every valley and every peak.

And for a laugh - this is what I look like when I think I'm taking a picture of sea lions but really
my camera phone is on reverse so it's taking a picture of me. :)

organized

2011-11-08T05:56:00.014-06:00

I've been thinking lately about my detoxing habits and how the ones I do really do help. But in the beginning I had no idea when or how to do these things so I thought it would be helpful to just give a bit of info on how I've been told to detox.

1. DE-CAFFEINATED Green Tea. I do NOT care for green tea at ALL. But my doctor keeps telling me that it's a great detoxifier, so I do it. I drink about 2 mugs a day. I heat it up, let it steep, then let it sit until it's room temp and then I just guzzle it. That's the only way I can handle it. It contains lots of antioxidants that boost the production of detoxing agents in the body.

2. Epsom Salt Baths. This was one that I just really did NOT understand in the beginning. I didn't know how much salt to put in, and I was told to add baking soda and hydrogen peroxide to the water. I tried all different combinations and now I think I've got it down.
-Run water as warm as you can stand (but if you can't, then lukewarm is fine).
-Add about 1 1/2 cups of Epsom salt, 1/2 cup of baking soda, and 1/4 cup of hydrogen peroxide to the running water. I usually just eye-ball it.
-Once bath is filled, sit in it with as much of your body covered by the water.
-Stay in as long as you can stand it, but NO LONGER THAN 20 MINUTES.
-If you are dizzy or really weak, make sure you have someone there to help you out of the tub. In the early days my husband always had to help me because I literally would faint if I stood up.

So my recommendation is to do this only every OTHER day, never two consecutive nights in a row. Also, it truly zaps me and makes me feel pretty awful right afterward, so I save this for right before bed. That way I can rest and sleep it off. The warm bath also makes you kind of sleepy so it helps to do right before bed in that regard. I wake up and feel better after these baths.

3. Lymphatic Drainage Massage. I've gone through a few different masseuses who do this type of massage. You really have to find one you're comfortable with and seeing as some do different types (the type they were trained in), you might find that some work better for your body than others. I only every get this done at the END of a treatment week. It really gets your lymph system flowing, helping to detox all those nasty toxins that are released when the little buggers are being killed.
So for example, I do meds M-F. So I get the massage done on Saturday morning. I can't tell you how much this helps me. Of all the detoxing things I do, this helps me the most. I notice a difference right away - more energy and less pain. Make sure to drink lots of water before and all day after. I also take it real easy the day of the massage just so I don't overdo it. I can seem to feel so good that I want to do tons of stuff but I find that if I do, then I crash. If I ease into being active after these massages, I feel a lot better.

4. Broccoli and Chicken. Broccoli is a WONDERFUL detoxing food. We eat a lot of it here and thankfully my kids like it too! Also, if you aren't vegetarian and you can avoid red meat, choose chicken. Both of these foods (and some others) contain selenium which produces an enzyme that "guides" the body to detox.

5. Drink LOTS of water. What comes in, must come out and with it comes toxins. If you drink caffeine, make sure you drink a glass of water to match it because it has been said that caffeine can stimulate urination.

6. Exercising. This one is hard for us Lymies. Especially those of us who have zero energy. Just do what you can. Sometimes this means a quick 30 second bounce on my mini-trampoline. We also bought recumbent bike pedals....I sit on the couch (or slouch some days) and just pedal at my own speed as long as I can without wearing myself out. Working out your legs helps strengthen your heart. So it's good all around. When I have even more energy (not as often), I take the kids out for a spin around the block. Pushing one or both of them in the stroller helps raise my heart rate.
Also, sweating is a wonderful way to detox. So exercising can be a path to that.

Now in addition to all of this, I take some supplements that also help - CoQ10, Magnesium Malate, Acetyl-L-Carnatine, and Ultimate Omega.

Being "aggressive" in detoxing can make a huge difference in the kind of week I have when I'm on meds.

What are your favorite detoxing methods?

biding

2011-11-04T09:39:00.000-06:00

The time finally came. I hoped it never would. I think every mother who was infected and bore children worries about it. For a while now we've noticed symptoms in our oldest daughter. Mild, but alarming to our Lyme-savvy minds. Lyme can be transmitted in the womb and I most definitely was infected when I was pregnant with both of my children. I just didn't know it.

My wonderful doctor told us not to worry and to just wait and watch. And to assume symptoms that may arise might be related to other childhood things. He said, "You'll know when you need to check it out."

We most definitely know. It took a while to be able to test her because this great state I live in has driven out almost every Lyme-literate physician. We ran into dead walls with her pediatrician. Through online research and an online friend referring me to someone an hour and a half away from us who TESTS but does not TREAT, we were able to finally get our little one tested.

And now we bide our time. It will take 2-4 weeks to get the results. I am unnaturally at peace and I know why. We specifically asked a friend on Sunday to pray for us that we would be calm and not anxious.

My husband is a great reminder to me to just take each day at a time. When I let my mind wander too far into the future and into the "what-ifs", I can get easily overwhelmed. He's right. It doesn't do any good to wonder because it harms my body's trying to kill the yucks inside of me right now. One day at a time.

So when you think of it, please pray for our daughter. Pray that she does NOT have Lyme. I know that is possible!

thankful

2011-11-01T16:48:00.001-06:00

.....as I compare this year to last year.

Last year when we went trick-or-treating, our little family looked like this:

This year? Well, we didn't get a family picture, but I can tell you that I was NOT in a wheelchair. I walked.....the whole time. Doesn't mean there weren't issues (too gory to discuss), but I DID walk. I was so thankful! I love looking back a year ago and comparing it to this time this year. It's encouraging, even with small setbacks to see that my body is becoming healthy again.

Last year my girls were a dragon, and a giraffe. This year they were a puppy and a princess and we could ALL walk :)

not dizzy anymore

2011-10-31T09:26:00.000-06:00

(click on pic to view source)

Have you ever had vertigo? After a rough week last week on meds, I spent Saturday unable to stand up because of so much dizziness. By the end of the day I was violently throwing up that we cancelled our plans to go to a costume party. I was sad but it definitely was MY call because I knew I couldn't even lift my head without feeling like I was going to pass out.

This is my first taste of vertigo and I wonder if it is a common Lyme thing? I'm just thankful it doesn't happen all the time!

Now I'm starting my second week of meds which involve two completely new ones that I've never had. I wonder what my body will do. Sunday I was feeling better after the vertigo on Saturday and this morning I woke up feeling a LOT better. Just in time to pop some more pills. Oh dear. My mom is in town and she's been caring for my girls and the house so I really can just rest and let my body do it's thing to kill these "bad guys".

What do YOU do when you have a whole day of dizziness?

grouchy

2011-10-26T06:11:00.001-05:00

OH my. When I start feeling really ill I get grouchy. And this week I am GROUCHY. I feel bad for the family. But they can tell with my snippy reactions.

So let's not talk about that :)

So the last two weeks that I was off of meds, I felt a lot of my creativity come back. I've been browsing Pinterest and have gotten some inspiration there. Here's what I've gotten done over the last two weeks!
I furiously set about to paint my daughter's crib the NIGHT BEFORE I started this week's meds. My husband came in to help me for a bit and was asking me about my sudden surge of "projects". I told him that since I feel better on "off" weeks, I get more creative and as the two weeks come to an end I feel like I have all these things to try and to finish before the dreaded day that the meds/bugs dying start slowing me down to where I'm trudging through sludge. I told him I feel pretty useless those two weeks so I feel like I have to put all I have into these things I try to get done before my "on weeks" start. He seemed to understand and stayed a few extra minutes to help me get the first coat of paint on the whole crib so that I could finish it up the next day.

Before:

After:

I also set about to decorate the house for fall. I made a front door wreath:

A "thankful board":

My daughter's first grateful leaf: "God loving us" :)

Pumpkins :)

I decoupaged this foam pumpkin:

I took a cute mirror and turned it into a chalk board:

Anyway, I will now resume my place resting and feeling grouchy.

pleased

2011-10-24T06:32:00.036-05:00

Last week I managed to have enough energy to interact with my children more, parent them the way I always wish I had the energy for, and went on a walk with the kiddos. It wasn't very far -- I'd say half a mile at most. But I was pushing BOTH kids in the double stroller. We walked to a nearby grassy area. The kids LOVED getting outside since we've been cooped up too long. They ran and ran like children should.

But I soon realized that pushing a 32 lbs and a 22 lbs girl in an already heavy double stroller was not a smart idea. I may have overdone it that day. I spent the rest of the day just waiting on the edge of my seat expecting a huge "fall". Thankfully there wasn't anything major, but I did end up being quite a bit off my feet for the rest of the day.

Well, it was just so unfortunate that walks weren't going to work because we happened to get a snap of cooler weather, making being outside so much more bearable.

So I made a sweep of the backyard to make sure we didn't have any unscrupulous bugs that might hurt the kids (no we don't have ticks in the backyard, thankfully!) and then asked them if they wanted to play out there. Sadly, I can't just send them out there alone. My youngest would most likely get into too much trouble. She needs supervision. So I grabbed one of our reclining beach chairs and set it out there, resting the whole time, watching my kids play. It was such a joy!

Sometimes I find that when I'm cooped up on the couch feeling awful, all I see are my children disobeying, being naughty, being unkind to each other, and not speaking to their mother as they should. I can tend to focus on the bad they are doing instead of seeing their creativity and kid-life and the times they DO obey, treat each other sweetly, and speak nicely to me.

It was nice to remove myself from the couch (even if I did recline outside!) and get the reminder to really watch my children inside the house and out :)

*disclaimer* - just because I felt the need to rest this week, doesn't mean I was having a bad week; on the contrary, I was doing really well and doing extra stuff, and therefore needed to rest more :)

surprised

2011-10-19T09:53:00.000-05:00

First off, I need to say that the previous post was not fair of me to post in the brief way to wrote it. I didn't have energy to explain things properly and it could definitely look like I was a huge "conspiracy-theory" type person. I'm not that person. And I was trusting that most who read it understood the controversy that goes on between LLMD's and researchers and the CDC. But those who don't know would probably just write-off what I wrote.

Also, the maps I used were probably not the best ones because the Vet's map included a few ticks that we don't know transmit Lyme to humans. MOST of those ticks do and if you even just looked at the "Deer Tick" areas you'd see how different it is from the CDC's map. Also, there's a better map here of what the CDC thinks about Lyme exposure. STILL, very under-reported and not accurate. The CDC says that Lyme may be underreported by about 6-12 times what is reported each year!

ANYWAY -- more importantly for me to clear up, it was brought to my attention that the CDC does finally say that you can contract Lyme disease in NORTHERN CALIFORNIA! yay. But it's hard to be excited for too long when you see that they don't believe it can be contracted in so many other places and not in as great a quantity as those inflicted with Lyme are proving!

I just wanted to be fair. I don't want to alienate people from the reality of the disease just because I wrote something without explaining it when most people who don't know much about Lyme would probably trust the CDC in most cases.

Like I wrote to someone recently -- I don't believe the CDC as a whole or even the majority of doctors are a part of some "conspiracy". I just believe they are misinformed.

I believe the high up docs who set the guidelines for treatment and diagnosis of Lyme for the CDC are the ones to blame and that would be an entire essay to explain so what I'd tell you if you're curious enough -- read Cure Uknown: Inside the Lyme Epidemic. This book explains very well and sites sources and stuff.

And I pray that SOON, the truth will become prevalent so that we can get better treatment and get insurance to cover our healing. And I hope that when I am well I can help to spread the truth about the disease more than I can now.

like a dog is more important than me

2011-10-17T12:35:00.000-05:00

Here's the CDC's map of where the Deer Tick can be found. They basically say that if you're not from around those areas, there's NO way you could have Lyme disease. Even this map is quite generous in my experience with doctors. (BTW, I was bit in Northern California and so were other dear ones I know who are very ill)

But look at this map. This map is what Veterinarians' show as areas your dog can be bitten by a Deer tick and get Lyme and Lyme-related diseases. They can use medicine on their pets to prevent Lyme.

*sigh* Come on!

I've been feeling great since being on my first "off" week of meds. I think I actually did too much so today I'm laying low. I may go out tonight with my MOPS group to do some crafty stuff (which I love), but it will really be a last minute call.

So you know, I've been praying for you fellow Lymies a lot! Especially if we've ever had email or blog contact. You are on my mind!

well enough

2011-10-12T06:50:00.000-05:00

....to do so many things. My first outing in such a long time where I take both girls to the pediatrician by myself!

I can't believe how much better I've gotten since my lymphatic massage on Saturday. By Monday my energy was up to a 60% out of 100%. That is pretty darn good for me. And today I'm up to a 70%. Though this big (to me) outing may zap me more than I wish.

I am just thankful that God has allowed me to improve. THIS is how they expect you to feel on "off" weeks of meds. This is a good sign for my body.

The last few days, we went to church, went outlet shopping as a family, turned a mirror into a chalkboard, did mounds of laundry, and took care of two littles. Quite a lot! And I'm still standing. Yay!

relieved

2011-10-08T09:46:00.000-05:00

I got a call at about 5pm on the dot last night and the nurse from the surgeon's office told me that the lump they removed was benign! I asked her if there was anything about it that was bacterial or Lyme related and she sounded a bit unsure but said there was nothing abnormal about the lump. So I suppose I'll get the full story at my appointment next week with the surgeon. But I'm bracing myself to hear that, yep, this lump was not unusual in any way. Which is fantastic! (just a part of me wanted them to find a Lyme related bacteria in it)

We are so thankful for all the prayers. We let friends and family know right away last night and there was a collective sigh felt with each response that trickled in over the course of the evening. It felt nice to know so many people were praying for us and were genuinely concerned. We sighed too.

But I'll tell you what - as soon as I got off the phone, I sat for a second in silence and the first words I uttered were, "Thank you, Lord." I didn't exclaim it. I pondered it. I know He was in control and that in either situation, whether it had been something ugly or whether it was benign, that God ordained it. He takes care of us.

"Are not five sparrow sold for two pennies? And not one of them is forgotten before God. Why, even the hairs of your head are all numbered. Fear not, you are of more value than many sparrows. And I tell you, everyone who acknowledges me before men, the Son of Man will also acknowledge before the angels of God," - Luke 12:6-8

Then I said it again and again as I drove home to tell my husband. I wasn't emotional or crying or anything. In all honesty, the weight of trying to get my physical self back up to my "normal" took my mind off of being really apprehensive about my results. And I'm not quite at my "normal" yet but I think I'm close. I have hopes that on my next two weeks "off" of meds I'll have more energy.

Thanks for praying for us!

like I'm climbing the hill again

2011-10-06T09:42:00.001-05:00

God has answered our prayers and I am no longer "miserable". I still have energy issues but the lowest low that I was at has gotten so much better over the last few days. Instead of 0% I think I'm about 40%. That's a huge difference in such a few days! It gives me encouragement that after a year of treatment, my body MUST be rid of lots of those pesky bugs that ruined my immune system. It took me a year to go from 0% to 60% so to jump so drastically in a few days keeps me cheerful. Today and tomorrow are "Flagyl" days and this drug does a number on me. I know it's all good, but I am expecting to "fall" a little bit more in the next two days and on Saturday I'll finally get to go get that lymphatic massage that helps me so much with detoxing.

I was looking at pill boxes online yesterday. I LOVE mine. It's an AM/PM weekly box that's not huge but has ample room for all the pills I take every morning and evening. It also detaches each day or a few days at a time if I'm going away for just a day or two. I like that about it. Anyways, it's getting old and worn and I thought I'd look for what's out there. I came across this picture and it made me laugh. It makes me thankful that I don't take THAT many pills in one morning. I know some people might and in a lot of ways it DOES remind me of the large volume of meds I have to take in a day....but, gosh! That is a lot of pills!

fallen

2011-10-04T09:31:00.001-05:00

It's hard to fall when you've been so high for a while. I had been feeling so much better as you have seen through my blog posts. I had told my Lyme doctor that I was feeling back up to about 80% And I was thankful for those days and trying not to take them for granted. But after the surgery - WHAM! I have felt worse than I ever have. I compare it to a time when my liver was all whacked up and I was jaundiced. I literally felt like death was near and just so miserable. I went from 80% to 1% -- no exaggeration there.

I think recovering from anesthesia AND my body trying to heal an incision cut into my body AND trying to heal from all the dead Lyme&Co bugs just threw my body into a tizzy. I'm still in the midst of the tizzy. But I'm better than yesterday. I couldn't say that until today. Today (or this morning I should say), I don't feel that bloated feeling near my liver/spleen that just makes you feel as though you wish you were in a coma so you could skip this physically awful part of your life.

So many things with my body started reacting after the surgery. I can't pinpoint one thing that did it. It will probably be a mystery since there were so many culprits. But I think now that things are somewhat tamed down, I know that detoxing was the hardest part. My body was just overloaded with work to do and my body wasn't a "normal healthy" body to begin with. All my previous detox tricks just weren't enough. It was like I was so overloaded that detoxing only sloughed off the tip of what needed to be taken away. My lymph nodes are full of lumps once again.

I feel set back. But I keep being reminded that it still hasn't been a week since my surgery so my body is still recovering from that, and I'm on a treatment week which is already hard on my body! So I suppose the real test will be at the end of this week when I am through with antibiotics and get a break. We'll see how my body rebounds.

It sure doesn't feel great, though, after you've been feeling so so so much better. I keep focusing on how those good days weren't guaranteed for me and that yes, they were good, so just be thankful for them and focus now on each step. I can't even focus on each hour -- that's how bad it is. I can only take each step at a time.

I've been keenly reminded once again at how fallen and broken our bodies are and how in this life they will never be perfect. And again brought back to the fact that I'm thankful for a Savior who says we only have to believe in His name to have eternal, PERFECT, life with Him in heaven. My body won't be sick anymore; I won't cry anymore; and best of all I'll be with my God.

Still no results from the doc on the biopsy. But I surely won't forget to update you on that. Pray that my body will get ahold of itself. I can't take care of my kids and really don't have any "good" parts of the day. Pray that I'll get the help I need during the day until I feel well enough to get through a day by myself! And pray my mind will stay heavenward and that Matt and I will trust in God's sovereignty in this situation in our lives.

(via)

slow-going

2011-09-30T14:47:00.002-05:00

The consensus was that y'all wanted to see the scar. But I saw a few "no's" so here's what I did for you. You can click this link or you can click on the link above that says "If you want to see my scar....". I'll have it up for a few days but then I'll take it down. So now the squeamish don't have to avoid my blog :0) And I'm proud to say, that after 48 hours, I was finally allowed to shower!!! I mean, I have definitely gone 48 hours without showering, but when you have orders NOT to, it makes you really antsy TO take that shower.

I don't know how much I explained about my ordeal in the recovery room. Basically I knew that with any surgery there would be IV antibiotics. So I wondered how my body would react to them. When I was "coming out" of the deep sleep they had put me in, my body started to twitch and then shake and then convulse like I do when I'm having a "partial seizure". I haven't had one for at least three or four months so I'm pretty positive it had to do with the IV antibiotics. Anyway, the nurse was going between me and another patient and she said "Are you cold?" and I couldn't answer. I just kept flailing away. She wrapped me up and put an air hose blowing hot air under all the blankets and then when I kept shaking she pushed Demerol in my IV line. That made me stop convulsing immediately.

I started coughing too. The lady recovering next to me was coughing as well. I heard the nurse say to her, "Cough it out, cough it out......it's because you had a breathing tube." I had a breathing tube too so I assumed it was that for me as well. But my coughing spasms just got worse and worse.

They brought me water and it didn't help. I still wasn't speaking. I think I was still in a daze. Finally they just wheeled me to the second recovery room where Matt could be with me. I was STILL coughing and then once I reached the room, my chest started rattling. Loud! I never felt like I couldn't breath, but it was ridiculous to breath and sound like a rattlesnake. Plus no amount of coughing could get any of the rattly stuff up. Machines started beeping, doctors and nurses came in in a hurry and listened to my chest. They tried to act calm. They asked doctors as they passed by what they thought.

I was given an albuterol treatment and it didn't help. So they gave me something else through the nebulizer and that seemed to help a lot. The rattling subsided but now my lungs felt tight and on fire. They tried to find the anesthesiologist. While we waited my heart rate skyrocketed because of the steroid treatments. Matt said according to the monitor I should have been running a marathon :) The doctors said they didn't even HAVE to listen to my chest when it was rattling because they could just FEEL it when they put a hand on my back.

Finally the anesthesiologist came and asked some questions and listened to my chest and then said that sometimes, rarely, patients can have this kind of reaction to one of the gases they use to put you under. He said he didn't use THAT gas. But he supposed it could happen with another. So basically it was an irritation that triggered an asthma-like attack. I get bronchitis every time I get a cold. Inhaler and everything. They said I may have a touch of asthma if it happens that often and especially with the way I reacted to the gas. But they told me next time I have surgery tell them that I had Postoperative Bronchial Spasms so they can avoid using the stuff that can cause that.

Anyhow - I was finally able to go home and the doctor releasing me said that the rattling would most likely come back and that if I had an inhaler at home, to just use that. So this would be sort of a wait and see kind of thing. I didn't know it would be THIS bad!

I thought I had an inhaler at home but I didn't. I must have thrown it away when we moved last January. My chest and lungs felt tight and just walking or talking showed me I wasn't getting enough oxygen. So I just collapsed on the bed and slept the day off. My sweet husband had taken the whole day off to watch the girls after the surgery.

When I awoke for dinner I felt better but still had the oxygen problem. I realized there was NO way I'd be able to care for my girls the next day.

Then the body of Christ came to the rescue!!!! My sweet Bible study at our church coordinated between themselves to play "tag-team". They were there yesterday all day, even into the night because Matt helps with Awana and I needed help taking Olivia to bed. Then today, another sweet family came to play with the girls until their nap times, getting them fed, and doing extras like cleaning. I got to lay in bed the whole time (sleeping on accident!!!). And Matt will be home when the girls wake up from their nap and be here for the rest of the weekend.

This has helped my healing process so much. We were praying for help for me and God answered yes in all the situations. It was so encouraging to see His hand in it all.

I am on a treatment week for Lyme, so I've got that on top of everything else. But right now, my biggest prayer request is that my lungs get back to normal. I feel them getting slightly better every day but it is so hard to actually not have the wind to do much of anything. I can try and push through it all I want, but it's impossible. I actually feel like I'm going to faint. So I'm stuck until I heal.

OH, and my doctor did prescribe an inhaler, and a sweet friend brought a nebulizer before the doctor could call my prescription in, so the day after the surgery I had some relief with breathing treatments.

There you have it. Still waiting for a call about the biopsy. They said it could be today but more likely next week. I'll let you know! Enjoy your weekend!

in a state well enough to write

2011-09-28T18:52:00.001-05:00

Thank you so much for the prayers you have given on behalf of us.

The surgery went well! The doctor couldn't/wouldn't let us know his preliminary thoughts about what the lump was. He said it was about as big as a man's thumbnail and it didn't go too deep. He said we MIGHT hear the results of the pathology report on Friday but more likely next week.

There was a slight complication with recovery. I had a reaction to one of the gases used to knock me out (so is the theory by the anesthesiologist) which left me coughing so terribly and ending up with a rattling chest. This sure got a lot of staff's attention! The anesthesiologist said it was called Post Operative Bronchio-something? Matt got a little pale watching me, especially when all the machines were beeping around me (he said he hated seeing me suffering so....sweet and caring husband!). I had two breathing treatments because even after the first one, all they had to do was feel my back and they could feel the rattling. The second treamtment helped much more. So they held me a bit longer than originally planned. But once the breathing was under control I was able to go home!

I am pretty miserable because while the rattling stopped, by lungs still hurt SO bad. I start breathing terribly hard when I sit up or talk for a minute or two. That on top of the pain from the incision (which is small!! And I'll take a pic of my shaved hair later) :). So I will stop writing for now but all in all, we are thankful because things could have gone a lot worse.

Thank you for praying and continuing to pray! And thank you, God for being with us and always caring for us every day!

ready for surgery

2011-09-28T03:20:00.000-05:00

Please pray for me! I go under the knife around 8:30am (CST). Pray that the surgeon will have wisdom and be well rested :). Pray I will come out of anesthesia okay and not suffer too much from it's effects.
Thank you!

peeved

2011-09-27T05:59:00.001-05:00

So my surgery is tomorrow morning. Last Friday (a few days ago), I had to do pre-admitting and get blood drawn, etc. in preparation for the surgery which will make things go much more smoothly as we check in tomorrow.

ANYhow, the admitting person took great interest in the fact that I have Lyme disease. But not in a medical-I-don't-believe-you way. She really was interested. She asked about when I was bit and how I was diagnosed, etc.

THEN, as a side comment as she was telling me that the surgeon and the anesthesiologist would be coming to talk to me right before the surgery, she said, "The anesthesiologist will probably be interested in your Lyme disease actually." I said, "Oh." And she continued typing and preparing. Then I decided to ask, "Wait, so WHY will the anesthesiologist be interested in it?" expecting her to say, "Oh well, that anesthesiologist had Lyme too."

But no. She said, "Oh well, he'll be interested because, you know, Lyme is blood-borne......"

"OH!!!" I said. And then I started to stew!

Lyme disease blood sample

They don't believe you when you say you have chronic Lyme. But the minute they are going to be around your blood, they have full confidence that it's not "all in your head". Wow.

I'm sure many of you know this, but did you know that if you have Lyme or have every had Lyme, you cannot ever again donate blood? Another example of the medical community believing you when otherwise they wouldn't.

*sigh* I'm not mad and I won't BE mad at the doctors tomorrow because I like to believe in most cases it's just a lack of information for most of them. But the general idea that they believe you and don't even ask for proof when they are dealing with your blood --- THAT makes me peeved.

GIVEAWAY (Winner announced)

2011-09-26T08:33:00.000-05:00

And the winner (randomly generated at Random.org) is ALYSON!!!
Send me your address and the stationary set will be sent your way immediately.

(If you left a comment but already has "liked" Today......'s FB page in the past you got the 2 entries as stated in the rules. Just wanted you to know you got treated fairly.) :)

More giveaways to come!!!! Thanks for participating!!

GIVEAWAY

2011-09-23T05:23:00.006-05:00

Here's a little light to brighten your otherwise dreary life (if you're ailing from a chronic illness). A giveaway. And you don't have to be ailing to enter this giveaway. If you're a reader of the blog then by all means, please enter for a chance to win.

Here's the deal, you can enter 2 times. Once by leaving a comment. If you don't know what to say in the comment just say, "hi". That will get you one entry. But you'll get TWO entries if you press the "like" button on Today I Feel Exceptionally's Facebook page - CLICK HERE to do so now. So you got that? One entry if you leave a comment. Two entries if you leave a comment AND "like" Today......'s Facebook page.

Here's the prize - Handmade (by me!) notecards. Set of 5 notecards w/envelopes. These are perfect to send a friend a note of encouragement or a thank you card. Use them for whatever reason you can think of!

You have until Sunday night at midnight (EST) to enter. No more than two entries allowed (following the specifics above). The winner will be chosen at random via Random.org's drawing generator. And winner will be announced Monday!!!

The winner will need to provide me their address so I can mail it to them and you can do so privately by emailing me once I have announced you have won.

Happy winning (hopefully)!

If you think that this "Like" button below will let you
"like" Today's..... Facebook page, it's actually a like
button for this POST. So if you want your "like" of
the FB page to show up,
don't click on this one (unless, of course, you want to share this giveaway with your friends)
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less calm :)

2011-09-22T11:41:00.000-05:00

Oh my deary me. While the appointment on Tuesday went well and I really love my surgeon and think he's very wise, it turns out this lump is still in my neck. And instead of it being a quick procedure while being awake (local anesthetic), the surgeon thinks it much better to put me completely under.

So next week (yes! THAT quickly!) I will be hopping on an operating table early in the morning (on a treatment week, no less) and being put to sleep so they can operate on my neck. The reasons are many and I trust his decision to do it this way, but it does make my whole "calmness" sort of come down a notch. Being put under general anesthesia makes me a little more worried and I just hate the feeling after as you recover for the next day or so from all that anesthetic (while watching two Littles).

I've already spoken with my LLMD and it seems that none of my meds will interfere and I can even continue to take the antibiotics for treatment. ~~Yay!~~ Now I get to recover from anesthesia AND fight Lyme bugs next week.

So I will appreciate your prayers next week and leading up to next week! I sure could use a message to my body that it's okay to relax and sleep all night. Even when my head seems calm, my body freaks out when stressful things are about to happen so I have been having very interesting nights of un-sleep.

But I'll tell you what, even with bad sleep and this stress on my body, I am still feeling so much better than I was a year ago. I just keep standing amazed at how far God has used the doctors to bring me.

And you know what else? The surgeon suggested we test the "lump" for (among other things) Lyme&Co. I didn't even bring it up!!! This is nearly a miracle because doctors in my state get in real trouble with they TREAT chronic Lyme and most doctors I've told that I have it or that I want to get my children tested have scoffed at me in a very rude way. So I'm sorta shocked that he would bring it up without me having to ask him to test it.

I'm blessed that I have had some "good" encounters with doctors here.

To lighten things up, check in tomorrow for a giveaway!!!

calm

2011-09-20T10:47:00.001-05:00

Today is the day.....well, not THE day where the "lump" comes out. At least, I don't think so. I believe it is just a CONSULT with the surgeon. But my general doctor seemed to think they might take a look at it and say, "Let's take it out now." So I guess that might be a possibility.

But now that I've had a week to think about it and be a tad anxious about the whole thing, I'm exceptionally calm today for some reason. I know my church family is praying for us and so many others and so that does probably have a lot to do with my calmness.

Anyway -- I'll let you know how the appointment goes. It will probably just consist of, "Yes, I feel that lump. Let's schedule your surgery." :)

P.S - Giveaway coming soon!

lumpy

2011-09-15T12:42:00.000-05:00

This is a PSA :) Well, you know...a bloggy service announcement.

So I've had this small pea sized lump at the base of my skull for about a year. I don't remember exactly when I noticed it but it's been there for a year. And it changes in size. Up and down. Almond to pea, pea to almond. It doesn't hurt. And when I get lymph massages, it doesn't react.

So FINALLY, after thinking about it for months, I did it. I went to a regular old doctor about it. He says to be safe it should be removed. I'm having a lump removed. That sounds scary, right? I don't feel scared. All this year I just attributed it to Lyme.

I think we do that a lot. It's easier to say it's a "Lyme thing" than to go to a regular doctor who might shun our disease but treat something that may not be Lyme related. You know? Just because we have Lyme and Lyme mimics other diseases, doesn't mean that other stuff can't happen to our body.

I won't even tell you the two possibilities that this lump could be based on my symptoms and how the lump feels...but let's just say it was super easy for me to say it was related to Lyme. The symptoms could easily be Lyme related OR they could be something else that is NOT Lyme related.

My LLMD is big on not taking chances. So when I ask about weird stuff, most of the time they tell me and explain WHY it sounds like it's only Lyme&Friends. But sometimes? They say it might be Lyme, but go get it checked out because it definitely might NOT be Lyme.

So that's why I'm saying -- if you've got some weird thing going on and your gut is telling you it may NOT be Lyme related but it's easier for you to pretend it is -- just go get it checked out. This big deal I made in my mind about seeing a regular general practitioner was actually so much easier than I thought it would be. The doctor was great and instead of me going on and on about how I have Lyme, I just let him focus on the lump and he asked questions about whether I had other symptoms that go along with "lumps".

And since the procedure to take out the lump is not general surgery, we both decided it would be for the best that I get it removed so we know for SURE just what it is. I'm praying it's nothing.....and actually I really have no anxiety about it. I more just want to get rid of it and know what it is so I don't have to constantly think about it.

I'll let you know.....

victorious

2011-09-13T11:07:00.000-05:00

Okay, okay, not completely because I know this is just PART of getting better, but it felt very very good to be able to take my dad (who was in town just for the weekend) downtown and be able to walk. WALK. Not be in a wheelchair being pushed around. We have done this "downtown" routine many a time in the last months with visiting relatives and friends and each and every time I was in a wheelchair.

STANDING......and happy and holding my daughter.

Now, I'm not saying I didn't have some consequences after. When we got home my legs hurt really bad and I had to apply the pain patches but that's better than feeling like you can't walk at all or so drained of energy that you can't move. I'm seeing small victories and feeling a lot more hope. I know this is an up and down disease, but I'm really enjoying these ups lately!! Thank you, Lord!!

excited

2011-09-09T04:21:00.001-05:00

That is the face of a Momma who, on a Flagyl day, was able to get up early, get both kids out of bed, dressed, and fed by 8:30am when we walked out the door to drive to my first ever meeting of MOPS.

*sigh* I'm tired, crashing on the couch, and just plain worn out but it was so worth it.

I feel excited. This is the first time in a long time that I've been able to make any trip out of the house with both kids in tow....let alone having to prepare them to leave the house by myself. I'll admit, I did get some stuff ready the night before, but that's just good planning and thinking ahead, right?

It was so fun to get together with other moms with kids and I think MOPS is perfect for the chronically ill because it only meets ONCE a month! If I did this on a FLAGYL day, I think doing it on a normal day will be a lot easier. Looking forward to this year!

Today is my last day of this new round of meds and I get a two week break. Yay!

chopped

2011-09-07T04:29:00.001-05:00

I always want to grow my hair out long. I see pictures of when my hair has been longer (which never seems to be for a very extended period of time) and then I get it in my head that I want it to be that long again. My hair doesn't grow SUPER fast, so this process usually takes about a year or so.

So lately my hair has been what I would consider "long" for me. And this week especially I have realized, as I always do when it is this long, why I always must go chop it off. My husband was making fun of me in the last month as I've talked about wanting to cut my hair. But I figured it out and need to put it out there permanently so I'll remember next time I want to grow it long again.

I have a lot of hair; thick hair - heavy hair. Lyme disease doesn't help the fact that I lose a lot of it too. But at least I have so much that it doesn't look patchy or anything. But the problem with my hair being so heavy, and it being long, is that my scalp hurts! I've had a sensitive scalp since I was a young girl and my mom would comb my hair straight after a bath. I can't say whether it's a Lyme thing, but I haven't met too many others who have a scalp like mine.

Especially when it's long (but this can happen at any length), my scalp hurts if I wear a pony-tail for more than half a day. If I wear it all day, then when I take it out, there is an actual bruised feeling all over my head where the hairs were being pulled. When it gets long, I get more frequent headaches from the weight of it. It's just not a great thing even though I love how it looks.

So I got it cut. And it's SO much lighter now. My headache lifted instantly when the hair was gone. It's great! And yet, I know---in a month or so, I'm going to forget what long hair does to me, and I'm going to declare to my husband that I am "growing my hair out". And he'll roll his eyes as he usually does because he thinks I'm silly for wanting a change so soon :)

I'm curious -- do any of you Lymies have sensitive scalps (as in, hurts when hair is slightly pulled or combed)?

green

2011-09-05T11:00:00.000-05:00

Happy Labor Day (those of you in the U.S)! Sorry I haven't been on much. We've had an extended-family crisis that has caused us to use most of our time to pray and not think of much else. But that issue is settling down a bit (it involved a little newborn family member who needed lots of prayers and she is doing a LOT better now but still needs our prayers).

It ALWAYS surprises me that when dramatic issues arise like that or when holidays come (like today), Lyme doesn't take a break. So I haven't had much relief from pain and ickiness from the meds. And anxiety (from watching dear, loved ones go through tough times over the last week) only made it worse. But I'm thankful for the trial to cause all of us to grow closer to our Lord who has been and will be in control all the time.

So anyway, I will try to blog again a bit more this week.

Love the status of a friend today on Facebook - "It's not easy being green....." Ain't that the truth for us Lymies (and families).

tricky

2011-08-31T04:14:00.042-05:00

I really like knowing what my meds are doing. And with this round, they are being strategic and tricky. In the past, my two "on" weeks were comprised of the same meds, on the same days, with no difference. This time, the first week works to soften or break up the biofilm that protects the bacteria. Biofilm you ask? Definition: "A thin, slimy film of bacteria that adheres to a surface." With the case of Lyme, the bacteria all cling to parts of your insides and are covered by a biofilm eventually that make it hard to eradicate. But through pulsed antibiotics (the treatment I'm on), you can usually break it up a lot. Here's a little explanation I found (click on the first word to go to the source):

"But in the case of low, pulsed dosing, where an antibiotic is administered, withdrawn, then administered again, the first application of antibiotic will eradicate the bulk of biofilm cells, leaving persister cells behind. Withdrawal of the antibiotic allows the persister population to start growing. Since administration of the antibiotic is temporarily stopped, the survival of persisters is not enhanced. This causes the persister cells to lose their phenotype (their shape and biochemical properties), meaning that they are unable to switch back into biofilm mode. A second application of the antibiotic should then completely eliminate the persister cells, which are still in planktonic mode."

So, that is what we're doing in these two weeks. We're breaking down the biofilm this week and next week going in with the "clean-up" crew. I like to call next week the "Master-blaster" :)

This week, though I'm already feeling some herxing. Mostly just run down, but some pain. I was finally prescribed some pain patches that I tried out last night with horrible pain, and it did bring the pain down so that I could sleep.

I am also trying out a new drug. Anyone ever try Rifabutin? It's supposed to turn all your bodily fluids orange. Tears included. I haven't noticed this much yet. But in my drug instructions it tells you not to use contacts because of this "orange mess". So I'm going with the glasses all week because as much as I don't like wearing my glasses, I am quite blind without them.

Alright -- gotta rest now. Sorry if this post made no sense at all. I can't think clearly about the science of Lyme while on treatment weeks. It muddles my brain so.

reflective

2011-08-29T17:38:00.000-05:00

It's been a year since being diagnosed with Lyme disease and starting treatment. I still feel sick. But I'll tell you what - I AM seeing improvements. Even friends at church are seeing the small things that show a person is getting well instead of sicker.

And I know with this disease there are ups and downs but we're seeing a lot more ups than we were for a while there. I came across this brief list scrawled on a paper I wanted to take to my first Lyme appointment. Of course I had all my medical records and tests, etc, but these were the things that I knew bothered me the most -- the things that interfered so much with daily life with 2 kids. Here's what I wrote:

Symptoms:

-extreme FATIGUE

-achy, throbby joints; especially knees and ankles and wrists. Usually on right side more pain until 2 weeks ago now left side more pain; shooting pain in forearm when grabbing things sometimes – almost have to drop it because of the pain – causes me to wince. Hugs are painful, body hurts to touch.

-achy back and neck; lower back

-trouble falling asleep; waking briefly at night because of achy body;

-waking up in the morning feeling like I’ve been hit by a truck. Feeling like I didn’t get any sleep.

-sometimes waking with adrenaline all night

-occasional heavy chest – feeling like it’s hard to breathe but really able to breathe deeply – lasts all day.

-fluttering heart every once in a while

-frequent headaches and migraines (at least 3 times a week)

-sometimes bothered by noise or busyness in room

And now? Well, here's what a year's worth of hard, awful treatment has gotten me (especially on "off" treatment weeks):

-More and more energy. Not using wheelchair for outings nearly as often and able to run errands by myself and even with one kid in tow!

-pain in joints/legs/back ONLY (and only occasionally) on treatment weeks (when bugs are dying off and clogging my system)

-sleeping all the way through the night (this might have to do with the meds I take at night that make me sleepy :)

-no "heavy chest" feeling and no "fluttering heart" for the last 6 months!

-headaches and migraines (only occasionally) only on treatment weeks but not on "off" weeks!! This one is huge. I have lived my whole life with a headache it seems and migraines so so often and meds that didn't really help much for them. All along it's been the Lyme (&friends) causing it.

My most huge marked improvement in my eyes is the better energy. More energy makes you more cheerful and brighter and I just love being able to keep house a bit more when I'm not suffering through (the very needed) treatment weeks.

My doctor said we're almost ready to try three "off" weeks instead of two. But I'm getting ahead of myself.

For now, I'm just grateful to look back and see how this treatment for LYME has helped as opposed to all the other things I ever tried for my "mystery illness" or "fibromyalgia". Thank you, Lord for a proper diagnosis and a treatment that is helping me get my "life" back!

great

2011-08-26T12:53:00.000-05:00

This has been the second of my "off" weeks and I feel fabulous! More than I've ever felt that way before. I had a phone appt. with my doctor this morning and she also was so happy with me that I'm feeling better and better on my "off" weeks. So now she's going to tweak my current protocol just a bit by adding in another drug and backing off of some other drugs. She said the first "on" week will be a bio-film blaster and the second week will be sort of a "clean up" of all the bacteria that got "blasted" in the first week.

She said even though my body might be ready for 3 "off weeks" instead of two, we're going to stick with the 2 weeks off for now. I'm completely fine with this as I didn't even think she'd suggest 3 weeks off of drugs. And I don't want to jump the gun.

So I start meds again on Monday. It might be rougher since we're adding another drug but I guess I'll just have to wait and see.

And you know what encouraged me a lot this month? My calendar. It was chalk full of busy days. And I didn't dread them. Most of my months look stark empty. So I think a full calendar is a sign that I'm headed in the right direction health wise!

Next post -- my symptoms last year when I first got diagnosed with Lyme vs. the symptoms I have now. :)

loved

2011-08-24T11:22:00.001-05:00

This was a question I saw in Real Simple magazine this month and unlike other questions they ask, I had an answer immediately. Obviously we can think of Christ's work on the cross as the ultimate view of love, but when I thought about what the magazine was looking for, I immediately knew.

I've probably written about it before. In June 2006, Matt and I vowed before God and our 150 or so guests to love each other "in sickness and in health". It's funny when you are preparing vows and thinking about them and the seriousness of them, when you read about your promise to love each other whether you're healthy or not, you consider minor illnesses like the flu or cold and you kinda get warm fuzzies thinking about how you'll get to pamper your husband-to-be with some homemade soup and some TLC. You briefly consider the possibility of cancer or some other serious illness, but you're young, so those are fleeting thoughts that skip by without dwelling on the sadness of them but you know you are promising to stay even if that were to come about.

But we NEVER in our preparation for marriage even harbored an inkling of a thought about what would happen to us. We got pregnant within 3 months after getting married and were so overjoyed. Our first anniversary came and went and then we were holding our little Georgie in our arms. All seemed fine until I got gallstones 5 weeks after birth. That was the straw that broke the camel's back. A camel's back we didn't know existed until then. It was the beginning of a long spiral downward into what we now know is Advanced Lyme Disease.

It was many days of pain, misdiagnosis, another baby, confusion, more misdiagnosis, and ultimately watching my husband watch me wilt before his eyes. I went from a healthy 135 pounds to a sickly 105 pounds. I could see the pain in Matt's face when he looked at me helpless. He WANTED to help me. He didn't want to run away or run out on our marriage. That never crossed his mind. He was so affected with pain FOR me that he would often (and still does) just sigh and say, "I wish there was some way I could take your place."

Finally, 4 years into marriage we got an accurate diagnosis. While the diagnosis of Advanced Lyme disease isn't grim in the sense that you are sentenced to a slow painful death, it IS grim in the fact that you are sentenced to a slow, painful recovery. If Matt or I thought this was the easy answer to our years of frustrating misdiagnosed problems, we thought wrong.

The diagnosis came just in time. I started having partial seizures - something that left me scared and short of breath, just watching my limbs flail and wishing so badly I could just be unconscious for them. Matt would calmly be by my side and talk soothingly in my ear while trying to shield me from the view of our two little ones. I was embarrassed that he had to see me that way. Heck, he'd seen me in way more "compromising" positions that should have been embarrassing but weren't. But I think what embarrassed me about getting so ill was that I had always prided myself on how strong I was, how much endurance I had, how I could (usually) "keep up with the boys". And here I was not able to move on my own. I had to have help in the bathroom! I needed help showering! And, gasp!, I had to be pushed around in a wheelchair oh-so-often. I mean, it all felt demeaning.

But I'll tell you what, my husband NEVER made me feel demeaned. He helped me without a second thought, like it was his job. He's offered help when I was about to heave, picked me up off the bathroom floor and carried the full weight of me, and he's stayed by my side as I convulsed while neither one of us felt comfortable but had no idea what to do otherwise. He's shoved medicine in my mouth when I otherwise couldn't do it myself. He's cut up my food because my joints hurt and he's offered to feed me when he's seen me wilted at the kitchen table before my dinner. The thing is - it ishis job. He promised it at our wedding. But he has never treated it as a burden. Will I ever get to repay him?

It's made me think if I'd be so willing to do all those things for him if he was the sick one and he was the one in my place. Would I have? The answer is yes, but I am selfish. I wonder if I would have handled it with so much dignity and patience as my husband has. It's times like this when I am reflecting that I am just dumbfounded and in awe at what a wonderful God I have, that He brought Matt and I together. I can truly see His precise hand in the matter, knowing that I'd need this man and his humility and his servanthood in my life.

I'll tell you when I first understood the meaning of love in our marriage - - when my husband lovingly and without hesitation took on all the ugly parts of this disease that have made me physically not beautiful, emotionally not very nice (mean to him), and spiritually downtrodden. He must truly love me and THAT gives me butterflies as I realize he is imitating our Savior which is just how he was commanded to love me in God's word at our wedding years ago.

numbed

2011-08-23T19:10:00.002-05:00

I got dental work done today. My right side is numb to the world. Dribbling water and all. Funny, as soon as I started eating gluten free and using "natural" toothpaste, I stopped getting cavities. And the only thing I've had done between then and now was getting my wisdom teeth removed. I had Lyme then but didn't know it. It wasn't a terrible experience at all.

This time I had to get a crown. My dentist wants to avoid me having to have a root canal so he said a crown would be wise. So I did. I've heard so much about Lyme disease and dental work -- mostly bad. I don't even know why. The stuff I read seemed pretty confusing to me.

I know long-term antibiotic use can be bad for your teeth so I get them checked regularly and my dentist knows I am on antibiotics. But so far no problems except for needing this crown.

So anyway, I'm here to report that (as long as you have a dentist you trust) MY Lyme disease+dental work = smooth sailing.

Just my experience, though. Have you had any Lyme related dental problems?

prayed for

2011-08-20T20:09:00.000-05:00

I'm so thankful that someone has taken time to set this up. It's a great way to have even more people praying for you than are already. Strangers, but people who care and want to lift you up. Thanks, Praying for Lymies.

If you're a Lymie or want to pray for Lymies that you may not already know, join this blog so you can better pray for the many of us who are suffering.

Praying for Lymies

hairless

2011-08-19T05:29:00.000-05:00

I don't know about you, but being chronically ill makes it awfully hard to shave consistently. Taking a shower takes all the wind out of me usually (especially on treatment weeks). I shower not as often as I'd like and often forego the "shaving" part because of how much energy it takes.

Enter Moom - it's sugar based and water soluble so all you do is rinse with water afterwards and you're clean and not sticky. It doesn't rip your skin apart either. It is SO gentle and if you've ever waxed before, I can tell you this is quite different. Your skin is soft and smooth and it is WAY less painful than waxing.

It's 100% natural and is made up only of sugar, water, lemon juice, chamomile, and tea tree oil. I have very sensitive skin and I had no problems with it. It comes with some muslin strips that are reusable. After you've stripped the muslin/sugar based mixture off, you just rinse the muslin strips with warm water and it rinses clean!

It comes in three "flavors" :) Tea tree oil, Lavender, or Rose. And since the muslin strips are reusable, you can just buy a larger tub of the stuff without paying for the whole "kit". Here's my leg with a thin layer of the "Moom" on it. All you need is a paper thin layer to do the job, therefore, I think it's an economical choice as well:

Now you want to see the after-the-pull shot, right? That, my friends, is T.M.I. I can tell you I was amazed, though at how out of control my legs had gotten.

like I'm still recovering

2011-08-17T11:58:00.000-05:00

Proof of my blown veins. The one past my elbow goes up even another inch after the picture cuts off (it's hard to take a picture of your arm by yourself) :)

It's been what, 4 days? Now my arm is really bruising up. They've been really bruised to the touch ever since but today was the first day you can SEE the evidence. ugh.

But I haven't had that kidney pain anymore! My doctor's P.A called on Monday to make sure I was okay. How cool is that? Someone who remembers your call 2 days before and didn't even have your chart when she talked to you. Love that. She didn't really have an explanation except it might have been a herx? Maybe nerve pain? I don't think it was nerve pain. It definitely felt like kidney pain.

Anyway -- today I'm running slowly. The last few days have been filled with me being creative to get some stuff ready for a baby shower. For some reason being creative zaps me! But it's something I love to do. I have just a few more things to finish (creative-wise) and then I'll spend the whole day before and of the baby shower just resting so I can enjoy the shower for my friend.

Nothing major to complain about except my lack of energy. Thankful to not be in pain.

Praying for other Lymies today who are suffering!

hurt

2011-08-15T12:16:00.000-05:00

In more ways than one. I want to be careful how I tell this story. To tell it without so easily slipping into judgement of people who I honestly can't say I KNOW for sure were acting a certain way JUST because they happened to know I had a disease that most doctors in my state don't believe can be found here.

I had a fairly terrible week. Thursday I woke up and after Flagyl felt awful. Friday was no different except I woke up with an achy pain in my left flank (below your ribs but above your hip). Felt like I had definitely done something. But I couldn't remember what.

Saturday morning the pain was much worse and I had a very low-grade fever. I also was extremely nauseated. I went ahead and got my lymph-massage that morning and as the day went on the pain got so much worse that I couldn't walk without being stooped over. Now I've had kidney stones and this didn't feel like those other times but it DID feel like the pain was coming from my kidney. I tried heat and I tried ice and NOTHING helped. So I waited and waited and talked to my husband and thought of all the reasons I SHOULDN'T go to the ER and finally my husband said, "Call the on-call doctor at the clinic" (the LLMD clinic). So I did. I hate to bother doctors on their days off but I didn't know what else to do. If this was just a herx or something then I could avoid the ER.

The doctor on call just happened to be the one I usually see and I was told that it sounded much like a kidney infection and that it wasn't something to wait on. I should go to the ER just to be safe. So I did. My mother-in-law is here and was able to watch the girls so Matt could come with me.

The pain was even worse when we got to the ER. We didn't wait too long and got admitted. The first nurse came in and took down medical history (I always hold my breath after I tell them I am being treated for Lyme disease). That didn't seem to bother her. Now here are the facts (without judgement....hopefully):

-Nurse asked what meds I was on. I handed her a paper I carry in my purse that shows all the regular meds I'm on and antibiotics and told her currently I wasn't on the antibiotics. The meds took up a whole page typed. She took it. Looked at it. Didn't say anything. Started to type then suddenly left without saying a word and took the paper with her.

-After about 20 minutes the doctor came in with the quiet nurse who didn't make eye contact. He seemed friendly enough. He physically examined me including the "kidney tap" on both sides of my back. When he tapped my left side I nearly leapt off the bed. He asked what "level" of pain I was in and I said "level 8". After, he awkwardly asked if I had any medical conditions and I told him I was being treated for Lyme but wasn't currently on abx. He didn't comment and then said, "Well, I think you have a kidney infection. Every indication points to that. So I'll send a nurse in to take your blood". And with that he was gone.

-Next came in a totally different nurse and she was really friendly nurse. She said she was there to take my blood. She chatted it up with us and smiled the whole time. She left with the blood.

-Then came in another nurse who was also really friendly. She said she was there to take blood. I told her I already had blood drawn. So she said that she would start a line to push fluids and also administer pain meds.

-She found a vein, put in the I.V line and I thought it felt "sting-ey" but didn't think it was too out of the ordinary. Then she pushed morphine and zofran into it. It burned and hurt pretty bad. She turned to get another pain med called torredol. As she was preparing that I asked her if it was supposed to feel painful crawling up my arm. She said, "Oh I think it feels like a spider crawling up...." and she started to push the torredol before I could tell her it did NOT feel like a spider. The torredol caused me to arch in pain and cry out. It felt like she shot fire up my arm. She looked down and saw that my vein had blown earlier and now it was ballooning up like a huge 3 inch lump. She panicked and took the line out immediately. The pain subsided and she wrapped it TIGHT and then she went out to get more supplies to start another line. As she left I was in tears. I'm not a wimp when it comes to pain and I don't normally cry unless it is REALLY bad pain.

-She came back in and felt bad I had been crying. I told her it wasn't her fault and I fully believed that she could use another vein to pump I.V fluids in. She chose another vein and this time I felt the sting right away so I told her and she looked and sure enough, another vein blown. Now my veins do not blow usually. She apologized profusely and was so kind but said they had a 2 limit policy so now someone else would have to come in.

-The next guy came and used my other arm and got it in fine. I told him I couldn't feel any effects of the meds she had pushed before and that I was in as much pain and before. He said the dose probably wasn't effective since the vein blew and he would check with the doctor. He left.

-Twenty minutes later he came back very smug. He said they couldn't give me more meds. I understood....how could they know how much I got? And hey- I wasn't there for narcotics. I was there to make sure my kidney wasn't infected. He said he'd see if he could bring anything else for pain. He left.

-Twenty minutes later the doctor opened the door just enough to stick his head in and say, "Your blood work is fine. You don't have a kidney infection. You can go." As he retracted his head, I said, "Um, okay. Good, so no kidney infection so what is wrong?" He said, "I don't know." and tried to leave again. I said, "So, NOTHING is causing my pain? It's just NOTHING?" He said, "Um....yeah. It might just be a virus." and with that he popped out and we never saw him again. A VIRUS? That is ridiculous. Even my husband thought that was crazy. Kidney pain? We were thankful the blood work was fine but we both thought that a normal doctor would at least say, "Oh, so maybe your pain is muscular and we could try a muscle relaxer" instead of sending you away when you're still in level 8 pain.

-Another nurse came in to move us to another room to finish my I.V fluids and then we'd be discharged. We asked him again if he had found out if I could have anything else for the pain. He said he'd bring me TYLENOL! He left.

-He came in and offered the Tylenol and I kindly told him that I didn't need to take it because I had tried earlier in the day and it hadn't done anything. He left quickly.

-Finally another nurse came in and Matt told her that I really wasn't looking for narcotics but could she please ask the doctor if maybe they could consider it was a muscle pull and maybe prescribe a muscle relaxer? She didn't look amused but left and said she would talk to the doctor.

-When my fluids were finally gone she came back and gave us our discharge papers. We asked what the doctor had said about our question. She said, "Hmmmm, let me go look at your chart." Again she left and when she came back she didn't look me in the eye but said, "Well, we OFFERED you Tylenol and they SAID you wouldn't take it." So I told her that I had tried tylenol and it hadn't worked and that's why I said no thank you.

-She gave us our discharge papers and left.

I got up and hobbled out of there, still with no pain meds and wishing I at least knew what was causing the pain but OH-SO-THANKFUL that it wasn't a kidney infection. After all, this is my "off" week and I didn't want more abx and more herxing.

It was just so frustrating though. I claimed they were prejudiced from the moment they heard Lyme and saw my abx list. But there were no confrontations or words to that end. So I'll never know. But I do know it wasn't a great experience with the doctor or nurses. I've been to the ER many times before I was diagnosed with Lyme and they always did try to figure out what was causing my pain. I even went once when it ended up BEING a muscle thing and they gave me pain meds and a muscle relaxer.

Anyhow. We'll never know what it is I guess. I asked friends to pray that night that I would be able to sleep. And I did. And I woke up and there was only a remnant of the pain left. It had "mysteriously" gone away. My husband's theory (and I'm likely to go with it) is that it was a kidney stone because of where the pain was and since I've had them 4 or 5 times (I've lost count). But really we won't know.

I don't like THAT. I don't LIKE not knowing. It's frustrating but something that God continually works on me for. I need to be content that God did take care of me despite the aloof doctors and despite not knowing what was medically wrong.

I felt hurt that I was treated that way by the doctors and have been trying oh-so-hard not to blame it on the assumption that they were prejudice about my Lyme disease. I don't know that they were. My husband keeps encouraging me that way. (But, fyi, he totally sees how I could feel that way, so it wasn't just me. :)

And funny enough, that night as I went up to bed, I took the (very) tight band off of that blown vein, and by the time I had walked up the stairs and hit the bathroom I could feel the effects of morphine. I nearly passed out. lol. I crawled to my bed because I told my husband that if I stood up I'd throw up. I settled into bed and the morphine made my sleep very productive and made the pain all but a blip. I don't know if the band was just holding all that morphine she pushed in or what but for some reason I didn't feel it until nearly 5 hours later.

That's my weekend story. What's yours?

awful

2011-08-12T17:07:00.000-05:00

After I take my last dose of meds tonight with dinner, I will get a 2 week break! My body so wants this break right now.

I feel so awful, terrible, yucky, shaky -- and therefore, in bed. Thankfully, because of special friends, I get to get another Lymphatic Drainage Massage. These really do help get the toxins flowing to the right place and ultimately out of me. I'm hoping that I'll have two blissful weeks after this.

One of the meds I'm on can interfere with kidney performance and also mess with your iron levels. Therefore, they (the drs.) put you on a special prescription of folinic acid. But apparently with my last blood draw, my body showed that I was low on iron (I've never been) so they want me to take an iron supplement. Just another thing to add to the med list. :)

tired

2011-08-10T12:12:00.000-05:00

....BE-CAUSE, I haven't been sleeping well. This is normally not a problem for me and we think now that we've fixed the glitch in meds that was causing me to dream wildly and wake suddenly.

So anyway, when I lie awake there I figure God probably wants me to pray for people since I'm just laying there not able to sleep. So this particular night I did. I prayed for a lot of people but also myself. Not only for physical healing but for spiritual sanctification (which is an ongoing process). After that time with God I tried to sleep again but to no avail. So I read.

I'm reading this book and it probably isn't great to be reading about all the food, but I can't keep myself away from books about food. I'm a natural foodie and my husband is too. But what I noticed as I read, was that I kept being reminded by certain things in the book about my friends and family. So every time that would happen I would pray for them because I felt a tug at my heart to do so. God wanted me to keep praying.

"Many return dazzled by the casual Spanish approach to eating: dinner at midnight, the standup snacks at crowded tapas bars, the whole concept of the poteo- the multisop bar and food crawl from casual eatery to casual eatery, grazing for what's good, cherry-picking the best at each place ("a little bit, often") before moving on to the next place, and the next." This made me think of Casey and Alicia, how we used to have a "dinner club" and we'd try various restaurants and rate them in our little book way back when in college. How much they enjoy food like us and how they would be THE people we would choose to go on a Spain eating-adventure with someday when I'm well. So I prayed for them. They are going to be missionaries in Mexico. There is much to pray about for our dear friends as they prepare to go.

"It is no coincidence that so many chefs have been visiting Spain lately, only to return with an altered worldview." My friends the Pidals just moved to Spain to be missionaries there. They've got two boys my own daughters' ages. My heart prayed for them and the challenges and the good things that are happening for them there.

"Where poorer nations have a tradition of cooking well because they have to, we have choices. It is always better to make the most of what's available, to cook well." This reminded me of my friend Andrea who buckled down and made sure her family was eating right. With allergies abounding in their house, she knew it was time to make a change and start using her time to get her family healthy. She researched and researched and experimented and experimented and now she has a sort of routine. But this means she spends most of her time preparing fresh food and food that will nourish her kids' bodies. It's something I'd love to do someday when my energy will allow - because, believe me, it takes energy to do that kind of work for your home. So I prayed for her. Sometimes you might not know exactly why someone would need prayer but you pray for them anyway when they come to mind.

"If, as in the case of Kobe beef......" That's all I needed to read to spark memories from my trips to Japan and to bring to mind the faithful church in Osaka where I was privileged to be able to serve alongside a few times in college. And I think of the Okadas especially and Okada Sensei who really lives out the the call to be a light to the world and his heart and hard work to reach unreached people in Japan. And for his wife Marcia who supports him and raises their sweet children. I pray often for their whole family and for the church there.

"Don't get me wrong. I like free-range; it's almost always better tasting. Wild salmon is better than farmed salmon, and yes, the farmed stuff is a threat to overall quality." When I lived in Montreal, QC for a brief period of time before I got married, I was staying with my Aunt and Uncle. My then fiance (now husband) flew up from New York and stayed the weekend in their home. It was the first time they met him and I had so much pride and hoped they would think as highly of him as I did. We sat down to dinner--some salmon that my Aunt had made because she knew Matt liked salmon and she knew this meal was going to be a blessing to him because of the day-after-day not so bad, but not so good gruel he was used to eating at his military school. We prayed, began to eat, and started talking about salmon and my shining fiance says as he takes a bite, "Isn't Pacific salmon supposed to be better than Atlantic salmon? I like the taste of Pacific salmon SOOOOOOO much better." While chewing on his bite, my aunt said, "Oh. Well, this is ATLANTIC salmon." Matt tripped over his words trying to say that he thought the salmon my Aunt had cooked was really tasty and he thought it WAS Pacific salmon and he was so sorry that he might have offended her. We all had a good laugh over it but he has always lived with this sense that my Aunt must have felt SO bad about it. If I mention the story to him to this day he hangs his head in embarrassment. But anyway, it reminded me of my Aunt and Uncle and cousins and I prayed for them.

"That one can create a pocket of calm, casual, yet sophisticated pleasure, of culinary excellence smack in the middle of --yet comfortably removed from--the carnage and ugliness below. I found, I think, my perfect metaphor, had my final Vegas epiphany on my last day in town, as I hurtled face-down at accelerating speed toward the surface of the earth, free-falling from two miles above the desert, a Flying Elvis strapped to my back." The Van Tuyl family. Such good friends and Jeff was the one who turned me on to Anthony Bourdain....his SHOW, though, not his books. So as I'm reading the above I think "Jeff would love this book. I've got to tell him about it." I spent a lot of time with Jeff and Carrie and watched as their family grew. They watched me go through a long-distance relationship with my boyfriend (now husband) and gave great advice as I'd have the normal ups and downs of navigating something as tough as dating someone who lives all the way across the country. We all shared the same taste in movies and tv shows and would pass along names of shows or movies we thought each other would love. We still do to this day. They watched us get married; Jeff performed the ceremony. We've moved apart (state wise) but have still managed to keep up through telephone and even occasional visits when we lived within 3 hours of each other. Such a sweet family and one that I pray for often. As Jeff recovers from leukemia and as Carrie faithfully tends to her children, I just see so much faith and trusting and know that doesn't come from nowhere. It comes from God and it comes from our prayers. So I prayed.

"'I was jacked up on some hideous sugar high from those Twinkies. And the Oreos! They deep-fry Oreos here, Bourdain! I was helpless under their influence.'" Now this one, this one came just as quickly as all the other ones that made me want to pray for people but it wasn't because of some attached memory I have of a sugar high associated with them. It was the "deep fried Oreos" phrase. It reminded me of the Puyallup Fair in Washington State. How when we lived there, they had a deep fried station that actually did deep fry Oreos and Twinkies.
We have wonderful friends in Washington. And I knew who I thought of at that moment in Washington. Our friends the Pattersons. They have precious children all around the ages of my girls and Georgie just LOVES them. She still can't stop talking about them even though we don't live there anymore. We still Skype with them and send letters. And Ruth and Jeff were such an encouragement to us when we lived there and had such an understanding heart about my disease. They said we could think of them as family and never feel bad asking for help or babysitting. It's nice when a friend who ISN'T sick, truly understands what you need as a 'but-you-don't-look-sick' sicky. I knew exactly what to pray for.
They were AT THAT MOMENT, in Ethiopia. They are in the final stages of adopting their son from there and they were going to MEET him face to face. I prayed that it would go well and that their court appointment would run smoothly and for every other part of visiting and navigating a new country. Ruth and I prayed for a miracle that would allow her and Jeff to be able to go to their court date in the beg. of August. All things were pointing to an October court date. With two weeks to go before the August court would close, she called me full of joy and said that it WAS a miracle and that God had made it possible for them to leave in two weeks and get one of the last court dates in August in Ethiopia before they closed until October. We praised God together!

---OTHER WA. FRIENDS: Then a tag-along to that prayer was made for my friends Gill and Tyler who also live in Washington. Thinking about Ethiopia made me think about the fun times we had when they would take us to Ethiopian food restaurants and how GOOD that food is and how I want to go again with them someday if we ever get to go back and visit or if we ever move their permanently. Gill is one of my best friends and has always kept me in prayer and so selflessly helped with my girls as I started Lyme treatment. She even came out for an extended visit just to help me with the girls when she knew I'd be on meds that would make me sluggish. We send cards, letters, email and text ALL the time. Good friends keep in touch even if there is distance between them. I prayed for God's provision in their lives and for hope and trust in the plans God has for them. Everybody needs that prayer, don't you think?

There were more - Adrienne and her family, Ora and her waiting on test results, Julie and Matt who are expecting their first baby, the Armstrongs who are separated for 2 months because of the military, the Barber family, my friend from college Cece, my sister-in-law Melody and Spencer, Alyson, and other Lymies who need prayers right now......I could go on and on but I imagine my regular readers are quite bored by now, so I'm sorry.

I guess the point of this post is to say, when you're up in the middle of the night because your sleep meds don't work and you are in pain or misery just lying there in the dark, use the time productively. Even though you're laying there, you can still bless others. Start praying for people and pray for yourself and your spouse and your kids. It's time not wasted and beats staring at a darkened ceiling focused only on the pains shooting up your legs or your racing heart or nausea.

geared up

2011-08-08T05:05:00.029-05:00

Week 2 of meds in this cycle and then I get a two week break! yay!

Last week was definitely not great but not horrible. I only had one horrid day and that was Thursday. The first time in the week that I took Flagyl along with my other meds. It literally knocked me down. I felt like I had been in fisticuffs with some "mean guys" (as my little girl would say). I couldn't get out of bed and I couldn't sleep. I was just frozen in various positions in awful pain. I'd switch positions when the last position didn't help anymore. Like the worst achy-flu you've ever had multiplied x100. My mother-in-law is here and I'm so glad she was here for that day because I just texted her from my bed (she was downstairs) and she brought me lunch and water and then basically just kept the girls going on with their day away from me. It was one of the darker days for me during this whole ordeal.

The next day I finally got up the nerve to try a new masseuse (I hadn't been to one since we moved here 8 months ago). It's hard to find ones that do lymphatic drainage massage! But I found one and didn't know after the day I had had the day before whether I'd be able to make it by myself. My husband was standing by at work ready to come take me if I needed. But I managed to drive myself over there and walk in.

He did a few different techniques than I was used to but I'll tell you, I had results immediately. I could walk straight. Didn't mean I could just go dancing around and spending all my energy, but I could walk without holding on to things! And I had a little spark....just enough to sit and chat with the family that night instead of holed up in my bedroom. And I had a way better weekend than I would have if I had not gotten the massage. And thanks to some kind, thoughtful friends of ours, I get to go back next week on them! Such a blessing for us! And also, the masseuse saw that I'd be coming in a lot because of the nature of my disease that he worked out an awesome deal for us so we are going to save $20 per session on each visit. That is AMAZING. Thank you, Lord!

This is how I spent my weekend -- super drooped. While I felt fairly well and even ran a quick errand with Matt's mom, my eye decided it needed to act up. It has never been that droopy and it lasted most of Saturday. Woke up and progressively it dropped and dropped and my daughter even asked, "Why are you closing your eyes while you're reading?" since she could only see me from the side. It FELT heavy and even my cheek did. I'd try to open my eyes wide and only one would. Ick.

It's was a lot droopier than the last time I mentioned it a few weeks back:

like I've come to terms

2011-08-03T10:53:00.001-05:00

Come to terms with what, you might ask? Lyme disease? Not quite. I still struggle every once in a while with the fact I have it and how it affects every aspect of my life.

No, what I'm talking about now is my wheelchair. I knew I needed to use it, and I would, but it was SO humiliating to me! It shouldn't have been but I felt too young to need to sit in it without having any obvious signs of distress showing on my body. And people would look down at me with pity in their eyes. Seeing a young mom in a wheelchair probably does that.

You know how I got the wheelchair? I thought one day early in to treatment that a wheelchair would be helpful and allow us as a family to get out more and go on walks, etc. But we didn't have one. I looked them up on craigslist. I was shocked at just how expensive USED ones were! I put it out on Facebook that if anyone knew of a wheelchair that wasn't being used, then please consider letting us buy it or borrow it. I knew we definitely would not be able to afford one. I lay in bed that night and prayed that somehow God would provide us with a wheelchair.

The next morning my sister called. She was set to fly in to help with the girls in a few days. She said, "My in-laws have a really nice wheelchair that they haven't used in years and they said they'd LOVE for you to borrow it." God really provided for us! But she was out of state. HOW to get it? Well, she found out that even if you aren't physically sitting in the chair, you can get it on the plane for free! So when she came to visit she brought it to us!

I am SO thankful for the generosity of her in-laws. How kind and gracious!

A wheelchair to a Lyme patient is such an encouragement. It allows us to experience more, even if it's not much. I was confined to the house. Even walking around the house seemed to stretch my limits of strength. Church was hard to get to because of the walk from the car to the inside of the church! A wheelchair allowed me to be more social.

It also helped when traveling on planes. Most of the trips where to my doctor but some were to see family. I would have never been able to walk the airport or stand in lines.

It took a LONG time to come to terms with my embarrassment of having to be wheeled around. I mean, you feel so helpless and know you LOOK helpless. My husband jokes that it's my "adult stroller". I guess you can come up with that kind of joke when you wheel around two young kids all the time :). It doesn't offend me because it's him saying it.

So it's been almost a year and I realized as I was being wheeled around downtown the other day that I don't care. The benefit of the wheelchair outweighs the embarrassment of sitting in it and now I just smile at those pity-face givers who walk by and look at me instead of hanging my head in shame.

Next up - getting a shower chair (showers are extremely depleting energy-wise). I have dug in my heels on that one but it is becoming more clear that it would be helpful. So we'll see. I'll tell you when I've come to terms with THAT! :)

not prepared

2011-08-02T16:40:00.000-05:00

It's been a ho-hum last few days. I keep thinking I'll write a blog post but my energy is waning so I just haven't got it in me to write anything of importance. Maybe I'll try tomorrow.

But I just wanted it to be known that I'm not down and out. My body is fighting like crazy with this week's meds, but besides that I'm just laying low.

I hope to be back in a few days :)

brainy

2011-07-29T05:04:00.040-05:00

I don't struggle too much anymore with brain fog. I did at one point for a while but I do think that the Lyme treatment has helped with that a lot. I still hit the fog every once in a while when I'm on meds but for the most part I try to do my best when I am able to keep my brain thinking. I do this by solving puzzles on my Kindle :) Now, you don't have to have a Kindle to be able to play these games. You can have a regular old computer and download Kindle for PC or Mac onto your machine (for free). And of course you can do old fashion stuff like crossword puzzles, etc. if you don't want to sit in front of a computer.

But what I'm saying is that when I decided to make a conscious effort to exercise my brain a few months ago, I noticed great improvements. At first it was just maybe a few minutes a day I could handle. Now some days I can do multiple rounds of 15 minutes stints (with breaks throughout the day).

Here are my favorite brain exercises for the Kindle:

Pixel Perfect Puzzles (and it's $0.00!)

Shuffled Row (also free!)

Every Word (again....FREE)

I guess what I'm saying is that it's so easy when you feel awful to just hole up on the couch (because we don't have much energy for anything else!). So when I COULD handle some brain stuff, it made me feel like at least I was being somewhat productive even though the rest of my body couldn't physically be productive.

But again, I know the feeling of overwhelming brain fog and during those times it would have been IMPOSSIBLE to attempt any of these games. If I tried writing a grocery list or typing a short email, words would come out backwards (like I was dyslexic!!), and just trying to remember what I was going to say next was often a problem. So don't feel bad if your brain is not up to exercising yet. My body still isn't (at least anything more than a walk through my house or some rebounding on the trampoline)!!! :)

gifted!

2011-07-26T22:31:00.028-05:00

Someone special sent a gift.....a gift they knew I wanted :) It was so fun to receive. Even though it came from Amazon, it was wrapped!

It was a mini-trampoline!

Why would I want this you ask? Well I've been told by a few people, including a lymphatic drainage masseuse, that a form of mild exercise on the trampoline called "rebounding" can be so beneficial to getting your lymph system flowing. Just sitting here most of the day causes all the toxicity to just build up in my body (the lymph system) so exercise is great for detoxing. Only, I hardly have the energy for anything of the sort. Rebounding is something I can do. Even if it's only for 2 minutes a few times a day (and I definitely hold on to something or else my dizziness would cause me to fall), it helps. Soon I'll work myself up to more minutes a day. But let's start small.

Anyway, thanks, Mom for thinking of me! It's always fun to get packages and gifts! It brightens my day!

okay

2011-07-25T10:46:00.000-05:00

Yeah. I'm not doing too bad. The last week wasn't horrible and this week isn't shaping up to be horrible at all. Either the last round of killing meds did something, or this is a fluke. But whatever it is, I'm just so thankful that TODAY I feel okay. I'm still working on not "over doing it", but I'm getting better at that.

I've had more sugar than I should have last week and this. Sugar + Lyme disease = the Lyme bacteria's dream. So I need to be better than that.

Well, that's all I have to say today unfortunately but I'm sure there will be some bigger posts to come.

Still waiting on a really good interview that I think will encourage most of you who have kids.

Here's hoping to some rays of sunshine in your rainy days!

always cheerful

2011-07-22T04:36:00.003-05:00

.....NOT!!!! That is one thing I wish I had the gift for. Always keeping the bright side of situations. But unfortunately I don't. Take the other night when I said I made dinner? Well as the night progressed and the meal was presented I felt more awful and more awful. It was clear to me that me making dinner was a bad idea. Being on my feet that long and stirring and mixing, and cooking and baking. My body wasn't ready for it and I pushed it. All these thoughts came to me about how I had secretly hoped that making dinner would show me that I was not as sick as I thought I was. And now those thoughts were dashed. I had set myself up for it.

As I lagged over my plate to finish the last bite my husband said, "You should go rest now." I slugged away and mumbled dolefully, "I'll NEVER be able to make dinner will I? EVER!!" and my husband said, "Not with that attitude you won't." I wanted to go off and say, "It doesn't even MATTER my attitude, all that matters is how my BODY feels." Ho-hum, woe is me. But I did get his point.

Whenever I have this kind of attitude, a little prickling hits me in the mind reminding me of the verses in Proverbs about how good a joyful heart is for your PHYSICAL body:

"A joyful heart makes a cheerful face, but when the heart is sad, the spirit is broken." Prov. 15: 13
"A joyful heart is good medicine, but a broken spirit dries up the bones." Prov. 17:22

It's hard to do a one-eighty and immediately turn to joy but I do pray that God will help me in those moments. Because having a joyful attitude DOES make my body feel a lot better, even when I'm feeling crummy. When I'm at my worst (attitudinally) I often will start thinking of all the blessings God has placed in my life a that moment. It helps but I confess it doesn't always cause the full change it should.

But I think we should try in those moments of being "down-on-ourselves" for things we obviously can't change about our physical state, to CHOOSE not to dwell on them. We have that choice. You can choose to have a pity party or you can try to make lemonade out of a lemony situation that isn't going to change. You can pull yourself out of it by consciously making the choice to be grateful, or thankful, or joyful, or even better yet - choose to focus your mind on helping someone else who might be struggling. Sit down and send them an email or snail mail with some encouraging words. This takes the focus completely off of you and your slimy pity pit and instead showers someone else who might be in the "pit" with a glimpse of cheerfulness. I'll tell you, it does wonders for me. Because I see others who struggle with things similar to me and others who struggle with things different from me but I know we all share the same propensity -- the propensity to feel discouraged and I don't know anyone who would say that a kind word or two or fifty didn't help lift their spirits.

So I guess I say all that to mean, when you feel down on yourself, take a moment and send me an encouraging email. Okay? We'll all benefit from it.

worn out!

2011-07-20T04:12:00.018-05:00

So this week started off great. My first of two "off" weeks (off of medication). I had a little more energy and generally felt pretty good. Good enough to make plans this week! Not much of me going out but of having people here.

We had friends over for dinner the night before and it was SOOOOOO fun. Yesterday I woke up and still felt pretty good. So I did a little extra yesterday (took on a simple sewing project and finished and made dinner!!!) and I think that's what got me to sit back a little.

oh yes....it's there.

I don't feel defeated or back into my shell on the permanently dented spot on the couch that conforms to me perfectly, but it was enough of a wake up call to say, "Heather, take it easIER." So that's what I plan to do today. Rest rest rest and enjoy my girls without the shroud of "ick" on me or the irritability that can be present when I feel so so physically awful.

Oh, Lyme! You will not get the better of me! It is SO important for us who have these illnesses to really "listen" to our bodies. It WILL tell you when you're overdoing it and if you don't listen to it, you will pay for it generally very soon after. So I'm going to "listen" because I still have the rest of the week ahead of me and a whole OTHER week after that to feel "good" before I get on the meds again.

Thanking God so much for the healing we are seeing taking place. Even if it is very small and hard to see at times.

thought of

2011-07-18T04:29:00.120-05:00

8 Ways to Encourage Your Chronically Ill Friend (from a distance)

(and I know these from experience. I've been asked several times by different people what THEY could to do encourage us from a distance)

1. Pray for them - you don't know how encouraging this is to us.

2. Buy a gift card for Starbucks or Jamba Juice or some place like that you know they think is a treat (you can ask if you don't know). I was given a Starbucks gift card last year by someone because they know that my husband and I love to go there as a treat. Every time I pulled out that card to pay I felt encouraged by the person who gave it. And even though the amount on the card wasn't that much, it still felt like the card kept giving way longer than it should have because I never kept the receipt that said how much was left on it :) By the time it had a zero balance I was just so thankful it had lasted THAT long :)

Inside this bubble-wrap mailer was the gift of a French Macaroon
(gluten free) from my favorite French bakery in Los Angeles.

3. Send an encouraging note through the mail, even if it's short or just says "I'm thinking about you". It's awfully nice to receive snail mail and packages when you're not feeling well. My dad's Aunt has been really good about sending cards at random times. They always have simple, yet encouraging words in them and somehow always come on a day I really need it. Now whenever I see the return address and it's her, I smile and am ALREADY encouraged and get so excited to open the card.

4. Find their Amazon wish list (if they have one) and send them an unexpected gift of something they've been wanting. Lots of people with Lyme and other illnesses struggle financially so they don't often get to buy things just for fun or even things they NEED. Sending them a gift from a list they made or even sending a gift card to a store you know they love can be really special for them.....it doesn't even have to be for a high amount; a $5-10 gift card to a store can still brighten someone's day. I know that I, and some other friends I know, put things on an Amazon wish list mostly for fun or so we don't forget that we've found something that we'd like to buy at some point when we have a bit more money. And I also know that if you aren't sure what stores your friends love to shop at, it doesn't hurt to ask them.

5. Send them a random hand-picked care package. One of the most encouraging things I got one time was from a girl I'd never met. She'd found my blog a few years ago and had been struggling with some undiagnosed health problems and she found encouragement through my words. She emailed me and it turned out she went to a church where some of my college friends went. We would email back and forth and she prayed for me and I prayed for her. One day I got a package in the mail from her. It was SO fun to open. There was an encouraging note, some of her favorite gluten-free treats, a "mixed tape" cd of her favorite encouraging songs, a candle, and a few other little things. It made me feel so loved to get such a thoughtful package from someone I hadn't even met!! And it's ALWAYS fun to get a package in the mail, isn't it? I still have that CD she made and I listen to it when I'm most "down".

6. Send encouraging words via email/Facebook.

7. Give them a call and chat; tell them funny stories about what's going on in your life. But be mindful that when you call they may not be up for staying on long or for talking at that moment. One of my friends always begins our calls with "I don't want you to use up all your energy on this phone call so tell me when you need to get off." Another says, "Can you listen? I have some funny stories." and she doesn't expect me to talk if I'm not up for it and I just LOVE hearing about her day or funny kid stories she tells me.

8. Pray for them. Yes, I said it twice. This is really the most important thing you can do for someone who is chronically ill. Pray specifically for healing, ENCOURAGEMENT, and patience, not only for them but for their spouses and/or children.

nostalgic

2011-07-15T05:03:00.002-05:00

A lot of us "Lymies" used to be very athletic. A healthy weight and the kind of people who told the doctor at an annual check-up that we exercised a few times a week at the least. Good hikers.....in fact, so good that we became ill by it. Because of that itty-bitty insect called a tick that likes to camp out on a long (or short) piece of brush and climb on to a warm body that passes by.

I know that's not how all people who have Lyme got it. But it's how I got it. Hiking...camping...in the most beautiful place in the world (to me). In the Sierra Nevadas....more specifically in Sequoia National Park. High high up where the giant Sequoia trees grow and the forests are lush with green. I was camping there before I was even born!!!

I believe this was the year I was bitten by THE tick. I probably even got it in this meadow. It's crazy to think about now!

And between then and now (nearly 30 years), I have been camping there just about every year (I think I've missed the "annual trip" three times at the most). It's lovely there and our family hasn't had to even think twice whether we'd meet up there again the next year. We've now brought our children there and now our parents are grandparents there.

This is the place that condemned me to the state I am today. A tick bite from one of those many camping trips is what gave me Advanced Lyme and it's co-infections.

It's strange, it's the first year since being diagnosed that I haven't been able to go. We usually make the cross-country trip to meet up with family there but this summer I am too ill. Last year we went on our yearly family camping trip there 3 days before I was diagnosed with Lyme. I knew I was probably going to be sealed with that fate of a diagnosis so I was even more aware that year of the GREEN; the FOLIAGE; the MEADOW; and the DEER.

They stuck out to me like a highlighted paragraph on a page. When I looked at them I just thought, "Check yourself and the babies for ticks." If Georgie walked through our campsite (which was pretty much only dirt and rocks) and passed by a lone frond growing near our campsite, it took all that was within me to not run over scoop her up before her little leg could brush against the grass. I was a little compulsive about it.

We went on a long, 14 mile overnight hike last year. It was the last hike I would take for quite some time and for the foreseeable future. This was backwoods hiking; not a real trail to follow. It took a lot for me to do it.

I don't think I told anyone (well, maybe my husband), but I was frightened and had to pray and calm myself down the entire hike. The first hour of the hike if I felt any sort of tickle on my leg or arm I'd slap off or brush it forcefully. Usually it was nothing. I kept mentioning to our little troupe (brothers and sisters) to "check for ticks".

Look at where we had to set up our overnight tent! The MIDDLE of a meadow!!! Imagine my fright.

And in this picture we are sitting on gathered foliage to pad our seat. I remember being so afraid to sit and relax after a long day of hiking because I felt that a tick could be crawling up my clothes at any minute. Matt helped me calm down.

And NOW -- now that I am in the throes of the ugliness of what the disease can really do to you, all we have to do is drive BY a greenbelt and I think, "Evil ticks", see a deer and think, "Mean deer", hear someone mention hiking and think, "Make sure to wear light colored clothing". I have been a bit obsessed.

But wouldn't anyone be who has been hurt by something that was preventable? Now, what I saw happening to myself was my fear becoming large and overwhelming. To the point where I was frightened to even THINK about camping or hiking because I just couldn't imagine how I'd be able to keep track of everyone in tick areas or if I'd even be able to SPOT a tick on my own kids and husband.

But like I do with all my fears, I walk into them, trusting I've got someone looking out and caring for me. I know fears are partially irrational. I've learned to combat fear, you need to speak the truth to yourself (or let someone else speak it to you). I told myself that MANY people safely hike and camp and that for all those years we've been camping, I am the only one in my extended family who has gotten a tick bite (visibly). I am the only one ill from it. God spared the rest of my family. And I know He is in charge of how things turn out. I told myself you can easily be vigilant about ticks, use the right bug repellant, wear the right clothes, do thorough "tick checks".

What has happened to a seemingly overwhelming fear has turned into something I'm now a master over. I actually look FORWARD to the day I am physically able to start hiking again and the next time we can go camping. I know a lot more now about tick awareness and I just LONG to be back in those beautiful woods and meadows. The beauty of enjoying God's creation now overpowers my fear of ticks.

Conquered the mountain!

The Great Divide.....stunning.

But, this doesn't mean I don't still drive by a greenbelt and say, "evil ticks!" or see a deer and say, "mean deer!" but I think in all bad situations it's nice to have the thing that made you sick (a tick) to teasingly curse at.

flower'd

2011-07-14T04:31:00.002-05:00

Look at these lovelies. As you know I've been really struggling this week. Especially with some painful rashes that flare the moment I swallow one of the antibiotics. Seems allergy to me, but my doctor is pretty confident it is part allergy, part herx. So for now I'm just on Zyrtec every night (and that has helped considerably with the rashes).

A few nights ago I got what I thought was a shingles rash. I've heard if you go in early and get anti-viral meds, you can have a completely different experience with shingles than someone who goes without them. Meaning -- less pain. So I trekked myself to the ER. It was a "perfect storm" night....husband was home to watch the kids and I had my window of opportunity to go get checked out without kids in tow. So I did it -- within two hours of getting the rash.

I was pretty trepidatious about seeing an ER doctor. I've heard so many bad stories from other Lymies who say their doctor didn't believe they had Lyme. So I prayed that my doctor wouldn't be one of those.

He was very nice. He was an older doctor and upon hearing I was being treated for Lyme and hearing my med list, he seemed a little taken aback. I didn't know how to size him up. He asked me how often I take the antibiotics, etc. and then seemed to find me more credible when he found out I wasn't just stuffing myself with antibiotics every single day of my life and that my doctor had me on a lot of safety supplements and stuff to prevent things like candida and other problems that arise with long-term anti-biotic use. He became a little more friendly and seemed to grow more confident that I wasn't making it up or self-treating.

He took a look at the "shingles" rash and said that rashes were hard to deal with. No doctor wants to get a "rash" patient (unless they're a dermatologist). He said if he was going with his gut he'd say it was shingles based on my complaints about it and how it looked. So he gave me anti-viral meds. He also prescribed a steroid and pain meds just in case. But very surprisingly he told me NOT to take the steroid before talking to my Lyme doctor. He somehow had the knowledge that steroids might be bad for Lyme. I was already thinking, "Well, I'm not going to take the steroid." I was pleasantly surprised at his knowledge.

Within that visit with the doctor, a new rash popped up within seconds. This was far different from the shingles one and the coincidence was that I had just taken my antibiotics before I headed to the ER. He rightly recognized that it could be a reaction to one of the antibiotics I'm on. And he told me to also call my doctor about that after describing to me how this particular antibiotic can suddenly show signs that you're allergic even if you've been taking it for a year.

So my first experience with an ER doctor while having Lyme went swimmingly well.

Did you know my girls JUST got their chickenpox vaccine? And they ask you before if there's anyone in the house with a compromised immune system. I always forget to say, "Oh yes. It's me." The doctor said it's not out of the realm of possibility that I got shingles from the girls just having the vaccine because it's a live-virus.

He left me saying, "Take the anti-virals and watch the rash.....if it doesn't behave like shingles, then maybe you don't have it after all and then stop taking them and see what happens."

So I'll tell you this -- my "shingles" rash doesn't hurt or burn anymore and it is NOT continuing to spread BUT it still LOOKS like shingles. So I'm not convinced it ISN'T shingles but I'm wondering if it's yet another one of those weird "Lyme things". Lyme and the treatment for it can cause some pretty strange stuff to happen to your body. So I think this could be just another odd thing my body is doing because it's all revved up. Settle, down, sweet immune system!

So after those days and along with that ER visit and having the rashes, I have also been extremely weak and shaky and barely able to make it through a day. Someone knew I needed a pick-me-up. Didn't my husband pick out beautiful flowers? They add cheer to my day when I wake up and see them first thing downstairs :)

I'm so thankful for a thoughtful and caring partner in life!

like a movie day

2011-07-13T05:30:00.001-05:00

What's she watching? Blue's Clues!

Some days are just deemed "movie" days. And my oldest girl gets to watch show after show until I can pull it together and try to help her be creative. A "normal" sick day for me includes her being allowed to watch one 30 min. show in the morning and MAYBE a movie in the afternoon. But really really bad sick days are quite different.

So until my next "normal" sick day, I'm crashed on the couch with her.

hopeful

2011-07-12T01:11:00.002-05:00

(Ironically, this is a bad day for me.....2nd week into "ugly treatment" (as I'm calling this protocol) and almost finished with the week and I'm already wishing I could throw in the towel.....but my spirits are still hopeful that this is doing good to get me to the end of the tunnel.)

Someone asked me the other day how my "hope" was that day. With my Lyme (as I suspect with other people with the disease), my hope goes up and down daily. It doesn't even really depend on if I feel bad. Some days when I feel absolutely terrible, I still have hope; hope that there is an end eventually to all this misery (even though I don't know when that will be).

Hope that I again will look like this (taken 5 1/2 years ago):

Bright, happy, healthy eyes (it's all in the eyes, isn't it?)

Instead of this (taken this year):

Sad, sunken, droopy eyes

Well, I do have another kind of hope. The hope in the promises of God. That he won't forsake me (Ps 9:10 Is 41:17 2Cor 4:8-10) or leave me during this trial, that His love is never failing (Ps 13:5 Ps 119:75-76), and that some day I get to enjoy Him forever in heaven (without pain or sadness!) because I believe in the work Jesus did on the cross for my sin (Jn 3:16 Rom 6:22-23 Rev 21:3-5) .

But the hope I'm talking about today is the stuff that helps you get through a day sometimes when you're really struggling physically, not that the other hope isn't there, but this is the hope about having an end date. Like when your belly is swollen with a baby and you just wish that darned thing would come out because you KNOW he/she will provide so much joy and you will be out of your physical misery of carrying such a load :). You KNOW there's an end in sight....you have a due date to hope for.

I used to have despair (and I still do sometimes) because it seemed like I couldn't "see" an end to this illness. It seemed so far away and foggy and ambiguous because with treatment I wasn't feeling better. I mean, I had little breakthroughs but nothing to tell my heart "You're getting better!!!!!!" Because with Lyme, often it is one step forward, two (or three or four) steps back. It's hard for a new Lymie to understand this. So when I had a day of feeling "good" it made me get excited that I WAS getting better, only to be slammed down the next day with crushing fatigue and pain once again. It took a few of those scenarios to realize I should probably just not get excited about those good days at all....despair.

And then the farther I went on with treatment, I was eventually able to see how actually the little breakthroughs actually were significant even if I crashed the next day because if I looked at myself at the same time the year or two before, I hardly EVER had good days. So while it's hard to really not be able to see an end "date" of when I will feel normal again (no one can predict that except God), I've learned to not get overly excited or think about a "good" day as a huge step toward the end game; or get greedy with them like I think I need to hoard it since they are so few and far between.

Instead I take those "good" days and peacefully and thankfully relish them like sunshine after days of stormy weather; not worrying about what tomorrow holds. And I say to myself and to my God, "At least I feel good today."

intrigued

2011-07-11T09:36:00.001-05:00

Today I got my safety labs done. I go in every 2-4 weeks for routine blood work so my doctor can make sure my body is handling the treatment well. Only once (actually my very first safety lab) did they call me and tell me to stop meds immediately because my white blood count was abnormally low. They said it was pretty normal for that to happen and that after I got tested again the next week and those came back normal that I could start up again.

So I've had my share of "pokies" (as my eldest calls them). But this time a very intriguing thing happened. As he began to draw the blood my vein started vibrating. The whole time (three tubes worth of time), my vein alternated between vibrating and not vibrating whether or not he slowed down the flow. He said it hardly ever happens but basically the veins can be thought of as a series of pressurized tubes and before he inserted the needle and vial to collect the blood, a tourniquet was applied to congest a part of the the "tubes" so they are full and congested now. So when you pull the blood out of one of those pressurized veins, the pressure is released so sometimes it will vibrate as the pressure decreases. Now THAT was easy to follow, wasn't it? Anyway -- it made sense to me when he told me about it. The pressure was causing my vein to vibrate. It felt weird. And he could feel it with his hand nowhere near my vein but on my arm. Crazy stuff.

Has that ever happened to you?

shaky

2011-07-08T05:20:00.001-05:00

Well, for sure these last 4-5 days have really walloped me. At the moment I have got THE worst headache and my whole right side is shaky. It's always only my RIGHT side. That is the side of my face that droops too when my body is particularly fighting hard.

Last night my RIGHT leg wasn't working properly so when I tried to walk I just looked funny. It wasn't a limp....it was almost like my right leg didn't want to bend very much so I looked plain silly to my husband and brother. I also veered a lot - trying to WALK straight but veering one way or another (which means walking into walls or falling into them). It's why I walk terribly slow when I feel like that; going too fast has resulted in some bruises.

Anyway -- I don't always shake or tremor. It usually happens when the antibiotics have packed a punch and that seemed evident on the second day of taking antibiotics. Then hit Thursday and Friday which are days I take a "cyst-buster" drug and there's a whole other world of debilitating symptoms to explore. Not cool.

I just keep thinking back to every new round of treatment that I've done -- the beginning is the hardest (for me). As each week of treatment goes on, the less and less my symptoms are there. So feeling THIS bad right now I know is temporary.....and ultimately for my good.

I took this video at some point a bit ago when my arm was particularly shaky but I still had to feed my little ones. Just to show you an example of the "shakes" :)

weak

2011-07-07T02:54:00.001-05:00

This is a BAD week. Shaky, weary, weak.

I think I took this video last week which was my "off" week of meds. But even without meds I still am so wiped out at the end of the day. On antibiotic weeks imagine it even worse. For me, taking care of the girls during the day (without the means to hire help) AND being so ill just makes me need to collapse as soon as my husband comes home from work. He blesses me so much with his willingness to "take over" and cook every night.

happy

2011-07-06T03:49:00.000-05:00

My little brother is here. It makes my heart happy. My daughters adore him. He didn't even know he was coming until a few days ago when he found a great deal on a flight. (See what I mean about God always taking care of us when we need it most?) But something that makes me so genuinely happy about his being here is not the giggles I hear from my oldest, or the bashful, verging-on-having-a-1.year.old-crush smiles my youngest gives him. It's not the beautiful music he fills our house with (he's great on the guitar and the piano!). It's not even his thoughtfulness at making the kids' lunch without me asking.

It's that my husband is so blessed to have him here. Lyme affects all members of the family. The youngest are young enough that they'll probably forget most of how ill I was at this time in their lives, but for Matt, it's acute and painful. He helplessly watches me be in pain, feeling crummy, watching me tremor and seize sometimes. He cares for our family - working a job that pays for our life, then coming home and being Mr. Mom, and being a "nurse"....all in one day. He's stretched thin and he's been needing some encouragement just as I have.

When he heard that my brother was coming his face lit up. It made my heart smile. They stayed up late watching a soccer game last night, and they are planning a half-day outing to a world famous waterpark that we live fairly close to, and lots of Wii will be played.

It's not that I don't count his trip here an encouragement to me also - I mean, he is such a blessing to be around. He's wise and godly; he's also the funniest guy I know with well-placed wit and an infectious laugh. Just the other night we weren't going to be able to see fireworks where we lived on the 4th of July so he set up his laptop and found a website where you can "click" to make fireworks appear on the screen. He dubbed traditional "fireworks" music to it and everything.

So anyway -- I'm so happy he's here and glad he can encourage all of us, but most of all, I'm so happy my husband gets a little boost of morale in the midst of this dark disease.

hit

2011-07-05T06:37:00.001-05:00

The first hit was yesterday. Today is equally as destructive because it's the same dose as yesterday. Yikes! I took these videos yesterday (I've actually been keeping a sort of "video diary" of a lot that has happened with my Lyme disease and when appropriate I'll post them (yes, there are some with ugly crying....those might take a LONG time to surface on here :) ).

Before the meds:

After the meds:

When I'm particularly hit hard, my right side of the face will droop a little. Mostly in the eye area. But I can feel it all along my face. When I can detox a bit it gets better but it's amazing how Lyme has affected so many parts of my body!

Here's a pic where you can see it better - droopy right (my right) eye:

ready

2011-07-04T09:05:00.000-05:00

*big breath*

Tougher protocol begins today....

.....I think I'm ready to take it on.

bummed

2011-06-28T11:09:00.000-05:00

My sis wiping noses and keeping the kids entertained

My sister was here for a week. She was here to be a friend and encouragement but also to take care of the little ones 24/7. It was so nice! It was 1 of 2 "off" weeks and I was actually still struggling from all the toxicity in my body from the last round of antibiotics. So I was fairly useless. B12 shots helped me be able to go on a couple of date nights with my husband (as those have been few and far between). But mostly I was on my permanently worn in spot on the couch enjoying the sounds of my girls playing with their Auntie. It was mostly an energy problem this week and not so much a headache/yuck/pain week.

Then today, the day she leaves (starting of week 2 of the "off" weeks), I am feeling a lot more energy. So yes, it is a blessing that right as she leaves I have more energy but also, a huge bummer that I can't spend this week that I will feel better "playing" with my sis.

But I have certainly noticed that when we have family and friends come to "help", it's often been the most appropriate week(s) to NEED help. And these trips are planned WAY in advance not knowing whether I'll feel well that week or not! God always orchestrates it to my benefit. I'm so thankful.

As of now, we expect no more "live-in" help between now and November!!! That seems daunting to me, especially as I start a very intense protocol on Monday. *shudder*. I am anticipating feeling like "death" and am starting to shake a bit at the prospect of willingly doing that to my body. But I KNOW it's for the good of my body. It's just hard to do it.

We do still have our church body of friends and I know some will be able to help here and there (it is summer after all so I'm not expecting people to bend over backwards when they have plans), but I know this next round of meds will require live-in help.

So Matt and I are just praying. We don't exactly know what we need but we're praying that (as always), God will make our paths straight and give us just what we need. Sometimes it means an unexpected call from a friend or family member out of state who says, "Can I come help for a week or two?" And sometimes it means a week or two (or month) of struggling SO hard that you feel as though you're hanging by a thread. But after, you feel closer to God as He's deemed you "fit" enough for that kind of trial. Sometimes I wonder that maybe I must be extra "fit" to be given what seems like pummel after pummel of trials with this disease. I don't feel spiritually fit. I'm not down and out as God would not leave me lying there. He always helps me up and I have hope......hope like a bright beam through this dark tunnel....hope in Him that makes these daily trials not so despairing.

in awe

2011-06-18T06:50:00.000-05:00

It's pretty ridiculous if you think about it -- that the CDC wouldn't believe in a chronic illness that so many have and that is incredibly easy to get because it isn't treated the right way. I mean, so many people are exposed to it through hiking and even just living in proximity to ticks that carry these diseases. If you don't believe me, take this story -- it'll blow your mind.

Melody was diagnosed with Lyme nearly 3 years ago and had been suffering from symptoms since she was 16!! She contracted Lyme in 2001 after hiking in the same area that I contracted Lyme in. Only I got it way back in 1989 or so!!!

And her husband - my husband's brother - found out he had Lyme disease 3 months after his wife, Melody was diagnosed with Lyme. So you think, "Well, maybe he got it from her" (yes, it can be transmitted sexually). But their doctors think (based on when his symptoms began) that he got it completely separate from her in 2005 (they weren't married until 2007)!

My dear, sweet brother-in-law and sister-in-law suffering from the same disease that I have. They sort of paved the way for me, going ahead with tests, treatment, etc. before I did. And they've been a huge encouragement and ear to bend when I need it.

But that's the thing that astonishes me the most. That we, who are all related NOW (not by blood), but didn't know each other THEN, all have the same chronic illness that people deny exists AND that people say you CAN'T contract in California (where all of us grew up and where we all got it in varying years). Sheesh!!!

I really blows my mind. But in God's plan for us all to have Lyme I've seen the good that has come from it. Like having close family who really truly understands what you mean when you say you feel terrible today because they've felt the exact terribleness you're talking about. And having them to pray for you who can pray a little better because they understand how and what to pray for without even asking you. So while it blows my mind, in God's mind there are details worked out that we don't even know yet and I can trust and appreciate the good things that have come from this so far.

Melody with my oldest daughter when we visited
at Christmas last year.

Spencer with my youngest daughter at Christmas

Flagyl-ed

2011-06-16T18:31:00.000-05:00

So it came to me one night that it might help some of my friends and family know just how sick I am (not that they don't believe me, but it's hard to understand just HOW sick) if I took some video snapshots from the beginning of my day to the end. But as Lyme would have it, it ended up only being 4 short videos in the span of 10 minutes; I was just too beat to do any more or any earlier.

On a Flagyl days (which means the big guns are brought out...only 2 days a week and this drug is a "cyst-buster") I feel terrible and you can generally tell by looking at me.

yuck'd

2011-06-13T19:36:00.000-05:00

Second week in a row of "paint medicine" (Mepron). This is the LAST week hopefully. At least for a while. And after this week I get a 2 week break. *sigh* Then after that I start my new antibiotic protocol.

I currently feel so yucky and nauseous and generally do while I'm on Mepron and Doxy. Yuck yuck yuck.

But today was my oldest's 4th birthday. And I decided this morning I would try to just push through the fatigue and "play" with her. Which for me consists of her bringing me toys and we play as I sit there. First we played where you pick a rose and it's a "sleeping" rose that makes you fall asleep and the other person has to "save" you by playing a magic harp. We played about 20 rounds of that. Then we played with her stuffed kangaroos. There's a mommy and a baby. She wanted us to pretend they did "mommy and baby things" together.

Then she wanted me to read to her so I did...2 whole chapters out of a chapter book. And then to finish it off, we watched Cinderella together. All of those things are way out of the ordinary for me because I just don't feel well enough to most days. I'm grateful that God gave me the bit of energy early in the day to do all that with my girl. She was so happy and it was fun to please her on her special day.

But, by mid day I was crippled again like most days and thankfully my husband came home early to tend to the kids and tonight as we celebrated Georgie's birthday with food and cake and presents, I struggled through, but was just so happy to watch her delighted face that we were all sitting together at the table for dinner and to celebrate :)

Thankful for my little girl!

worn

2011-06-08T10:30:00.000-05:00

Just got back from Washington D.C. I've been recovering from traveling and also just thrust back into antibiotic treatment so my body is not treating me well. But for so many of you wondering, here is how the appointment went:

I was real nervous going into the appointment so I got a little shaky but it was fine. I keep a detailed account of how I feel each day then condense it before each appt and send it ahead (a Word document) to be put in my chart for the doctor/P.A. So when our P.A came in (we love her sooooooo much), she spent a long time going over every detail with us. She loves that we do this detailed account. I mean, when you're going 2 months between appointments it's nice to have symptoms and such written down to remember and also for the doctor to see a trend in your health to help determine what is helping/hindering you getting better. I get praised by nurses and staff and doctors for doing this. It helps especially when you have Lyme-brain to have something to look at that refers to the last few weeks so you can help describe symptoms and such.

She spent from 2:15pm-4pm with us! We didn't feel rushed at all and we were able to ask all the questions we needed to. And she addressed all our concerns. It's nice to have a doctor's office that really cares and doesn't focus on how many patients they can get through each day.

Basically the P.A said that it definitely looks like my immune system is sort of "catching on" that it needs to work to fight and that is a really good thing. And as far as the last rounds of treatment that were targeting Babesia, she thinks based on my symptoms while on the meds, that it really did work on that "bug" and that since only just the last two weeks I have started having normal "off" weeks (off the medicine) she wants me to do just one more two-week round of the same meds (all done "paint medicine" after this!).

After that, since my immune system is showing more improvement, she's going to intensify the protocol. So instead of taking meds M-W-F, I'll be taking some new ones M-F for two weeks. Then two weeks off. I'll do a few of those then consult on the phone with her to see how it's going and then go from there.

She did physical tests on me like she did last time. My right side was bad at the resistance tests this time. My right side is the shaky side. We're going to try to get my legs strengthened a bit in the meantime with some exercises I can do while sitting and laying back since I don't have much energy to do anything else!

I've been having some "stress" herxing where it feels like I'm having a heart attack (pressure, dull pain in my chest and tingling in my arm). I had already called a nurse about this when it first started and was told to up some medicine that I'm on and that did seem to help a lot but my doctor said the real way to avoid this is to avoid stress all together! Easier said than done obviously :)

She gave me a prescription for pain medicine. So far I've been able to deal with the pain but on the last rounds of treatment I started to really suffer. So when I'm in that excruciating down-to-my-bones pain, I can try it. I think it will make me loopy but I'm glad to have it for when I really need it. It's a non-narcotic pain med thankfully and she said it works more to sort of target that nerve related pain.

I also asked if I could stop taking the b12 lozenges because I thought they weren't working AT ALL. And I asked for a prescription for b12 SHOTS. She said, 'of COURSE!'. She said for some people the shots work better than the lozenges and she said I could get a shot right then and the nurse would show me how to do it myself in the future. I get to do it twice a week. It's a special preservative free shot so it comes from a compounding pharmacy. I did notice a difference after the shot (a few hours later). It helped my energy greatly and low-energy/fatigue is what has bothered me the most as a mom. So we're hoping the regular shots will at least give me a day or two of more energy.

So Matt asked at the end of the appointment if she could tell me in her best estimate where I was in the course of treatment (beg-end). She said she would be very honest so what she said wouldn't be her being optimistic or playing it safe because Matt told her that I get discouraged ALL the time about how I'm doing. She said if my treatment were a big mountain peak (which she also said isn't the best analogy because there are LOTS of ups and downs as you go up the mountain AND down), but if it were a mountain peak, then she thinks I'm just slightly under the peak -- almost ready to reach the peak and go down. She said I'm pretty much following the model of where they like to see their patients. I'm not doing better than most, but I'm not doing worst than most. I'm average. Looks kind of like this:

It was encouraging to hear but also not because reaching the peak and going down is almost harder than going up the mountain because as your immune system is better able to handle stuff, they intensify even more your regimen so my body will be fighting a lot harder. So scary! Treatment weeks will be harder, but the hope is that as time goes on, those will get easier AND my off weeks will show more strength in body. But it was neat to definitely feel like progress has been made. Even I can see that.

So after we got everything answered and stuff, she went out to prepare prescriptions and go over her notes with Dr. J. Then he came in (as he always does) and briefly talked to us about my treatment and was glad that things were going "according to plan" (as much as it can with Lyme! It's so different for everyone!).

So you can be praying for the next round of new treatment (in about 4 weeks). It will probably be SO hard. If anyone wants to come help and play with the girls, you should! :)

Keep praying for us. It still going to be real hard....and by no means am I "better". But we are seeing progress so it is encouraging!

Sight-seeing at Mt. Vernon (I was in the wheelchair most of the time but did stand up to take pics!!)

ready

2011-06-01T22:48:00.000-05:00

I have an appointment with my LLMD on Friday. I have to get on a plane to go to his office. But it is so worth it to have the kind of trust we do in my doctor.

I've been feeling better the last week or so and run into a few speed bumps this week but we're hoping overall that improvement will be seen and we can move on to whatever the next "step" is in the process to recovery.

Please pray for a great appointment, safe travels (and EASY travels on my stressed body), and also a little bit of an enjoyable trip for my husband and I as we will be celebrating our anniversary while we are away :)

encouraged

2011-05-26T15:04:00.000-05:00

My little girl randomly came up to me today and said, "I want to pray to God right now...." and she indicated she wanted me to help. I said, "You know how -- just talk to Him."

So she turned around, bowed her little head and clasped her hands together and started,

"Dear God, please help mommy feel better......" then she looked up at me with one eye open and asked, "Wait, Mom? Are you still sick?"

Oh how that encouraged me! I have been feeling slightly better this week -- on my feet more, joking around more with the kids, showing them a cheery face most of the time, and doing more around the house. We've even taken a short walk each day. I loved hearing her ask that for the first time since I got really sick. I told her that I am STILL sick but that I'm feeling a little better! So she should thank God for that. And she did. Then she went on to pray that she was thankful for our "beautiful house", that God would help the "people of Japan and Issouri", and "that Olivia will start walking. Amen". To which I replied, "Um, Georgie -- Liv is running. Don't need to pray for that one anymore." :)

I'm off meds this week and next and I've been trying to pace myself since at the end of next, we'll have an appointment with the LLMD. I just hope this upswing helps and that the doctor's visit goes well and that I stay encouraged.

So thankful for my sweet daughter and her compassionate heart!

stripped?

2011-05-24T11:40:00.000-05:00

It is awfully nice when someone says you look "great" because they know you are sick and they think that since you look "great" it means you must feel a lot better. It's fun to see their enthusiasm that you're getting better even though they don't know you don't feel like you've made progress. Most times I just enjoy that instead of getting all uppity about it and how I should say I don't FEEL great, but thank you. I just nod and say thanks. Because, really, isn't it nice to be told you look great?

I believe it's makeup. And a pretty dress for church. You strip all that away and, well...you don't look all that "great" anymore.

Makeup covers a lot of flaws (as does a good lens on a camera)-

Foundation, eye makeup, blush, lip gloss----

But then take away the eye makeup and lip gloss and you start looking the part of a sicky again...slightly...

But take away the foundation and you get to see the hives that have been plaguing me this week and the acne that has sprouted up because of the stress on my body, and then the pop of pink you were wearing in the dress is gone making you look paler, and then when you take the smile off because it takes energy, well - you start to look not as "great".

I have shown up to church that way before and I can tell you, no one said I looked "great". Instead I got hugs and sympathy and prayers. Because I DID look ill.

I'm not having a pity party at all and these picture don't do justice to my skin flaws, but you get the idea. Just because a chronically ill person looks great, doesn't mean she feels great. But I think we'd all agree, it doesn't mean we don't want you to tell us we're looking good. I think we just also want to know that you know it's a long road and showing up one day looking good doesn't mean we're healed.

My husband will always think I'm beautiful -- hives and all. He never complains, but he does tell me I look "really good today" when I put on a dress and some makeup. I like that. Even if I don't feel good. I know when he says it, he's not saying, "You're better!" He's seen all the ins and outs of the disease and what I go through daily. He's saying what every partner in life should say every now and then -- "You're pretty to me! And you've still got it goin' on!" :)

headachey

2011-05-17T19:23:00.000-05:00

This "paint medicine" as my daughter calls it (it's actually called Mepron), gives me the worst headache when I'm on it. So being that this is my second week of I don't know HOW many cycles of the meds, I'm headache-y. It comes on about 2:30pm and just gets worse and worse until bed. Quite sad.

My little girl came up to me this afternoon as I lay on the couch trying to avoid noises and moving and such and she said in her sweet little voice, "Do you want me to scratch your back?" To her, this is the UTMOST comfort. Sweet little one. To be fair, after she gave me a "scratch back", she asked me to give her one :) And I obliged.

Lately I've just tried to do MORE for the kids. As much as I can without making myself pay for it the next day. This means little things. Like "looking" when she says, "Look, Mom!" and does something silly or something to "show off". Or taking the time as I pass my little tyke to give her brief tickles so she smiles and fake giggles. She's still Daddy's little girl, but she still enjoys when I give her 1-year-old silliness.

This picture has been on my mind lately. When I saw it recently the caption came to mind - "Before the Fall". This was RIGHT after I had been diagnosed with Lyme. I was fresh off a pregnancy and wasn't feeling as terrible as I had in the past and we actually had some sort of "hope" that maybe we caught "it" (Lyme) at a point where it wouldn't be a huge fall to be treated.

It was summer, and we did so much that summer all in a span of a few weeks. We went camping, trudged through a 14 mile overnight mountain climb, spent time with family, went to a sort of college retreat (where the pic was taken---I was dancing in a skit), and went camping again.

I'd say about a week after this shot was taken I was convulsing in a parking lot somewhere in Utah. Scariest.drive.home.EVER. I could barely move and we had a 2 day drive to get home. Once there, I could barely walk, would fall often, and would convulse often. And my husband still had to work so I was home alone with the kiddos. Those were the days where my 3 year old was told that if "mommy's eyes ever close and don't open, you need to call Daddy." And she was taught how. If she ever saw my eyes close a little to rest she pleaded with me not to close my eyes. Poor thing.

But I do see how far I've come from AFTER the crash. We see improvement. Even though it's been rough and I'm sure will still be rough, I at least feel like I see a tiny glimmer of light coming from the end of the tunnel.

We're blessed to have been given so many good things and so many encouragements along the way. It makes the times when we're so so down survivable because we know that God has our best in mind. We know He's in control.

T-minus 17 days until we fly to DC to see my LLMD. Hoping for good news and some more improvement before then :)

OH and btw - if you haven't heard yet, Netflix is offering Under Our Skin to watch instantly. This is a great documentary about Lyme, the controversy about the disease, and also just what we Lymies and families of Lymies go through. So watch it if you haven't yet!

peaceful ~Mother's Day for the Chronically Ill pt. 2~

2011-05-09T10:59:00.000-05:00

I had the blessing of feeling pretty good this Mother's Day! It was my favorite Mother's Day so far. Last year I had recently had a baby and was in newborn "fog". The two years before that my husband was deployed so it made Mother's Day hard, especially since my little one wasn't at an age to "appreciate" me :) The year before that, I was pregnant and my husband and I debated whether I was a "Mother" yet :)

So anyway, it was a lovely day with the family but there was one thing that really stuck out to me. In church Sunday School, my 3 1/2 year old daughter made a card for me. They were to fill in the blanks (with help) and answer some questions.

My mom's favorite color is........BLUE (this isn't entirely untrue - I like all colors but that morning she had given me bright blue nail polish and I had said I loved the color).

My mom is......10 OUNCES....years old (This brought a smile to my face but incidentally, on the car ride home she said, "Mom? How old are you? I just said '10 ounces' but how old are you?')

My mom's favorite food is......MAC AND CHEESE. (Well, it makes sense because since I've been on the last round of meds, I've been so nauseous that nothing sounds good to eat....EXCEPT mac 'n cheese. So we've had it once a week lately. I can see why she'd say that)

My mom's favorite thing to do is......REST. (WOW. It hurt but made so much sense why she'd say that. I really do rest all day save for the very few and far between days that I can get up and do a bit of housework. I asked her if she told the teacher that I was sick and she said, "No, I just told her you rest.")

My mom loves to........TALK.....with me. (Since I obviously can't do much else)

I love my mom because......SHE LOVES ME. :)

tired. ~Mothers Day for the Chronically Ill~

2011-05-03T11:17:00.000-05:00

My mother will be out of town....so out of town that I won't be able to even talk to her on Mothers day. So my time to well wish her was last week. I had to do it over Skype because she doesn't live near. Problem was, my body was fighting a virus. And when it does that on TOP of having Lyme, bad things happen. I didn't even have energy to talk. I whispered most of the day. Even that took lots of energy. So I resorted to writing what I wanted to say to her over Skype. A sort of virtual Mothers Day card. I felt bad it had to be that way but it turned out to be the best. She loved it. I put on some background "mom" music and showed her a set of 10 or so "cards" that had what I wanted to say written out on them.

Such is the life of the chronically ill. I'm glad my family understands.

all "spoon'd" out

2011-04-26T10:37:00.000-05:00

My Easter sweeties :)

For the next two weeks I do not have to take Lyme-killing-meds. The hope is that my body will rally and I'll feel "good" and better for as long as possible to sort of gauge how well the meds are working.

Problem is, I started this week off with a holiday. A holiday that I simply couldn't just lay around for. I was too excited. On Saturday we gave the girls their Easter baskets and did an easter-egg hunt in our backyard. Even just getting off the couch and standing outside with her and Daddy took some of my "spoons". My body had just come off of a rough 2 weeks of treatment so I really didn't have "spoons" to spare. I was in "spoon" debt.

Then the next day was Easter. We got up early and got ready for church to go celebrate the resurrection of our Savior. Right after church we came home and cooked and cooked to prepare an Easter "feast" (as my little girl calls it). My husband made me rest a lot during this but some recipes just need Mommy's touch. We had a few friends there to help too so that made it easier.

But preparing food, socializing (with great friends no less), etc., always depletes my already depleted supply of spoons. It's so sad that something so fun can make you feel awful the next day. So there I was left on Monday -- pretty sad and feeling awful. But you know what? My husband and I talk about it. He'll always say, "Are you sure you want to do that because it'll just make you feel worse afterward?" And depending on the activity I'll say, "I know the cost, but it's worth it for this!" And that's just what it was this weekend. It was all worth it to feel worse afterward. I didn't mind losing "spoons" for all that.

Today I feel a LOT better but I'm laying low just the same to make sure I can truly recover and not overdo it these next two weeks. It helps so much that my sweet friend from our old church out-of-state came to visit for a couple weeks and she's helping with the kids. It really is giving my body a chance to recover from treatment AND the busy weekend.

I was SO excited for Easter-feast :) While on the yucky meds, I was perpetually NOT hungry. Every night my husband would ask what I would like him to make for dinner and every night my answer was, "Blech. Don't ask me. Just give me food and I'll do my best." I worked HARD to eat something at every meal. It wasn't always very MUCH food, but I did EAT so that was good. I ended up losing 10 lbs. over the course of the last month or so. Not great for someone who was already underweight.....and for someone who gaining weight is a HARD endeavor.

But all that to say, I planned our Easter meal because I knew I would probably have a better appetite and so I picked things that sounded delicious. We had a yummy ham (from Costco that I'm proud to say this year, the brown-sugar basting sauce is gluten free!), rack of lamb, cold spinach salad, potatoes au gratin, fruit salad with a delicious vanilla-citrus sauce, deviled eggs, and Brazilian cheese rolls. All of this was gluten free and we didn't have to work hard to make it so. No substitutions were made for all the of recipes. I think Easter is the only major holiday that that has happened for us! I mean, I suppose you could say that the rolls were substituting but I think since they ARE a real "roll" in Brazil that weren't "meant" to be gluten free, they can be counted as "normal" food. :)

Oh it was so delicious -- all that food. But the sad thing is, I think my stomach has shrunk since being on the latest meds. So I piled my plate only to eat about 1/4-1/2 of it!!! The good thing about big feasts hosted at your house, though, is that you get leftovers ALL week :) And I've definitely been taking full advantage of that.

So anyway, leaving on a "food" note, I'll say - here's hoping and praying that the next two weeks will be easy on my body and encouraging to my soul!

weary

2011-04-22T11:40:00.000-05:00

"There is no attribute more comforting to His children than that of God's Sovereignty. Under the most adverse circumstances, in the most severe trials, they believe that Sovereignty has ordained their afflictions, that Sovereignty overrules them, and that Sovereignty will sanctify them all. There is nothing for which the children ought more earnestly to contend than the doctrine of their Master over all creation - the Kingship of God over all the works of His own hands - the Throne of God and His right to sit upon that Throne.

On the other hand, there is no doctrine more hated by worldings, no truth of which they have made such a football, as the great, stupendous, but yet most certain doctrine of the Sovereignty of the infinite Jehovah. Men will allow God to be everywhere except on His throne. They will allow Him to be in His workshop to fashion worlds and make stars. They will allow Him to be in His almonry to dispense His alms and bestow His bounties........but when God ascends His throne, His creatures then gnash their teeth. And we proclaim an ENTHRONED God, and His right to do as He wills with His own, to dispose of His creatures as HE thinks well, without consulting them in the matter; then it is that we are hissed and execrated, and then it is that men turn a deaf ear to us, for God on His throne is not the God they love. But it is God upon the throne that we love to preach. It is God upon His throne whom we trust."

-Charles Spurgeon

*sigh* My husband and I remind ourselves OFTEN of His Sovereignty and that He ordained our lives to be THIS way. This disease is oh-so-tiring in the practice of belief in His sovereignty and faithfulness and goodness. I'd love to say it comes easy but it doesn't. That's why it IS sanctifying (to purify or free from sin). We have the roots of these doctrines and do feel held down and can repeat them to each other and to God as we cry out to Him, but we teeter every so often (as I expect anyone going through a difficult trial can attest to) as we see how ugly and draining and depressing this illness is not only to me but to our family life.

Every few weeks I think I'm dying. I do. I lay wherever my body is collapsed and actually wonder, "I think this is what dying feels like." And sadly, in that moment I am more excited for heaven to be out of pain and misery than I am to see our Savior. I've pondered that more often lately and have tried to make a conscious effort to refocus my view of God and just how awesome it will be to be there with Him. Even the fact that when I was 4 years old and "accepted Jesus into my heart", I remember doing it out of fear of hell and not so much because of the view I had of myself as a sinner before a Holy, blameless and pure God. Yes, I know, four is an age where that can be a hard concept to grasp so fear of hell can work :) It wasn't until I was older that I grew more in the knowledge of Him by reading the Bible and listening to sermons that dissected and taught the meaning of His Word and realized what a wonderful thing it will be to be in the presence of God in heaven some day because of what He did for my sin.

I heard it somewhere and I forget where so I'm sorry I can't find the source....but anyway -- they say cancer patients and AIDS patients don't want to die...but some do because they just can't stop that from happening. But Lyme patients -- they DO want to die and they can't. In most cases, Lyme disease does NOT kill you. It just makes your physical existence terrible....and that word isn't even the most accurate word I can think of.

I feel that way every few months. I actually think of how much better it would be to be dead (because of my physical misery). Matt is encouraging when I am feeling this way. He offers to do anything that could help my misery. We've found a few tricks that sometimes ease pain and malaise. But they don't always work. It's very frustrating.

And it's not just the physical misery -- it's the misery in all aspects of our lives that the disease touches. I can get so mentally weary and discouraged and so can Matt. Usually when one of us is up, the other is down so we have the other to encourage. But lately, we've both just been so weary and discouraged TOGETHER. Our family and church family has faithfully prayed for us and we've received little encouragements here and there.

"In all His relations with His people God is faithful. He may be safely relied upon. No one ever yet really trusted Him in vain. We find this precious truth expressed almost everywhere in the Scriptures, for His people need to know that faithfulness is an essential part of the Divine character. This is the basis of our confidence in Him. "

"There are seasons in the lives of all when it is not easy, no not even for Christians, to believe that God is faithful. Our faith is sorely tried, our eyes bedimmed with tears, and we can no longer trace the out workings of His love. Our ears are distracted with the noises of the world, harassed by the atheistic whisperings of Satan, and we can no longer hear the sweet accents of His still small voice.......We find it difficult, yea, impossible, for carnal reason to harmonize His frowning providence with His gracious promises. Ah, faltering soul, severely tried fellow pilgrim, seek grace to heed Isa. 50:10, "Who is among you that walk in darkness and hath no light? Let him trust in the name of the Lord, and stay upon his God."

-A.W. Pink (The Attributes of God)

And so we carry on...bedraggled....and always thinking of our example to our little ones and trying to teach them that though life is difficult right now, God IS faithful to us in so many ways, even the ways we don't think of. And that we trust Him because He is sovereign. And even when we don't feel, we still obey because His goodness, faithfulness, and sovereignty is not dependent on our happiness or well-being.

I'm thankful this Good Friday to reflect upon His death on the cross that paid the penalty for my sins and that because of His death and resurrection I can have a personal relationship with Him. And through the reading of the Bible which is His Word, I can learn to trust in the promises He's made in it because they haven't once failed me.

Happy Easter, everyone!

blessed

2011-04-20T10:56:00.000-05:00

Did I ever tell you how we jumped right into a church and prayed that God would provide just the right group of friends who would not scrutinize or question my disease as some people can? And how we prayed that God would provide a group of people who would feel led to HELP us in our time of need. That's not always easy to do with new people so we felt it would be a gift from God if we could find people like that. We were new to the area and had no family or "back-up" anywhere nearby.

God answered our prayers almost as SOON as we got here. We made a thoughtful and prayerful decision about which church to attend. We wanted one that valued the Word of God and taught it faithfully and truthfully. After attending a few, we found a great one.

Our next order of business was to find a "Sunday School" class. This is the kind of thing that you attend AFTER the main worship/preaching service. It's more intimate as it involves a smaller group of people and you study the Word of God even more together. So our first Sunday there, Matt and I just sort of aimlessly walked on the campus of the church (it's not terribly large) because we had the bulletin and it suggested a few Sunday School classes that might have our age group/stage in life in them. We walked past one class and looked inside. We thought maybe we had gone to the wrong room because most of the people were 50+ years! So we left. No one had really noticed us there. Then we kept walking. Past a group of family type people. No one stopped to say hello. That's okay. They were all engrossed in conversation.

We kept walking and thought maybe we would just call it a day and research it more online on the church's website. But then a voice called to us, "Hey! Are you guys new?" We must have looked it with our confused faces and slow walk. The man came up to us and extended his hand and proceeded to make us feel so welcome. He said, "Would you like to join us today in our Sunday school?" Did we have a choice? I'm kidding :) We actually did.

He brought us into the room and there were couples of all different stages of life and just about EVERYONE came up to us before class started and genuinely welcomed us. Then as class started the leader said, "So, we have some new people here. Who met them and who can tell me something about them?" Boy, I liked that. I don't like standing up and introducing myself and talking about us :) All of the sudden the room chimed in here and there. All over the room there were facts about us spilling out. These people really DID care and they WERE listening to us when we met them earlier.

After class, a few couples came and asked if we wanted to go out to lunch. We said no but that we love to be asked. We didn't tell them that it was because I was so fatigued from Lyme. In fact, we hadn't told anyone about Lyme yet. We felt so weird coming into a church NEEDING instead of being able to come in SERVING as we wanted. We didn't really know how to bring it up. I figured one of those Sundays I'd be in a wheelchair anyway so it would have to come up.

Still unsure whether this was THE church God had for us, we decided to try it a few more times. Each time we returned to the Sunday School class and began to really get to know people. They were so welcoming and friendly and godly! Such a blessing.

They do prayer time every week. So after about the third week of us being there we trepidatiously shared our prayer request. Well, Matt wasn't trepidatious. I'm always worried when I share with someone that I have Lyme that they will judge or that they will somehow know so much about the controversy of the disease that they will argue with us. Or even just that they will say, "But you don't LOOK sick." It's a hard disease to convey to people sometimes unless you're wheelchair bound or convulsing in front of them.

I was working myself up inside so I did start tremoring. So Matt decided to talk. He shared with them that now that we had chosen this church to be in and that we felt so blessed to be among these new friends we felt comfortable sharing our request for prayer. Matt told of our struggle with my illness and we went into details of how it affects our every day life. And we asked that they would continually pray that I would have strength to care for the girls each day while Matt is at work and more than anything that God would be glorified though my illness.

Everyone was sympathetic. No one judged. No one questioned. There was immediate prayer for us. And immediate love - a few women right then and there said, "We have care calendars for this type of thing. Let's talk after and set up some days we can help you!"

And since then (February), they have stepped up, bringing meals once or twice a month and coming to play with the girls a few times a month (or more when people's schedules work out), and coming to CLEAN MY HOUSE. Wow. This is the body of Christ at work. Genuine Christ-like love. An amazing example not only for me and my husband but for my young girls.

And those of you with chronic illnesses know that it's not just the sick one that suffers, but also their spouse. This church we are in understands that. They pray every week not only for me but for Matt and that he wouldn't be discouraged and that God would give HIM strength to deal with all the extras that are put upon him since I'm sick -- all the gaps he has to fill.

And then today, a random call from a dear one in our class. He said, "I'm coming over to do whatever you want. I'm bringing a few of my daughters too. We'll all pitch in and help. We can do yard work or laundry or whatever you need. Or if there's anything that Matt needs done that we could help with to free him up, we'll do that."

Wow, was that timely. I told him I definitely could think of a list of things that would be so helpful if they did for Matt. He said they felt BLESSED to be able to help. And I'm so excited to be able to surprise Matt with accomplished work done by a loving friend. I know he will feel overwhelmingly grateful.

This is truly what the body of Christ (the church) looks like! And God has used it to encourage us through these dreary days of illness. Thank you, Lord!

right back down again

2011-04-15T15:43:00.000-05:00

The evil yellow "paint medicine" has got me down again! One more week and then I've got a 2 week medicine vacation! I'm hoping that "off" time goes well and I can feel somewhat normal.

I was thinking again today just how much I use to take for granted how easy it was to do seemingly mundane things in my life. Like showering. This has got to be one of my biggest nemesis. On harder days, a shower completely takes it out of me. So far my record is 3 days between showers just because of how draining it can be. And when I do shower, I certainly do not have the energy to shave my legs. For this I feel terrible.

You know? Your husband already has a sick wife and you would like to be aesthetically pleasing.....or at least as aesthetically pleasing as you can muster. Makeup is hard....too much energy. I save it for when we go out (as few and far between as those times are). Dressing isn't so draining for me so I try to dress fairly normal for Matt and try to AVOID sweatpants if I can, although some days sweatpants are a must. Hair? Well, I will confess I let mine air-dry. And that isn't always pretty. I do what I can with clips and such but that's just about it.

Oh how I long for the day when I can have the energy to get up, smell pretty, shave my legs, put on makeup, do my hair, and care for the kids, and have dinner on the table for my hardworking husband. I know the day will come so I'm looking forward to it!

up for air

2011-04-08T11:25:00.000-05:00

It didn't happen until Wednesday of this week but I'm happy to say after "drowning" for about 4 or so weeks, I am finally up for air. I have no idea why but I'm thankful. I'm grateful that I can have some days of reprieve from awful fatigue and pain until I start up the meds again on Monday.

So I am here. And I am enjoying my family. And hopefully I can post a bit more often. I'm trying to arrange a Q&A that I think most of you will really enjoy reading. So stay tuned.

better....ish

2011-03-30T08:42:00.000-06:00

Well, I now only have the remnants of the cold/flu that my girls gave me. Just a lingering cough that shows up in the morning and at night and the occasional stuffed nose during the day. I'm glad I survived that! Now I'm just surviving Babesia treatment this week and next week I get a little break which I am SO thankful for. Goodness! It seems like each day that I have to take meds gets more and more urpy and I feel so much more in pain and fatigued.

I was in so much pain last round of Babesia treatment that I decided to try acupuncture for the first time. I was very skeptical but my husband and I were willing to try it to see if I could get relief since the pain was just SO unbearable.

In my case, the acupuncture greatly relieved a lot of my pain! So much so that I was mostly pain free for about 5 days. It was awesome! The pain did creep back in (which is what the acupuncturist said would happen) and I will probably try it again in the coming weeks to see if it is a form of pain management that fits our lifestyle.

Yesterday my little one turned 1 year old! A year ago I was in the hospital holding my new little girl and just thinking how thankful I was that God would bless us with her and I wasn't feeling terribly "off" or "sick". That didn't come til a few months later when we finally decided that the return of a lot of my symptoms indicated we should pursue Lyme disease as a diagnosis once again.

I've got to say, this little girl, along with her sister, have made my job as mom-while-being-ill fairly easy and for that I'm so grateful. God knew I needed kids like this for this time period in my life. Not that they've been peaches and cream but they certainly have made it easy for me to try to heal in the hectic household of a 3.5 year old and 1 year old.

I know she won't remember her 1st birthday but we still tried to make it a big celebration (just our family). I want her to look back at pictures and think, "I'm so grateful my mom cared to get the party together when she didn't feel good." And also I don't want her to look back at pictures of our oldest daughter's first birthday and think we didn't care enough to make her's special :)

So grateful for this little girl (and thankful for fairly good pictures even though I wasn't feel wonderful!)

like trying whatever it takes

2011-03-23T16:13:00.000-06:00

Even if it means putting a clove of garlic in your ear like a hearing aid.

It seemed to help, by the way. Although I didn't sleep with it. I just wore it all day. Thankfully my daughter didn't notice or else I would have been barraged by questions that I was just too worn out to answer.

Praying I'll get over this cold/flu or whatever it is soon. But very thankful my children are on the mend!

for reals sick

2011-03-20T16:34:00.000-06:00

Oh goodness!

The last few weeks have been so painful for my body. I caught a one day break this week where I was in no pain. Delightful! And I'm grateful for that day for whatever reason it was given to me.

And after caring for two sick little kiddos and wiping runny noses by day and calming coughs in the middle of the night, those little stinkers gifted me their virus. Thought I was coming down with it earlier in the week but I wasn't. I got it today. Ick.

I don't think I've been sick with an actual virus since I started Lyme treatment. So this is a first. I'm feeling pretty bad today but more so dreading tomorrow when I start my next two weeks of Babesia treatment. I know how it makes my body feel and now I get to have that on top of having a runny nose/congested head/cough/aches and pains.

It was such a struggle over the last 3 weeks to stay cheerful and look for the ways I could be taught during the trial instead of just selfishly looking at my pitiful state and wallowing in it. And not only wallowing in it but taking it out on my husband (mostly) and kids (not as often). It's hard to be "nice" when you're in extreme pain. But I am learning and trying (with the Holy Spirit's help) to be kinder, gentler, and more Christlike in my behavior toward my little family that God has gifted to me.

I really have noticed a difference when I speak with kind words (even when I so want to lash out {with my words} or be frustrated in anger at kids' disobedience and mischievousness or misunderstandings with my husband).

"A gentle answer turns away wrath, but a harsh word stirs up anger." Prov. 15:1

My daughter is more teachable in moments when I use kind, calm words than when I react according to the pain I'm feeling. I know it's not easy for her to have a momma that has to lay around most of the day and I know it's not what my husband thought our married life down the road would be like when we first got married. But they have given me encouragement and love. And I'm not saying they're perfect at that. I don't get constant encouragement and love but I do get it. Like today, after a rough morning, my husband brought in some "weed" flowers (because he says that anything growing in our lawn is a weed...even these pretty flowers) and put them in a bowl of water to let them float. It was a cheery gesture and when I came downstairs from my nap/rest/cave of a bed of tissues, I saw that. Earlier in the week Georgie proudly came in from a time of playing outside all stained with yellow pollen and handed me a handful of the same pink flowers. She's a compassionate soul and always wants to give me hugs and kisses when I feel sick.

So as I approach the dreaded weeks ahead I really am looking to learn and see what things the Holy Spirit will teach me through my pain and suffering, and not only learn but practice the things that we as sinners are able to overcome because we have accepted Christ into our lives. I know I would not be able to "survive" this hideous ordeal (disease) without Christ as my hope. Putting your hope in things other than Him makes the fight so much harder and so much more futile.

2011-03-17T13:09:00.000-06:00

Again, this is a no words kind of day. I'm just plain pooped out. Both kiddos are sick and require a lot more attention that I just don't have to give but I have to force it which causes my body to stress physically. Anywho --

This video answered some questions about Lyme in a great way: