thoughtful

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!!!

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

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!

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

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

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

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.

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

.....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

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

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

.....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

(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

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

 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

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

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

....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

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

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

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

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

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

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

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)

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

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)!

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less calm :)

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

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

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

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

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

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

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

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.