Wednesday, August 31, 2011

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"But in the case of low, pulsed dosing, where an antibiotic is administered, withdrawn, then administered again, the first application of antibiotic will eradicate the bulk of biofilm cells, leaving persister cells behind.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.

Monday, August 29, 2011

reflective

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!

Friday, August 26, 2011

great

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. :)

Wednesday, August 24, 2011

loved

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.

Tuesday, August 23, 2011

numbed

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?

Saturday, August 20, 2011

prayed for

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

Friday, August 19, 2011

hairless

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.


Wednesday, August 17, 2011

like I'm still recovering

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!

Monday, August 15, 2011

hurt

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?

Friday, August 12, 2011

awful

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. :)

Wednesday, August 10, 2011

tired

....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.

Monday, August 8, 2011

geared up

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:

Wednesday, August 3, 2011

like I've come to terms

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! :)

Tuesday, August 2, 2011

not prepared

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 :)