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Wherein you will find posts with humor, photos, reviews, occasional rants and journalistic entries of interest to me alone but that I hope will touch you, the reader, in some way. I remain sincerely yours,
A Work in Progress

Tuesday, November 22, 2011

A Whole New World
 I wasn't sure where to begin this post or if I even should.  I wondered whether to give chapter and verse on how and why or when.  I've decided to go with the now, the "what is".

Our kids both have Lyme Disease.  More properly they have Lyme Borreliosis.   And it can be overwhelming sometimes.  There.  I said it and it's right here in black and white.  Our present reality.

If you, like me, once thought Lyme Disease was not a big deal, that you had a tick bite, saw a bulls eye rash and got treated for a few weeks, you were sadly misinformed.  You aren't alone. 
If you are "lucky" enough to have found the tick, gotten the bulls-eye and gotten immediate treatment, this may have been your experience with Lyme.  Thank God for it if it was.
The Infectious Disease Society of American likes to tout the tagline, "Hard to catch, easy to cure".  Pardon me, but as a wise man once said, "horse hockey"!   
If, like our daughter and many folks we know, you were sent to specialist after specialist, had test after test, treated symptom after symptom and over the years things kept getting worse, then you know how Lyme can behave.  It's been called "The Great Imitator".  Biologically, I stand in awe of it.  As a Mom with 2 sick kids, I loathe it.

I research til my eyes feel like they are bleeding.  I highlight and annotate whatever I can find of the latest research and hand over the "Cliff Notes" version for our Dr.'s new file on Lyme.
It can be extraordinarily difficult to wade through it all.  More often than not, I end up where I started, knowing less than when I began and completely frustrated.  In this I am not alone.  
It staggers the imagination all the politics of Lyme, the quackery out there and the snake oil.  Desperate people take desperate measures.  And hubris runs rampant in the field.
There is good science out there, though it is not as easy to find.
I am looking forward to it not the least of which because he is a member of IDSA.

On the advice of a friend whose son had Lyme, Mike and I watched the film, Under Our Skin with horror.  Even if you take it with a huge grain of salt, and we did, it is terrifying.  (It is available on Netflix streaming as well)
I listen to friends whose children have it or had it and their struggles and triumphs.  I am so grateful for them, it is very easy to feel utterly alone in this.  Though I am wary of on-line support groups for the misinformation one can find on them, I have made friendships with other mothers of children with Lyme and their kind words have touched me deeply. (Lymenet is one of the oldest groups out there.)

I pray for our family doctor, for wisdom and discernment and courage to deal with this disease alongside us.  I know she feels a little out her her league with this but we are choosing to stick with her.  She never stopped trying to find out what was wrong with our oldest.  She never dismissed her, never, ever gave up on her.  And she is willing to learn.  We are so grateful for her.  So here we are with a clinical diagnosis of Lyme Disease bolstered by test results for both our girls.

Our oldest is the worst off.   There are over 70 symptoms of Lyme Borreliosis and they are system wide.  Rowan has 30 of them.  We now know, from old tests that she was positive for it 4 years ago so she has had it at least 5 years, maybe longer.  Because they were "negative" by CDC standards they were simply marked as such and we accepted them as such.  ( I'll link info on that but it is WAY too much to go into)  
The little one started to complain of headaches and wrist pain about 6 months ago.  It occurred to me recently that it is exactly how her sister's first presented and so we had her tested.  Her tests came back exactly the same as her sisters.  I was so grateful to know what I was seeing this time around.  Jenna has, at present, 9  symptoms.  

There is some research showing that the Lyme spirochetes flourish with gluten and sugar in the diet so I am trying to eliminate it in theirs.  It isn't easy but gluten free is a lot easier than gluten and sugar free.  I am so grateful for the internet for this stuff, many Mom's posting recipes for their families gluten free needs helps so much.  Pinterest is also a hugely useful tool to keep it all organized for myself.
Add to gluten free and sugar free the need for dairy free 2 hours on either side of the little one's antibiotics and it gets even more tricky to juggle.  
Probiotics are critical to protect them from the harm of the high doses of antibiotics they are taking and they need to be taken 2-3 hours before or after the antibiotics.  
Additionally, they are on different antibiotic regimens so I set alarms on my Google calendar for 6 times a day for Rowan and 4 different times a day for Jenna so they take the right pills at the right time.  I couldn't do without my phone that syncs to the calendar and alerts me 15 minutes before everything.  So many tools at my disposal, I am so very grateful to have.

It isn't easy sometimes, when they can't do school or chores because they feel like crap because they look great.  It is hard to fathom sometimes just how sick they are.  It is one of the "invisible diseases".  They can function normally some days, not so much on others and some days they just spend in pain.  Good days we work our butts off to keep up with school.  Bad days I let them rest when they need to, there is no other option.  I am deeply grateful that we homeschool so that we can work around the bad spells.

We live in a whole new world and there is a steep learning curve.  Still, there is so much to be grateful for and so many blessings.  This Thanksgiving and daily I give thanks for the abundant grace, provision, timing and love of our Lord who gives me strength.

Wishing you all a very Happy Thanksgiving


GAHCindy November 22, 2011 at 9:18 PM  

Happy Thanksgiving to you, too! I can't imagine dealing with all that. I'm not sure I'd be smart enough to figure it all out! Kuddos to you for working so hard--not that you have a choice, I guess, but still, what an amazing job you're doing!

Gillian November 23, 2011 at 2:29 PM  

I am so, so sorry your girls have this. Is there any chance of recovery at this point, or is it something you just have to accept?

Happy Thanksgiving to you as well. You ARE doing an amazing job!

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