Tuesday, September 23, 2014

Along For The Ride

After spinal tap - August 2013
Bruising on my lower back from the
 lumbar puncture August 2013. 
Ever been put on a ride at an amusement park that you weren't ready for?  This past year has felt like that for our family, and we weren't exactly buckled in when it started. We began with a steady incline of little things that didn't seem too big, but then reality started to set in as we got closer to the top, and we knew we were in for some twists and turns.   Last August, after 11 years, I was finally diagnosed with M.S.  The diagnosis and disease have really caused me minimal issues.  However the battery of tests that allowed the diagnosis to be made are still haunting me.  Thirteen months after the last and most painful test I am still recovering.  A spinal tap, or lumbar puncture, was performed in August 2013.  I must have a very difficult spine to work with because they hit bone several times.  Then I went home and got the dreaded headache - a result of my spinal fluid leaking. I had to return to the ER for a "blood patch" where they re-enter your spine and plug up the hole.  Again, they hit bone.  The bruises you see were literally bone deep, and I'm still in pain after all these month.  Scar tissue has built up and I am still working on breaking it up and getting full mobility.  My days are fine, but this really does rob me of sleep - but what mother isn't always tired?  

His Alopecia at its worst. 
As I was dealing with my pain and lack of sleep, we began noticing issues with Mak, little clicks heading up to the top of the ride.  Swollen or hard lymph nodes on his scalp, finding him sleeping all over the place, sick almost every other week and bald spots popping up.  His Alopecia, which had basically been in remission for years, was rearing its head again. We started with the pediatrician with the typical tests, and EVERYTHING came back normal, but hey, let's try some antibiotics... 
February 2014 

After Surgery
Then in February he fell while snowboarding and broke his collar bone.  Surgery and five screws later, we endured that healing process.  

Even in the midst of that his other symptoms kept nagging at us.  There was nothing glaring, just a lot of little things, like each click of the roller coaster heading to that first drop.  

One of the many visits for injections
 July 2014
The most obvious thing was the Alopecia, and we knew we needed to address it.  After seeing a local dermatologist she recommended we head downtown to Cleveland Clinic's main campus.  It was there that new bloodwork was drawn, and the first results sent us heading toward the real ride.  Low Ferritin levels - the storehouse of your iron.  We thought we had an explanation to the fatigue but wanted to get to the cause.  This is when all the twists and turns come, and you hang on tight.  In between our monthly dermatologist appointments we  saw a hematologist, rheumatologist, and an endocrinologist. All of them gave us the same blank stares.   So we decided to see a Nutritionist who took a look at the grand scheme and did a full history, plus a battery of test.  His conclusion was that Mak's adrenals were failing due to a parasite.  He's been put on a bunch of supplements and we are working on building up his immune system. 

As a mom, I want my kids to be healthy, so I've been on my own side journey of research.  I've put more knowledge into my head than I will ever be able to regurgitate but the main thing I have come a way with is that what we eat has a huge impact on our health.  
The nutritionist recommended a gluten and dairy free diet.  Right before we had visited him I had waded my way through a book on the science behind autoimmune and diet.  It also recommended no gluten or dairy, but went farther to eliminate a large list of foods for a three month period.  Mak was so desperate to get better he was willing to try anything.  So, we stepped off one ride and got on another.  
Jack's Eczema August 31, 2014 

Three in our family show signs of autoimmune. Mak with his Alopecia, myself with M.S and Jack with Eczema (not commonly understood as autoimmune). 
And here we are three weeks into a major change in the way we eat.  
After three weeks on a new diet -
no topical treatment at all
For Mak the results are slight, his thinking is clearer and his energy is slowly returning.  For me the results are more obscure - my skin has never been this soft.  No more constant chapped lips and cracking feet.  But for Jack the results are more visible.  He's had an outbreak on his leg since the summer of 2010, in three weeks the improvement is visible, it's not gone, but it's not nearly as large or red (the spots on the right are gone).  We are thankful for the visible on Jack to be encouraged that there is internal healing going on in us as well.  

It's a ride I would rather not have gotten on, but that was not my choice.  My choice though is to count it all joy when I fall into various trials, knowing that the testing of my faith produces patience.  I want to let patience have its perfect work so I may be perfect and complete, lacking nothing.  

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My fun kids

My fun kids
In their favorite tree