Tuesday, September 03, 2013

long.time.coming- our journey through sickness and into health: part one

I've been in the process of transferring much of the blog entries i wrote during my pregnancy and first years with jennifer into a handwritten journal. Its something i started two years ago and have not been very good at completing it. I finally am to the point of transferring the section after her birth. I honestly feel as though by being so far behind in it, i am missing things i would love to share with regarding her 2nd and 3rd years, but it has been very therapeutic for me to have just now rewritten the sections from labor and her birth. i needed to dive deep into those thoughts again now as i am just beginning to feel movements of our second little one and want to learn from and remember jennifers birth now so clearly so i can be better prepared for this little one.

This brought me to realize i haven't made any entries in a year and a half. this time-span may well be called the most difficult year and a half we've seen, thus my lack of updates.  Even the months before that when i did post, it was almost entirely chronicling the life of our daughter, and ignoring the difficult-to-talk-bout health issues of my beloved. Though we have grown so much...we have certainly hurt much....i haven't wanted to write about it...because i haven't wanted to face it in print, or maybe even admit it...in the midst of it. now that i've been rereading and rewriting the experiences just prior to it, i am reminded of the huge benefit of having my experiences written down, and of the great opportunity I have been avoiding to give God more praise for His faithfulness and stability in our journey....and i hope that i have not waited too long to engage my memory in recording what i've been through.....bear with me as I attempt to recount these skipped-over parts of our family.

The year after Michael and I were married, we both discovered running. I got into it with some friends of mine, and he followed me into and turned out to be a lot better at committing to it. He would get up and run in the mornings before going to work, and sometimes would ride his bike to work instead of driving. About a year into becoming so active, Michael began to have more and more really irritating symptoms and we didnt know what they might be symptoms of. He began to have difficulty completing a run without needing to find a place to use the restroom. We'd heard that sometimes runners have issues with that, so at first it was just embarrassing, but sometimes he didn't make it to a restroom in time... About January 2009, 6 months before we moved to fort worth, through some trial and error, and reading about symptoms, we self-diagnosed Michael with Celiac disease, and because all his symptoms fit (frequent diarrhea, skin dryness and red itchy patches, vitamin and iron deficiency, mood swings, etc...) AND it is an illness which is only treated by a diet change, we changed his diet to test our theory. we removed gluten from his -and mostly from my- diet, we waited. because of the way celiac works, we knew it could take 1 to 2 years to see remission, so immediate results were not expected, nor seen. However, he did seem to be experiencing fewer symptoms, so we thought we were on the correct path.

....Then came our move to Texas. With that, the stress of job hunting, financial worry, expecting our first child, school, discovering Michael's dad had brain cancer... Everything you ever read says that stress aggravates digestive issues, so it did not much surprise me that as school became more challenging, so did keeping up with Michael's nutrition (and laundry...) He was working, or in classes most of the time and coming home to change clothes whenever he'd have an episode. (that's what i'll call it, its nicer that way..see why i avoided writing about this previously?)

This lead us to need to move back from Texas much sooner than we had planned, and as  we know now, stayed in this same situation for much longer than we had imagined... refer to  This entry for more context on our move...and if you add in the part about Michael's failing health, it makes a bit more sense. i hate that i wasn't willing to face and admit this gaping need in our lives for support. it was so very difficult to talk about, so only those closest to us knew the whole story. i just wish i had written it out more honestly....for me...and for anyone who may now be able to benefit from our past struggles.

So....after we'd moved to North Augusta, into my grandmother's house, I quickly called to begin the process of getting Jennifer on SC medicaid...and turns out our entire family got it, which was something I just wasn't looking for. This  began Michael and myself getting routine Dr exams...which neither of us had afforded in...decades. Michael began to talk with his physician about his assumed celiac, and at the same time we decided to go to Haiti with a mission team from our church...thus needed lots of shots and antibiotics for the trip. the many doctor trips for mission trip shots kind of overshadowed his need for further testing, plus his primary care Doc moved so he was shifted around a bit from doctor to doctor in the practice. also, add to that, once he began complaining of symptoms worsening after the mission trip, he kept being treated as though he had picked something up in Haiti, rather than as though he has been struggling with diarrhea, anemia, and lack of bowel control for months and years prior. We knew this wasn't a parasite or reaction to something out of the country. Finally, ended up being assigned the same Doctor i've been seeing the whole time, whom I had been very pleased with, and she heard his whole story and immediately understood his issues needed looking into. from April 2011 to November 2011 as he was shuffled from doctor to doctor, he also ended up losing his job due to being late or having to clock out early...completely due to his digestive issues. In November 2011 he finally was given testing to see if something else were wrong with his digestive system. we were immediately told that he had inflammatory bowel disease which meant he had ulcerative colitis or Crohns, While we didnt know till january 2012 which he had, and both take somewhat opposite diet changes to live with and treat, it was knowing something, and knowing that we had help getting to the root of it. knowing that there ARE treatments available...etc. having a tested diagnosis and medical team working with us was such a relief. Anytime someone is vying for you, on your team, and helping to find a solution, it helps carry the weight.

Due to holiday schedules, it was January before we got the diagnosis...and found out he had ulcerative colitis. it meant that almost everything he ate caused his colon to become and stay inflamed. it is an auto-immune disease, so his system was attacking his colon. Theoretically, if you can find out your triggers, once the colon calms down, you may just have a few foods to avoid to keep from getting sick. I had wondered why being gluten free had helped him feel a little better....turns out...the best help to UC during a flair up, is going to a low fiber diet. prior to going gluten free, we had been eating whole grain everything, so in switching to gluten free foods, we had dropped a significant portion or our grain fiber, and were mainly getting fruit and veggie fiber. still more than was recommended for someone with a severely inflamed colon, but significantly less than previous...thus the noted improvement.

So....recap:
January 2009 assumed celiac, went gluten free
November 2010 declining health issues and stress, moved back to north augusta, in with grandma.
April 2011 through November 2011 dealt with not getting tested and not getting listened to.
January 2012 found out what was the issue. time to celebrate...right?

well....Spring, summer, and fall 2012 were a doozy....i'll get into that part in a later entry....i promise.

(proceed to part two)

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