Chronically Thankful

Blogging about the Lord is much more interesting than writing health updates, however some of you have asked so here it goes. There is reason to think that my current autoimmune illnesses are linked to when I broke the C2 vertebrae in my neck (damage to the autonomic nervous system). When it happened I was 15 years old and didn’t think about the implications of the injury as much as I thought of how ugly the neck brace was. I had it in the back of my mind that I was a lucky girl to not be paralyzed but I shoved those thoughts aside. I am a few months away from the anniversary of the accident and it hit me like a truck yesterday how very blessed I am. That break could have caused so much more damage than it did. It could have damaged the central nervous system and I could have never walked again or even died. So thanksgiving is the mind frame in which I write about these current struggles.

Though I was diagnosed with dysautonomia (POTS) at age 11 it did not impact my daily life all that much until freshman year of college. Trauma to the head and spine have proven to make POTS worsen for people like me. Through scoliosis, broken coccyx, concussions, and broken neck it is understandable that my health has been so effected. We have been discovering that my health problems go deeper than just POTS. There are many people, including my sweet cousin Moriah, who have seen my same cardiologist for POTS and have experienced improvements. I have not fainted in going on a month now and that is a big improvement. But the level of my day to day ability to function is still low. There were things that we were attributing to POTS that the POTS treatment is not fixing so we are still on the quest for answers.

My cardiologist mentioned a while back that I am on the threshold of Ehlers Danlos Syndrom (EDS). Through tracking my symptoms, I do not believe he would say that I am only on the threshold anymore. I am not sure I want another label put on me though. I struggle mightily with chronic fatigue and pain. But it’s nothing a smile can’t hide, right? One of the main things that originally got us pursuing doctors was the pain I would experience after meals. I cut out gluten and random foods that I knew would cause a reaction but years later there has not been full success. In fact, I need more prayer than ever right now because I am at the point where my stomach is so sick of food that I am not only experiencing pain but I am often not keeping food down at all. Through lots of research and collaborating with a friend who is on the same struggle bus, I have started a low histamine diet. It was overwhelming at first but I think I am settling in.

Juicing has been my best friend because I have the most success with keeping juices down. “Keeping it down” though often means being nauseous, breaking out in hives, dizziness, and swelling. I know this is not normal and I am definitely not settling for a life of being underweight and puking. I have a chiropractor appointment on Wednesday with a lady who has seen people for the same reasons and who has had success in the treatment. There is also a highly esteemed doctor in Sugarland who specializes in degenerative and autoimmune diseases. It is hard to get in to see him. The praise is that I got an appointment, the prayer is that they will be able to move that appointment up sooner than April 25, 2017 at 2:30.

Life with an invisible illness is easy to hide when people only see you when you’re at your best. In the same day someone will say “you look amazing I’m so glad you’re doing better” and another will say “oh darling you don’t look so good today.” The latter is easier to believe because that’s how I feel beneath the smile and makeup, but the first is what I long to be true. I have many prayers and praises and I often repent for various sarcastic, mental comments. But the most consistent of prayers is that my security will not lie within this body- I have it for only a time. We are wired for life and eating is apart of that process. When my stomach is in jabbing pain but is essentially empty and when I am hungry but throw up after a few bites it is easy to idolize food. I want this momentary hunger and pain to serve as a reminder of the hunger I should have for God’s Word and the fervent way I should seek him. And yes, I do believe this is just momentary and only but a mist of time.

How truly thankful I am that my life did not end up the way it could have and that it didn’t turn out how I had planned. His plan is always better. This journey he has me on has benefitted my heart and has allowed me to empathize with so many. Anything that Satan intends for harm God can and will use for good if only you surrender. I believe there is healing in my future, but I pray that when I get there I will never forget what this time was like and always walk in humility toward Christ. “We ought always to give thanks to God for you, brothers, as is right, because your faith is growing abundantly, and the love of every one of you for one another is increasing. Therefore we ourselves boast about you in the churches of God for your steadfastness and faith in all your persecutions and in the afflictions that you are enduring.” 2 Thessalonians 1:3-4