Surviving

In the past year, I have lived through two hurricanes (Irene and Sandy), a derecho(freakish weather storm), 3 colonoscopies, 3 upper endoscopies, a capsule endoscopy, a CT enterography, a MRI enterography, at least 20 sets of labs, a sleep study, x-rays of my entire body (arthritis), 4 ER visits and three GI doctors. Add in two rheumatologists, a determatologist, gynecologist, a pulmonologist(sleep study), psychiatrist, neurologist, and I think I have had my fair share of stress this past year.

Writing it out, I sound like an over-user of health care services, or a crazed girl who gets off on doctors visits. I wish. If my body functioned halfway normal I would be happy. I am a medical rarity, having Crohn's, a traumatic brain injury, and a non functioning immune system. My immune deficiency can be possibly tied to the Crohn's, for people with IgA deficiencies are more likely to have autoimmune disorders. 

I never used to worry before my brain injury(at least I don't think so). It's coming upon my 9 year anniversary, and I'm not far away from living more then half my life with the injury. Before then I was a normal kid/teenager. I rarely got sick, and apart from a couple of broken bones, stayed far from doctors. Post-TBI, I feel like the past nine years has been nightmarish. Do I think that my TBI had something to do with my Crohn's? Possibly. I'm not saying that by being hit in the head, my intestines permanently malfunctioned, but that from the stress, and years of medication, that it definitely worsened the situation. Having a family history of the disease, I was genetically predisposed to it. Do my siblings show signs of disease? They both have stomach issues, although not as severe. Just like having an IgA deficiency, is somewhat common, compounded with the Crohns it is definitely more pronounced and worsened in my case. I cannot fight off even basic colds. I get every illness around me and feel like I'm constantly getting over something. 

This post was initially started to comment on the hurricane that just passed my area, leaving much dustruction. Instead it came out to be a post on what has seemed to be a destruction of my body and me. The past 9 years has worn down my body and mind. I'm sick of procedures and test results. I'm sick of sharing my encyclopedia sized medical chart with a new face each week, feeling like I have to prove my authenticy of sickness. I'm sick of feeling sick. I have heard numerous times that there is a difference between surviving and thriving, right now, I am surviving. Just like those five miles from me who has lost their entire lives in the storm, they are currently surviving. It will be months before the towns are thriving, months or even years before people recoup their losses. I feel the same. Eventually I will thrive again, I will be able to enjoy life, and actually live it, just right now I need to survive the next few months and new treatment. Hopefully on Thursday I will known more, until then, I will focus on getting over this cold.