I Fight

I don’t fight my disease; I fight my insurance company. I see at least four doctors. I see each doctor numerous times per year. I did not anticipate this when I was in my twenties. I thought I would be seeing a doctor once per year any maybe the OB/GYN regularly. I never thought I would be seeing multiple specialists over fifteen times per year.

I get infusions every five weeks. Eleven times per year. Each one is over $5000, and that does not count the visit or any lab work I may need if I am sick.

My medication costs $75000 per year retail in the US. My copayment requirements are over $1000 with my insurance, and I have two medications that are not covered at all. The medications have been declined. I am only able to afford to pay cash for one of the declined medications. I am non-compliant with the immunoglobulin therapy. The insurance company states that it is experimental and when that argument was dispelled; they stated that it was not cleared for my autoimmune disease (any of the three apparently).

Speaking of the insurance company and denials; most of my lab work is declined and the test to confirm one of my autoimmune diseases was declined, the lab work that checks the level of my chemotherapeutic drug levels, and my anesthesiologist for invasive tests have all been declined.

I do not fight a disease; I live with three diseases. I fight my insurance company. I am financially devastated, and my children cannot attend college as I wanted. I will never retire, and I will never own a home of my own. If it were not for the generosity of my family and friends, I would be homeless and not able to be as compliant as I am now. I would be disabled.

Crohnie Daze

Infusion day is boring. People always say that they will come and sit with me and they never do it. I just sit here for two to three hours. I have Crohn’s disease. I have had Crohn’s for over twenty years. I have tried many treatments and have failed most so my disease is considered severe.

I have most of the bad effects of this disease including arthritis and fatigue. It is not just a poop disease.

I also have celiac and thyroid disease. Sometimes I feel like a walking disease. But I’m not. I am a paramedic, a mother, a grandmother, and a runner.

Like I said I have failed most treatments. So I sit here and get IV infusions. This is still considered non invasive. I’ve had surgery and may need more. I say may need because I basically refuse to get the MRE. This is a test that combines the worst of a colonoscopy and the MRI. It is basically a colonoscopy preparation with the enclosed MRI exam. Not so excited to get that one. The test will say if I need another resection because there is only so much medication therapy can do to heal my damaged intestines.

IBD is not the same as IBS. Although both people suffer, IBD (crohns or colitis) causes many more systemic issues. IBS is a reaction in the gut. I am not a disease but I have a disease, three diseases really.

I really wish people meant it when they say they would come and sit with me. I will just hit Facebook and trap someone in a message conversation.  I will post pictures and history soon. Now I sit. HAPPY RUNNING!