Not Amazing

I am not amazing. I have heard that several times this week. I have heard a few other opinions as well. I have lived with chronic illness for most of my adult life. Very early in my 20’s I learned to accept a new normal. I wake up, and I don’t have the energy everyone else has, I never had that. I had to accept that I would assess the energy I have for the day and use it and be happy. I admit I have not always done that. For years, I played the sick card. I sat on my ass and waited to feel better as if I am entitled to feel good.  I don’t do that anymore, and that is the reason that people think it is so amazing that I try to do the same things they should be doing.  Quite honestly, it pisses me off that people who could achieve physical, education, or other goals sit around and say that I am amazing.

I push through the pain. When I started running a few years ago, I thought I would hate it but I didn’t. I realized that it was another way I could learn to deal with the chronic pain that I experience every single day. Pain changes the way you think and the level of crap that you are willing to accept in relationships. I find myself throwing the bullshit card much more often these days.

I know what works for me. It won’t work for everyone, and I don’t judge others with my same challenges. They need to learn what works for them. As far as others judging my choices, I find it funny that they think they know more than I do about what it is like to live in a broken body.

Currently, I want to complete a half marathon at the end of April. It is very unlikely that will happen considering the last week and my challenges. I have had several medical issues, both new and unexpected and extensions of old ones that are no surprise. My list of ologists continues to grow, and I am ready to step out of the ring and tell them when they come up with a plan to let me know. I have done this in the past. Maybe it is a bit passive/aggressive but I need to know and understand what I am doing.

I am not sure how specific I want to be about some of the health issues that have caused problems this week. I will say that I am really sick of pneumonia this winter.  Getting three invasive GI tests in a five-day span was just STUPID and will NEVER happen again. Not only did I agree to the three tests that required two preps (anyone with IBD can relate), but I continued my usual routine (including running and working).  VERY STUPID. This threw the thyroid out of remission and then I started to have cardiac issues. Now I am convincing cardiologists, endocrinologists, and the other team of ologists that I am ok. If I hear ‘just as a precaution’ one more time I will scream.

I am sure of one thing; I will not sit on my ass and wait to feel better. It never works for me. I need to continue to keep my goals and schedules and plan my day the way I always do, by assessing my energy and pain and setting my goals for the day accordingly.

This week I wanted my long run to be ten miles. It could have been outside because the weather is great. That will not be happening. I ran yesterday, only two miles but it was outside, and I was successful. I will be trying for an outdoor 6.5 mile run tomorrow, and I will be cross-training all week. It is looking like I may not be able to finish the half in April, if that is the case, my new normal will be to accept that I can finish a 5K and pick a new date for the half later in the year.

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!