Active to Disabled

I used to be very active. I studied and taught overseas. I took ground school for aviation. I did cliff diving, spelunking, backpacking across Europe, worked for an airline, and was a teacher. Out of nowhere, part of my lung died. At first they thought I had a tumor, though I’ve never smoked. When they operated, they found no tumor, but part of my lung had died. They had to remove most of it and reattach bronchi. They assumed I had has a pulmonary embolism and put me on blood thinners. However, after months of numerous tests, no clots not anything else was doing to have caused this.
My health continued to decline and I started hurting more and more. It finally got to the point that I would have to have someone help me out of bed, because the pain was so intense. After about four years of testing, I was finally diagnosed with PsA. That was back in 2008.I was put on Enbrel, which did absolutely nothing to help. Then I was put on Remicade, but ended up developing cellulitis after each infusion. It became so bad that they were afraid I’d lose my legs. I went to a would clinic and then to a lymphedema clinic, which helped my legs tremendously. Unfortunately, I have to put pumps on my legs in the morning and wear pressure wraps throughout the day.
Also my spine is literally crumbling. I easily fracture vertebrae and have degenerative disc disease. Plus, my immune system is so compromised that I had zero resistance to whatever my students brought in to me. Staying in constant pain and being sick so often, my doctor said I had to go on disability. I did. Since I had such adverse effects with Remicade, I was put on Stelara injections. They actually eased the pain, though I’m still unable to sleep in a bed (I use a recliner) and an unable to do hardly any activities.
When I had school insurance, after my deductible and with the assistance of Special pharmacy, I could afford my injections. However, now that I’m on Medicare, no one will cover it nor help with a supplemental. I’ve spoken with the pharmaceutical which makes it, various assistance pharmacies, various supplemental insurances, and every other thing I can think of. My PCP, rheumatologist, and immunologist have also tried to find a way for me to get the injections. The last couple of were given as samples. However, I never know when I can get one. In the meantime, I’m told that EACH injection will be $39,000. I am on disability. I don’t make that I’m almost two years.
The physical, emotional, mental, and financial strain is unreal. Besides the pain, I think what bothers me the most is that it feels like I’ve been robbed of my future. I’m only 53 and feel as though I’m 103. Furthermore, people don’t always understand. When they see me, I seem to be doing fairly well. That’s because when I’m having bad days, no one sees me. I’m in my house and not out and about. I don’t sleep well and am constantly tired. Still, when I’m among other people, I put on a big smile and do my best with things. Generally I’m an optimistic person, but there are days that I feel sad.

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