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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • PattyJ
    2 years ago

    Since you are qualified for Medicare on disability, you are probably also qualified for Medicaid and probably also for home help. Try contacting your state office for Health and Human Services and see about applying. I have a spenddown, but the home help I get that is paid through the insurance is applied to it and almost completely covers it. The home help in Illinois is through the Department on Aging. I don’t know where you live, but there are probably programs in your area, both local and state that will help you get the medications, additional insurance and other help you need If you have no idea where to start, contact your state representative to ask where to go for help.

    I found that I rest best on a heated waterbed. I always hurt more if I stay anywhere else. I roll over the side to get up. Sometimes it is very difficult to manage but the lack of pressure on my hips and shoulders is totally worth it. I have a waveless mattress.

    Try to find things that you can still enjoy doing. Surround yourself in colors you find soothing or happy. Learn ways to cope with depression and do what you can. I just got a puppy. She is a lot of work right now and keeps me occupied, but her happy little wiggle tail and coaxing me to play are worth it. She likes to play fetch and have barking contests. I can manage that. Installation of a doggie door is in the near future.

  • Eurotrekker author
    2 years ago

    Thanks Patty,
    I have tried many of the things you suggested. I do not qualify for Medicaid or home help. They say I make too much money. Evidently, since I was responsible and paid for long term disability while working, that little bit of money I receive monthly has knocked me out of any assistance. I don’t really want to be on assistance, but am digging it incredibly hard to make ends meet.
    As for the fur baby, I adopted a rescue cat, who was about 2 years old. Now she is 5. Her name is Mila. She’s a sweetheart. I have also started making stuffed animals to take to people in nursing homes, are homebound, or are in hospitals. I had never made animals (nor really sewed for that matter) before. I make my own patterns and so by hand, when my fingers are mobile enough. So, far I have made and delivered about 45. I have another 26 ready to go to a Memory Care center for Alzheimer patients, and probably about 15 put back for future deliveries. I also volunteer for NAMI (National Alliance on Mental Illness). I’m in my church choir and women’s Bible study group. I also write cards for a church group, for those who are ill, have lost a loved one, got married, had a baby, or have had a baptism.
    I try to stay busy, as much as possible, but everything has to be flexible. I never know when I’ll have an​ flare up.
    Thank you for your info.

  • Casey moderator
    2 years ago

    Hi again, PattyJ!

    Thank you again for sharing your helpful and awesome advice! However, when I was reading your comment, I noticed the part about your puppy and had to respond! That makes me so happy to hear that you have a new furry friend. I have a dog myself who provides so much comfort and support. I had no idea how much of a benefit our furry companions could be! It seems like you’re experiencing this feeling as well! She sounds so wonderful, just like you! I found a few articles on having pets with PsA, and how they can affect our health. You can find these here, https://psoriatic-arthritis.com/living/can-pets-improve-health/ https://psoriatic-arthritis.com/living/role-of-pets-healing-and-coping/ and https://psoriatic-arthritis.com/living/furry-physicians/

    Please continue to share with us, we’re truly grateful to have you here!

    Sending gentle hugs,

    Casey, Psoriatic-Arthritis.com Team

  • CathyD moderator
    2 years ago

    Eurotrekker, thank you so much for taking the time to share your story with us. Everything you have been through, and continue to go through, sounds incredibly tough.

    With regards to the financial issues, we have a couple of articles that discuss paying for medication. I think you may have tried most of the suggestions but just in case there is something here that will help:

    https://psoriatic-arthritis.com/living/paying-for-cost-of-psa-care/
    https://psoriatic-arthritis.com/answers/paying-for-meds-without-insurance/

    We are here for you and so glad that you are here. Please stop by anytime you need support.

    – CathyD

  • Eurotrekker author
    2 years ago

    Cathy, Thanks for the info. I’ve tried many of those. In fact, it was Johnson and Johnson that told me if I had no insurance or if I had Medicaid, it would be practically free. I’ve tried so many websites, made dozens of calls, and have drs looking fur reasonably priced drugs. I have not tried the experimental drugs yet

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