Consider It Pure Joy…

It’s not all fun and games dealing with chronic pain. It can also be quite expensive. After years of pain, I was finally diagnosed with ankylosing spondylitis a few months ago.

At first, I was prescribed Humira. I had one injection that showed promise. Two weeks later I sprayed the shot all over the room because I forgot how to operate the injection pen. Brilliant, right?

Due to insurance problems I was switched to Enbrel. My rheumatologist is a schemer that likes to stick it to the man. Enbrel and Humira have discount cards where you can pay as little as five bucks a month for your medication. The credit from the discount cards applies to your insurance deductible. I thought everything was going to be rainbows and unicorns until I learned that I still have to pay 40% for my medication until I have paid $5000 out of pocket. I know, it’s a terrible plan. Especially since we have private insurance and pay close to $700 a month for family coverage.

I’m switching back to Humira later this month because it seemed to work. Enbrel does nothing for me. After the discount card is applied, I’m going to start paying $426 a month for my medicine. It’s money we don’t have so we are going to eat more beans and rice. It will be money well spent if it relieves me of this pain, though.

I’m sure I’m not being very clear regarding this insurance debacle, but I really don’t have a clear understanding to begin with. Apparently, there is the deductible and there is a separate copay for medications. In a nutshell, it’s a lot of money with little return. Thank you Obama. This Affordable Care Act seems to make health care very expensive for families that work. In my case, my wife works 50-60 hours a week. I’m unable to work, so I’m essentially a housewife who does the cooking. The cleaning…not so much.

I’ve been shuffling like an old man the past few weeks. I try not to whine too much about my ailments, but I’m irritated when friends who have little to complain about start crying about not having a spouse. I could be wrong but I think women are a little turned off by desperation. Advertising your desperation on Facebook is a double turn off. At least he has the potential of finding a mate. I’m sure there is at least one woman in 1000 who are attracted to sensitive men who cry into their bosom every night. I can soak my wife’s bosom with my tears all I want, but I’m still going to be shackled with chronic pain.

I’m comforted by the fact that the Bible never says God promises happiness. With Him, you can be joyful which transcends all circumstances. James 1 teaches that trials of all kinds develop perseverance.

Besides, there’s something much more important than anything I endure. I was going to quote Romans 8:18, but I realized I already did that here.

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9 thoughts on “Consider It Pure Joy…”

  1. I was wondering how you were feeling…. I’m into my second month of Avara and Celebrex and doing better with arthritis and fatigue, but still have other issues that may be a secondary autoimmune disease. Where there is one, there is often more… On the good side of being bounced back and forth between my neurologist and rheumatologist, is my neurologist recommended a new rheumatologist so I don’t have to see the old one. Now, I get to see the head of the dept at a major hospital in New Orleans… In September… but it will be worth the wait to have someone who will listen to you and hopefully properly diagnose and treat me.

    I’m glad Humira works for you; akylosing spondylitis and psoriatic arthritis are closely related. I understand.

    My daughter says I cook only for my food blog these days, so I started feeling better and made an effort to cook easy dinners, which ended up exhausting me and sending me to bed early by the end of the week. But, she was happy for a few days.
    A clean house? One day… 🙂

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    1. I bet you’ll get some answers by the department head in New Orleans. I haven’t been, but I’ve been out of state to see hot shot doctors for an unrelated matter, and oftentimes they seem to have the answers where the local docs are stumped.

      I love cooking, but am easily discouraged by the pain. If I have a commitment like a catering gig or am volunteering with Mercy Chefs, it’s just time to bite the bullet. I can lay in bed for a week when it’s done.

      It’s just a slow process. I hope the Humira does well and it wasn’t a fluke that I just felt pretty good and I coincidentally had a shot of Humira, but time will tell.

      I’m glad to hear you are feeling a little better. I think it’s just going to be a long road (at least for me), but at least some answers are being uncovered.

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      1. Hmmm I would think that they would give you an nsaid, such as celebrex, on top of the whatever treatment for the disease. The nsaid is what allows daily life to continue while the serious medicine can work its magic. After two weeks on the celebrex/arava combo, I could wear my wedding ring that I hadn’t been able to wear in well over 6 years. I didn’t even have any pain or noticeable pain or swelling in my left hand, and only started having arthritis symptoms in the last 3 years. 6 years ago, I ran my second half marathon. It just goes to show how insidious these inflammatory arthritis diseases are, and long they can be present before we even realize they are they or that we even had them. Shoot, I didn’t even know I had psoriasis. 🙂

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        1. The NSAIDs are a no go for me as they gave me an ulcer once before. Tylenol sure does nothing, so I don’t bother with that unless I have a headache.

          That’s awesome on the half marathon. I tried to pick up running when I felt well last year but it just made my ankles angry. I do need to start walking again, though.

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          1. I’ve had ulcers too, but that was a few years ago. Ibuprofen 800 helped for about 2 hours. Feldene (piraxicam) worked well for 9 months, and celebrex so far has been the magic ticket. It’s worth getting the ulcer treated and fixed to trial an nsaid. Some people also take the nsaid with an ulcer medicine (it’s actually prescribed that way). I even have a friend whose taking a new formulation of ibuprofen that had the ulcer medicine in the same pill as a protective measure. My point is, I encourage you to ask for options. There are many nsaids beyond ibuprofen for the rheumatologist to choose from, with the Cox inhibitors (celebrex and feldene) being the best for our types of inflammatory arthritis’s. I still get flares, but that’s because I cut back on celebrex. So, then I go back to taking it twice a day as directed, and voilà, the whole body settles nothing’s (including acid reflux, go figure).

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          2. I’ll have to look into it, then. I’ve been on Protonix for years now to avoid getting another one. I had one probably the size of a fist. I lost half my blood, had it cauterized, spent 4 days in the hospital, had two bags of blood infused, then finally took a couple of weeks to recover my hemoglobin levels.

            My family has a history of ulcers, so I have to be really careful.

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          3. Oh lord. That’s pretty serious. I had a friend who had one like that- that’s a bleeding ulcer, not a regular ulcer like the rest of us!! It’s still worth asking about, but I guess they would have prescribed it automatically otherwise. Life is never ordinary, is it?

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          4. Life is always filled with surprises. My dad had bleeding ulcers probably 4-5 times in his life. Some were triggered by NSAIDs. I’m going to play it safe because they aren’t fun. The worst thing of the whole thing was the taste. I’ll leave it at that.:)

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