The Uncertainties of Life With Psoriatic Arthritis

Last night was a night from hell. In order to tell you about it, I need to give you a little more information. I have psoriatic arthritis (PsA). This is an autoimmune disease which is similar to rheumatoid arthritis but is different in some ways. I have had it for about 12 years now. I don’t think, at this point, there is any joint in my body that has not been affected by this disease. By “affected” I mean: severe pain, swelling and becoming fused or having permanently lost function. So far, I have had both hips replaced (several times), a shoulder replaced and an ankle surgically fused. The other ankle and the other shoulder also need surgery but due to my unhappiness with the status of the ankle and shoulder that had surgery, I have procrastinated with having these two other major surgeries.

At any given time, I have pain in multiple joints and sometimes it feels like every joint in my body is on fire. For a long time, I was on heavy-duty pain medicine with some relief gained, but not nearly enough to make it worth the hassles of dealing with narcotics and the snide remarks of pharmacists about being on such high doses of habit forming drugs, none of which I was ever “addicted to.” There were times when I was temporarily medically dependent on oxycontin and morphine following surgeries, but as soon as was feasible, I weaned myself off those drugs because I do not like the sense of being at the mercy or under the control of a substance. While none of these drugs removed my pain, they brought it down a few notches to the place where I could stand it.

Because I was so unresponsive to the chemo-like drugs (biologics) used to treat PsA, my rheumatologist basically said that I would have to be managed by the pain specialist I was seeing. However, recently, something very frightening happened to me. One evening I took an oxycodone tablet and shortly thereafter I became extremely confused. I could not remember how to operate my laptop… I couldn’t sign on… After working on this problem for one whole night and one whole day, I managed to sign on… I proceeded to send very confused emails to my dad and a few other people… I made up words. Nothing I said made sense. This confusion lasted for four days. I couldn’t remember how to cook or how to even turn my oven on. It was terrifying. That was the last pain pill I took. And maybe it was the last one I will ever take. (I did have several similar events, so I knew it truly was the pills I was reacting to.)

My pain management doctor discharged me from his care. I have been relying on Voltaren pain gel for topical relief. And on nights like last night – when I had severe pain in over six joints – it takes every bit of endurance I have to manage just to get through it. Any activity would have been impossible. All I could do was lay under my blankets wanting to cry, until finally, mercifully, I got a little sleep. However, this morning (1 a.m.), I awoke with a continuation of the pain, so it looks like a day that will mostly be spent in bed. The prospect of future surgeries without pain medication is terrifying to me. Heck, the prospect of today without relief is pretty scary also.

I don’t know what the future holds. I have no financial resources be able to consider assisted living and no family in a position to care for me. I think soon I will have to leave my husband and move into wheelchair accessible housing. The six steps on our deck to enter the houses are getting more challenging for me daily. Soon they will be impossible.

I try to keep a sense of humor but sometimes it just isn’t funny. Because there are so many auxiliary conditions associated with PsA, it looks to people like I am a huge hypochondriac. One minute it’s asthma, the next, glaucoma, then peripheral neuropathy. So, what really is the problem? The real problem is PsA. It is the cause of all those other things. (Except, possibly, the asthma, although there is some evidence that pulmonary disease is caused by PsA also, so the jury is still out.)

It is hard having an invisible illness that no one has ever heard of. Even my doctors when referring to it, call it “RA” – even though they know it is not.  The worst part is when people tell you they have a sports injury and now suffer from arthritis so “I know how you feel.” No, you really have no clue. Maybe take your pain and put it in every single other joint and have it hurting all the time, then you might approach some inkling. As Kelly Young (the “RA Warrior”) says, “It ain’t your grandma’s arthritis!”