Diagnosed last Aug and having a prolonged flare-up since first of Feb, I've tried to stay upbeat. On Enbrel, MTX, Pred, Folic Acid, and two pain meds. Nothing is working. Pain is 4 to a 6 most days. Among the joints that are swollen and in pain are my thumbs and several other fingers. I telecommute and computer work is essential.
So...having a really bad day. What I want to do is plan. Plan for "how bad will it get" and "When will I feel better." For example, I have speech-to-text software but need software to navigated btwn 5 or more software programs at once. It's $500. Work will pay but if the meds are going to work soon, why ask them? They've already moved me from traveling 2 wks a month...I am sad but will adjust.
I'm also looking at canes but need one with a palm handle. Fingers...
Any books, resources on disabilities or long-term prognosis with PSA? What do I expect? Do people actually get better?? Do I buy a scooter? Do I get a handicapped parking pass? If this is as good as it gets, I will smile and adjust. I am a positive person but really want a better sense of what to expect. Any long-term PSA folks out there today???
Do what is best for you now. I didn’t hold out on mobility aids, because I needed them to function. I have a cane with a palm handle, and I went and got a handicapped parking permit. I don’t use either one all the time, but when I need them, I am so glad to have them.
I don’t really think that anyone knows what to expect. We are all different, on different drugs, and the long term of these drugs hasn’t been studied enough. I also think that most docs haven’t really got a clue either. This is just my opinion. I have decided to plan my life as if this IS as good as it will get. I am also planning for the worst case, which for me is complete disability. I spent a lot of time trying to be optimistic and kept getting smacked down. So, I changed my approach and feel much more even about it all. My approach is to do as much as I can to be normal in my present condition. I am saving money, just in case the rainy day comes, and I am planning second and third ways to work in case I never get better than this.
I’m not an old PsA-er yet, but I have felt almost exactly what you wrote, so I thought I’d reply. Just because you plan for it doesn’t mean that it will happen. It makes me feel better to have my safely nets in place.
You sound like me. I use Dragon Software; I can only work on the computer 5 hours a day; pain is 4-8. I use iced gel packs to get the swelling down. I just had a cortisone shot on Fri evening and it helped alot. I go swim walking in the pool and do the elementary backstroke to offset the computer crawl.
I have a handicapped parking slot, I have the guys take the grocery bags out to the car.
Mine has been escalating slowly over the past year, and I do not have hope that mine will go into remission or get better. I purchased LT Care Insurance for the Assisted Living portion of it, because I figure that I'll be in there in about 10 years. I have made alot of adjustments.
Thanks! This is my approach. People keep saying they are impressed I can stay upbeat. I think of the quote from Shawshank Redemption: "Get busy living or get busy dying." Like you, i want whatever I need to get by right now and we are making those long-term plans for the what-if. I guess I was just surprised that so many folks have found Enbrel or other biologics to help and it's like I'm not on anything. I take 6 meds and am worse than ever. My follow-up with rheumy is April 15 but I'll call tomorrow to be put on cancellation list. It's not a guarantee but I will try and see.
Thanks, Toriop, for your response as well. Dragon Dictate is very helpful. My challenge is navigating the many software programs I have to use for work. I am investigating options but will share if I find anything
Ditto what everyone else said. Get what you need right now. Many of us have a drawer full of various braces, mobility aids (walkers, canes, etc), a box full of various medications, etc. Sometimes they get used, sometimes they don't. I've had this for 31 years and I've had so many ups and downs. At my best I've been in remission, needing nothing. At my worst, I needed my husband to carry me up the stairs and push me in a wheelchair on vacations. The key is to avoid permanent joint damage if you can with aggressive medication. That way, when the disease improves for whatever reason, you CAN get up and do more again, until the next hit.
So, get the software, get the cane, and DEFINITELLY get the disabled parking pass. (my pass is the #1 thing I got for PsA... I put it off way too long, thinking I wasn't disabled enough).
Good question. I've learned to answer that with several variables. Pain- 6 (meaning I can't ignore it, gasp/moan unexpectedly and often and would prefer to star in space and will soon when work is done). Alertness - 2 (pretty alert and thinking positive). Swelling/weakness/stiffness - 6 (real problems with daily activities). Fatigue - 2 (not particularly sleepy).
We'll see if waking at 3 am throws me off long-term.
How are you, Frances? Would you say you were in a flare-up or remission or?
I have had PSA for 23 years ever since I was 10 years old. The best advice I can give is take every day as it comes. Get a rheumatologist that you like, someone who will give you options about treatment. A handicap parking sticker would be a good idea especially if the joints in your legs are affected. There are days that you will feel good and there are days that the pain will be pretty bad. That's just the nature of the disease. If possible a family or friend support system is helpful. However try to be patient if they don't really understand what you feel.