I’m relatively new to the site, but not the disease. In spite of being a physician, it took 6 years or so for me to get a definitive diagnosis. Part of the problem is no psoriasis, just arthritis. Anyway, I’m somewhat controlled by virtue of my many medications. Because of the PsA and several other medical problems affecting my right hand and arm, I’ve been on disability for over a year. Talk about losing things, like your identity, career, etc! I feel very isolated, and am still struggling to adjust to this new reality. A huge part of the isolation and sadness is that all my activities take place with people who are about 25 years older than me. Arthritis aquatics is fantastic for me physically, but there’s nobody my age. And the monthly chronic pain support group I go to is a little better (there are a couple of people closer to me in age), but depressing! To add to the upset, my husband has been having an affair for several years, and is now out of the house, and I’m planning to divorce him. My two teenage kids are great, but they’re teenagers! Anyway, I could really use some positive input.
I'm sorry to hear what PsA has done to you and the negative impact it has had on your life. It is always sad to hear that younger people are so vulnerable to this disease--those of us who are struggling with aches and pains and the disabilities that go with them in our late 50s and above can't imagine trying to cope with a career--losing a career--a young family-the struggles of relationships--and the hustle and bustle of everyday life that hopefully slows down as one gets older.
What I thought was a very rare disease is seeming more and more common as I see all the newbies on this site.
I guess I'm not a person you can identify with because there's probably about a 20-year age gap, but you'll meet countless younger people here who you can relate to better. The people here, young and older, have made a big difference in my life. Its good to know you're not alone in your suffering.
I hope there are better days ahead for you.
I am "lucky" enough to know a few people in real life with PsA and rheumatoid arthritis who are close to my age. I have looked into some of the groups similar to what you mentioned, but have found nothing in my area that would work for me.
I'm sorry for all of the additional stress that you have in your life. That makes it a lot rougher. Personally, I am hoping that my two kids make it into their teenage years. Right now my almost 8yr old may not even make it to his 8th birthday in a few weeks at the rate that he's going.
It sounds like you are in the gap still. You didn't mention how you are treating your disease, but when this is under better control your outlook may shift. In the meantime, a lot of people are either seeing a therapist and/or using antidepressants. It can make a big difference. It's a big change, and mourning the change is a normal part of life.
I was diagnosed 7 years ago. I stay active, as much as possible. The disease has progressed, but it is slowed down by the use of appropriate meds.
I see that you are in the greater NY area. I am too, just on the other side of NYC.
Dear Downbutnotout,
It’s been a while since I’ve said this: PsA is a vandal and a thief. It wrecks your body and it will steal your life if you let it. I’m so sorry that you have so very much on your plate right now. If you were feeling better, you might be able to cope better. It’s such a vicious circle of feeling poorly, which makes doing constructive things difficult, which makes you feel worse. Myself, I went without a diagnosis for almost twenty years. I had pain, but the worst part was that I suffered horribly from depression which eluded treatment. I retired from teaching before I was ready. Been there, and I have a lot of physical and mental damage from having been there, but fortunately, I’m feeling well right now. But like many people here, I, too, carry the physical, mental and financial scars of undiagnosed disease.
One of the things that we do pretty well here is listen and share. Lean on us. We do get it, when everyone around you is probably telling you about their Granny’s arthritis, and how turnip juice (or whatever) cured them overnight. Yup. So feel free to vent, to PM, to tell your story, to bounce things off us. That is one of the things we are here for.
How is your rheumatologist? Is s/he supportive? What’s the plan now that you’ve failed several of the treatments? Are you going to move on to something else? Fortunately, there are new treatments coming out every year, and just because you’ve failed a couple doesn’t mean that you will necessarily fail the next one.
Take good care and again, welcome here.