It's been a very long time

Wow everyone, it’s been a very long time since I posted on this forum. Maybe years. Im sure this is a common story. When the going gets good, the posts stop coming. Things were very good for about 2 years. I was officially in remission, no medications, living a healthy life, active… now things are sliding back. Too many night have been spent awake, in pain, not knowing what to do. I am tired of the doctor’s appointments, the medications, the constant back and forth.

I have found that eating a healthier based diet has greatly helped, taking fruit and veggie capsules plus extra antioxidants and omegas. I was doing light elliptical workouts and going to pilates once a week, but then my foot started hurting. The ball of my foot attached to my big toe. Relentless pain. For 6 months it got worse and worse. My rheumy ordered xrays and sent me to a podiatrist. Inflammation, I had to wear a boot for weeks and weeks, no exercise, no movement, and the pain everywhere else came back due to my odd way of walking but also my body gearing up for an epic flare that lasted months.
I am happy to say that the inflammation in my foot is gone but only just moved to my toe and knee. It’s like a game of hot potato!

By anyway, how is everyone? I need to go back and read everyone’s posts to catch up. I hope everyone has a great Thanksgiving if you celebrate it.

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I’d been wondering how you were, I remember that you were in remission. Those 2 years must have been a great respite … it must be really hard to face up to the same old thing after being free of it for so long.

What a weird disease this is. Having been so well, for so long, does that bode well for future improvement? What does your rheumy think?

I’m pretty good PsA wise. Most of the time it’s not at the forefront of my mind at all and life is good. I can, however, imagine things changing tomorrow with more pain & nights like you describe simply because it is such a stupid, weird disease.

It’s so good to see you back, it’s such a shame you felt the need to come back. Have you re-started meds? Sounds like you have.

Happy Thanksgiving! And here’s hoping things settle down and then get a whole lot better again.

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Hello Sybil, I’m so glad to read your response. I am happy to be back, but also sad. it’s hard when no one can truly understand what we go through. It is hard to be back in this spot. Some days I wonder if I really have PsA, since I don’t have the characteristic swelling, maybe something is just “WRONG” with me? I think it’s my mind trying to second guess what my heart knows.

My rheumy wants to start back on meds, I am delaying. I am scared and tired all over again, unsure. I need time to wrap my head around this again. I know with my healthier lifestyle I might have a better time with medications this time around but I am just unwilling to try again, right now. I think after the new year I will make an appointment and we can talk. I have been blessed to have a great rheumy who really listens .

Gad to hear PsA isn’t always on your mind and you are doing well. That will always make me smile. The dark times aren’t as often and the sun shines through most of the time. Happy Thanksgiving to you and yours as well!

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Don’t tell anyone but I have the same kind of thoughts too sometimes. PsA does seem to manifest very differently in different people.

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Thanks for telling me that, and my rheumy has said they same thing. Sometimes I wish for evidence. All my xrays are normal, blood work normal, etc. I just want some proof. I think we all crave that though. Something to prove we aren’t making this up.

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Yippeeeeee, great that you’re back. But a bummer that things aren’t so cool on the PsA front. I was thinking of you not long ago when the Houston floods came up in a conversation. But I couldn’t remember your screen name. So glad to have you back.

I get what you’re saying about wanting proof. Twenty years of being undiagnosed had me doubting everything that was apparently wrong with me. When I got the proof in the form of test results, x-rays, the opinion of someone I knew was a PsA expert, it made all the difference to me. I knew I wasn’t making it up (ie being a malingering, whingeing whining neurotic wuss).

Big hugs to you, don’t be a stranger for so long.

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Seenie!!! Hello!! I’ve missed you.
Yes things on the PsA front isn’t the best but it’s just the next chapter. Haha.
I think we all want proof but I need to trust my instincts instead of wanting to ignore what is really happening.
I shouldn’t have stayed away so long. My business is all about supporting people’s health and encouraging them to choose healthier lifestyles. All the while I wasn’t supporting myself when it comes to PsA. Trust me, I won’t be away this time.

All my love!

Ps we were fine in both Houston floods. We moved to a new house that is flood safe. Plus I am able to garden more. Lots of birds too. Very happy!

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