Update on me (so thrilling! lol)

I haven't posted much about myself for the past few months because there wasn't much to tell.... I was stuck in bed. I didn't want to scare all the newbies! For the newbies: I'm on year 32 since diagnosis. I honestly haven't been in this bad of shape since "The Gap" when I was dx. The fatigue, pain, and worst of all (something I don't usually have): swelling.

My downward slide started around October. Prednisone took care of some of that. Then in November I needed a minor surgery and my blood pressure was dangerously high from the pain, stress, and swelling. Dr said no more prednisone. I changed meds to Stelara after an epic saga attempting to obtain it from the specialty pharmacy. After 2 months I continued to go horribly downhill. My dr. said in the old days he would have sent me to a medical spa in someplace like Hawaii where I could sleep, rest, and be fed for a month. I wish!

The swelling restricted my range of motion on so many joints that moving around AT ALL was almost impossible. My husband had to help me dress and shower and cut up my food into small bites, if I could eat at all from my swollen, painful jaw. I was sleeping 12-13 hours a day (something I've NEVER done before), interrupted by pain.. My kids, age 13 and 16, lived on boring meals they made up themselves, or whatever my husband (who CANNOT cook more than 3 easy things) could make. My husband usually is at work a good 10 hours a day, so being home for dinner and / or taking the kids to their activities several times a week cut drastically into his work time. He also had to take over pet care for my rabbits. Stress: we all had it. About the only thing I *could* do was hold my mouse and type because my hands couldn't close enough to grip anything, even a book. This kept me sane and let me dump on friends and not on my husband / children (they lived it, they didn't need to listen to it too).

I changed to Orencia about a month ago. The first thing my rheumy said to me when he saw me 2 weeks ago was "You look better. I didn't want to say anything but the last few times you were in you looked TERRIBLE". I've been seeing him for 16 years, I'd never heard him say anything like that, so that was quite a statement from him, considering I've not been doing that great the past 2 years. Even the receptionist was excited my next appointment could stretch to 6 weeks instead of 3 weeks!

At any rate, I am now out of bed most of the day about every other day, and half the day the other days. My sleep alternates between a normal 8 hrs, and 12+ hours of sleep. I am able to drive my kids to some of their nearby activities. I can make dinner about twice a week. On a good day when I slept ok and feel pretty well, I can manage one extra outing, such as grocery shopping, or lunch and some book shopping with friends, or clean up the kitchen a bit. The swelling in my joints has gone down about 50%. I still can't close my hands all the way, but 3/4 of the way is progress. I can grip my toothbrush! So things are definitely improving. I still feel a bit like I'm on the outside looking in, with everyone else flying by, but at least I'm able to get re-involved with the things in my life I enjoy, a little bit now. It feels good :)

End note: like I said at the beginning, I don't want any newbies to freak out from my story. After 32 years with PsA this is only the 2nd time things have been this bad for me :))

YAAAAY, Marietta! I’m so glad that things seem to be turning around for you. I love your attitude and your sense of humour, although I’m sure over the past months that was wearing thin as well.

I’m excited for you. Thank goodness that we live in a day and age when we have this kind of help available. I shudder to think of what happened to PsA sufferers only a generation ago. I hope the improvements continue for you!

Marietta I am surprised, I did not sense anything different with you at all during your flare. Please remember you can always count on us when you are down. And I hear you on not wanting to scare Newbies, that goes through my mind sometimes too. Then I remember my 80 yo yoga telling us all, "your yoga extends to the edges of your mat only: don't try to compete with your neighbor. Compete with yourself only." Not a problem for me at yoga. I take my glasses off at yoga and can't even see my feet. God I loved that yoga teacher but I digress.

I think we need to remember that with hearing about the battles, wins and losses of any other PsA warrior. We all are in the battle but each foe and warrior is different. Each of us experiences our own wins and losses. Our battle extends to the edge of our mat.

I have had a bad winter myself. I am starting Stelara. I will let you know how it works for me.

I am so sorry to hear that you have been struggling so much. I understand how hard it can be; I find to especially hard to lean on my husband that much. He is kind and loving, but boy howdy does it make me feel guilty. You made me smile when you said how well you are doing now. I measure my wellness by how many nights I am able to cook dinner! There are a lot of similarities in your story, and I am SO glad that you are beginning to perk up.

No matter how scary you think your story is, I think we can take it. We are here for you as much as we are the new ones. We do really care about you and how you are doing, so if it’s bad, you never need to hide it.

I hope you are really on the mend and get a long, and well deserved break from this.


Thanks everyone :)

Believe me, if I actually felt I could benefit from posting something I would, and I have in the past. Sometimes I feel like a bit of a freak even here.... I think no one else has had severe disease for as long as I have. It's different when it's been DECADES of this stupid roller coaster. It honestly gets boring. Oh, I'm stuck in bed again? Oh, I'm back up again? ad nauseum. Oh look another med to try! Oh, side effects again, how fun.

Yay for Orencia,that’s what is working for me right now. Hope it continues to get better for you!

Glad that you're getting some improvement Marietta. That's a very rough patch. I'm sure that your family is happy to be getting you back as well.

Glad your feeling better, sorry you’ve had to go thought so much, thinking of you. Always remember that letting “newbies” hear your story is all part of the education of having PsA, but its lovely that you didn’t want to scare anyone. I personally used to find that reading about others PsA bad times gave my own situation more perspective. X

Wow Marietta, think I'm going to call you Poker Face from now on!

I'm really pleased it is starting to improve for you though. And whilst newbies can get scared (I was truly terrified at the start), we are all here for you and want to help, so if you think the occasional vent is positive, please don't feel like you shouldn't!

I still remember being a newbie, and to be honest, part of the education was to read stories like yours and realise that my rhuematologist was right - my PsA might truly suck, but on the spectrum of the disease, it really isn't that severe (and to this day, with my well controlled disease, it helps to keep me grounded and prevent the "why me").

And there's always wise old heads on here to remind us that most people do really well most of the time - I still remember Lamb pointing it out to me that the ones with well-controlled disease are out living their lives, not sitting on forums.

And funny, I too measure my progress by meal cooking (particularly if I can be bothered to cook some deliciously fiddly from-scratch Thai curry, which I love to do, but takes a lot of effort).

Hugs, Marietta <3

Wow - that was a rough time you had. As a newbie...yeah, it is scary. But, the unknown is worse. Thanks for sharing and I hope you continue to improve and enjoy the day to day things.

Thats it, Marietta. Keep going and getting better every day.. You are in my thoughts and my heart. A feel good time is on its way for you. (gentle hugs for u) The birds are singing outside now and the sun is peeking at us in between Spring showers. Summer is coming. Hopefully you could get a leg up in the coming months.

Wow, what a stretch you have had. I admire your fortitude and thank goodness you and your doctor found a medication to begin knocking it back.

Well said!!! Just Me:)

I'm starting orencia this week. I was happy to read its working for you!! I was diagnosed a little over a year ago and have already failed on several medications...... prednisone mthx enbrel and Humira. I'm back to horrible pain.....stiffness.... I can hardly walk. I pray it works for me as well!

As a newbie you didn’t scare me just raised a million more questions after isn’t that the way of newbie. Like a child all we do is ask why, why, why! If this site isn’t for people who have or are suffering most and need a place to feel understood even if its only breif (age 10 DX is obviously rare) then I wouldn’t want to be here anyway!
Good to hear your finding relief and hope it lasts! Thank you for sharing truly.

Wow how strong you are! As a newbie, obviously I don’t want to think my disease could be so bad, but I would like to think I could have your strength to deal with it, no matter how bad it gets! So happy to hear you’ve found something to make you feel a little better…

I especially like the little ‘measures’ we now have - a good day used to be measure for me in whether I could squeeze toothpaste onto brush! Now I’m feeling better, it’s how many plates I can lift into cupboards - was zero now it’s 2-3!! Hope you continue to improve …

Yes, Golfnut, Marietta is one of our strongest, most courageous members. And speaking of strength, you know the saying “A woman is like a tea bag – you only find out how strong she is when she’s in hot water.” So true.
Wishing you, Marietta and all of us, strength and grace under pressure.

Thank you for sharing. I have been having what I thought was a bad winter and you just put things into perspective for me.

I know this is a very late reply - YAY !!!!!