all right in the end

Help fight lupus!

I started a petition on Care2 urging President Obama to devote more funding and attention to lupus research and awareness -- please sign it and help forward it in whatever way you can! I know that just about everyone's on Facebook, Twitter, all kinds of sites, so if you can promote the cause to your friends in even one other venue, that's a huge help.

I have no idea if these kinds of things really help, but hey, it's worth a try, right?
red moon

Total knee replacement: Yay or Nay?

Hello, my fine co-sufferers!

Having had RA since '97 and replaced both my hips in April '10 with quite satisfactory results, I am now in the market, so to say, for a knee replacement or (hopefully?) two.
However, it's been my understanding that knee replacements are fussy and difficult things that require considerably more recovery time and strengthening exercise, and also are less stable compared to hip prostheses. That said, it'd be mighty nice to have somewhat more functional knees, and hence, my questions are:

- Those of you who have had total knee replacements of one or more knees, how did you prepare for surgery and how did you exercise throughout the recovery period?
- If you had a job that required you to stand/walk a lot, how long did it take until you were able to go back to work?
- What range of movement can I likely expect? Can I ever sit on my knees again? (I haven't been able to do that for ... 13 years?)
- Do any of you have rheumatoid varus or valgus deformity of the knee that was corrected through so-called constrained condylar knee replacement, and how is your range of movement with this type of prosthesis?
- Any complications during surgery or recovery?

Now for a question that has little to no relation to all of the above: do any of you have experience with leg ulcers of any kind? I developed a chronic venous leg ulcer sometime in September; I've been through two courses of antibiotics for recurring infection and have been wearing compression stockings for the past 6-7 weeks without any visible result. I even dropped both Enbrel and MTX shortly after the ulcer appeared in the hope that my immune system would get going and fix stuff on its own, but sadly this has not happened.
Suggestions towards my further course of action are most welcome.

Thanks in advance! :)
I haz a question

(no subject)

 Hey, how's everyone doing? Hope you're flare-free with the hot weather!

As always I come bearing...questions. For RA, I am currently on Enbrel, methotrexate, plaquenil (hydroxychloroquine), folic acid, and Relafen as needed. I've been doing pretty well for the past 6 months to a year, and I've been on plaquenil for a few years now. 

At my last appointment (about 2 months ago) the doctor said she wanted me to start going off the plaquenil...I guess if I'm doing well, might as well start taking away meds, right? Hopefully get down to the "core" ones. I take Plaquenil twice a day; she originally said I could just stop if cold turkey or just go from one a day to a month to none. 

I've been doing the one a day and I feel like CRAP. Especially this past week. I went grocery shopping and for two days I had to walk pigeon-toed to get around, my fingers feel sluggish, I feel tired...just CRAPPY.

For those of you who have gone off of Plaquenil before...is it something that you're just not supposed to notice a difference with if you stop cold turkey and your RA is doing well? Or is it something like when I had went off prednisone, and your body has to get used to not having it again and may throw a hissy fit?

I know that these are questions for the doctor, but for right now I want to hear other people's stories. I went through a similar feeling when I went off prednisone a year ago and just...ugh. If it's something to EXPECT that's one thing, but if it's something that's telling me to go back ON the plaquenil, I'd rather not be hanging around off-medication when I need it.
zedd

Remicade um...wearing off?

Brief history: I'm 33 with endo, RA and likely Lupus (my Rheumy is still figuring that one out but the RA is certain). I was diagnosed in October of 2010 after many many years and BS. I started on 20 of prednisone and 500 of sulfasalazine twice a day. I worked up to 1500 of sulfasalazine a day plus Humira twice a month, then Humira once a week. That wasn't working well enough so I was taken off sulfasalazine and put on Imuran + Humira, which brings us to a few weeks ago.

So Imuran + Humira wasn't doing it so she took me off Humira and started me on Remicade. My first infusion was on July first and it was like magic. I haven't felt that good in YEARS and now it's started...wearing off. My next infusion is on the 15th and I assume it will provide the same results. For those of you on Remicade: is this normal? (at least in the beginning) That you start to feel all hurty before the next infusion? On Humira I felt like butt for 3 days after the shot, then a couple days of pretty good then two days of going downhill until the next shot. I didn't get the "feeling like butt" part after the Remicade (YAY!) but I'm starting to go back downhill. So yeah, do others feel this way? Kindly tell me this is normal :)

x-posted to autoimmune.
Cats: Cinnamon and me

"Failure"

Last Wednesday, I had an upsetting experience at my chiropractor's. My rheumatologist wanted me to try physical therapy for my left hip and knee and last week was Day 1 of PT with my chiropractor. The PT was going to have 2 parts: work with a balance board and stretches with this chair:



He prefaced the instruction of the chair by saying that "Everyone can use this chair."

Long story short: I couldn't. The reasons aren't important. I woke up the next morning unusually upset and realized that it was because not being able to use the chair that "everyone can use" had made me feel like a failure. Further, I realized that this was at the root of why I always hated PT growing up: that it wasn't the obscene amount of pain, but the sense of failure--that not only could I not do what "normal" others could do effortlessly, but that I couldn't do it even with practice and an obscene amount of pain.

So, I lay in bed ruminating over this sense of failure, and eventually something clicked. There certainly was a failure involved in that PT session and in all my past PT sessions, but that the failure wasn't mine or my body's; instead, that the failure was the expectations of others. My body, when you think about it, is incredible. That it's gone through so much and can still do so much is worthy of praise. My body has an extreme ability to adapt. I find myself doing things in a new way without even thinking about it.

My body is not a failure.

But if you're comparing my body to "normal" bodies without taking into account what my body has had to go through, the failure is not mine. It's yours.

(x-posted like whoa)
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    good good
summer hammock

Bowling for Myositis - a fun fundraiser in CT!

Hello all! I am trying to hold a fundraiser for myositis, a rare autoimmune disease that severely impacts a person's muscle function. We need more participants to help make this a success! So, if you live in the state or know someone who does, please help spread the word...

What: Bowling for Myositis
When: Sunday, June 12, 1:00 - 3:00 p.m.
Where: Laurel Lanes, Plainville, CT
Why: To raise money and awareness for a serious disease that many have never even heard of

The cost is $20 per person, which includes 2 hours' bowling and shoe rental.

There will also be raffles, including a 50/50 and various prizes, including a "Night at the Movies" package with free movie passes, popcorn and drinks for two, tickets to Connecticut Cabaret Theatre and the New Britain Rock Cats, a huge basket full of assorted Penny Press puzzle books, a hand-crafted necklace from Designs by Karen, and a handmade floral arrangement. All profits will go directly to the national Myositis Association.

For more information, please email castlesburning@gmail.com

To learn more about myositis, go to www.myositis.org
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normal

Injection Question

Ok question time...does anyone who injects (Humira in my case) notice a different reaction depending on which side you inject?

I've noticed that last 4 times (so twice in each leg) that when I inject on my right side, within a few hours you can't even tell unless you look for the small puncture very very closely - but when I do it on my left, I get a large red raised area (kinda looks like a big welt) that last for up to 3 days and is warm and tender to the touch.

I'm injecting on the same spot on each side, making sure it's into muscle etc, I always leave it out before injected for the same time. I only noticed this after my last appointment and I don't think it's worth making a special appointment and the Humira people are about due for their nurse person to call for a follow up I'll mention it then - more just curious for myself if anyone else has this?
Star

Humira and methotrexate injections

Hi, I was just wondering for those of you who do combo meds, do you do them on the same day or a few days apart? I havent done this combo before and I havent taken humira yet, but I've taken enbrel and it made me tired and so does methotrexate. Is it best to just get it out of the way over the weekend, or would it be better to split it up? Thanks for the feedback :)
xposted