I suffer from Sjogren's secondary to Rheumatoid Arthritis. The Sjogren's and the Rheumatoid are both sero negative. Well they were in 2006. My Rheumatoid has since become positive unless controlled. I have neuropathy from the Sjogren's. I also moderate a Sjogren's forum at www.sjogrensworld.org

I think it is imperative to keep moving. I have recently experienced multiple stress fractures in my sacrum, ankle, back and pelvic area. I have used crutches since this began and was able to use my walker then stop using the walker and was able to walk until the pelvis fractured. But I am still using crutches and have not gone to the wheelchair because I think it is so important to keep as many muscles as strong as possible. I will start physical therapy as soon as the doctors think the breaks are healed enough. I think it's important to keep going and to do as much as you can, but to pace yourself.

When I am able to have the physical therapy and get going again, I'll start the water therapy at the local YMCA.

Billye

Hi Bilye:

I think you are one of the bravest people I know. I'm sending you warm holiday wishes and hope you never go into that wheelchair.

Enjoy the water therapy.

Take care, Melody

Wow! So Much to answer.

Well I agree about PT and exercise. I've been in the VA PT Wellness gym program for 4.5 years. I go twice weekly and use several weight machines, but have noted the steady decline weights I can handle. I've also got a routine of stretching/motion exercises. Today I can seldom complete all my gym routines anymore. Still I work at it. Four years starting in about 2001 I was a therapy pool volunteer. I led 3 water arobic groups 5 morning a week and as time passed the number of days and the number of groups I had the strength to do decreased until it came to a point that I couldn't complete 1 set and couldn't get out of the pool on the ramp without help. I knew better than to continue with the pool program when I was a danger to myself and my fellow patients.

I don't drive, as I fear causing an accident as a result of my slow reaction time or not being able to feel the break peddle or simply falling a sleep while driving.

My Rheumatologist feel there is at least one more CTD condition not yet identified and I suspect it's systemic Lupus.

I have neurogenic badder and expect I have neurogenic bowels as well. Simply put, the wiring to my brain for feeling and muscle control have been cut. As far as my GI tract goes, I don't ever feel bloating, constipation or any movement within. When I sit down to pee without a catheter I most concentrate on relaxing my catheter muscles and let gravity take over. It is at this point I have BM of some kind or not. I hope to see a GI doc soon.

With all the things happening, I feel as though I have a PACMAN running around in me just eating up nerve fibers.

That's all for today. Thanks so much for caring.

Jamie Marie

Sounds you have really been doing all you could to preserve your health. That is extremely important. Even if your ailments are progressing, I hope you can find comfort that you have been doing your part to avoid deconditioning.

Some of my worst times were early on in my illness when I felt totally helpless. Now, even though I am getting worse depsite my best efforts, it's the fact that I am making the effort to stay well that helps me cope. Because I can focus on the aquacise, healthy diet and lifestyle, I can let go of most of the frustrations of chronic disease and leave them to a higher power.

I must mention that I think you are wise to make the decision not to drive. It is a big blow to independence to do so, but you are being considerate of your own and others' safety. I do not allow myself to drive more than 45 minutes continuously because I cannot safely remain alert for long periods of time.

I hope what I said above made sense. I wish I had more help to give you. Please continue to be the best you that you can be.

fanfaire

Hi. I have been dealing with this for almost a year. Anyhow for the first 4 months I was in bed full days from the pain. When I started to push myself I could barely walk through a small store. Now I have worked up to being able to walk 20 minutes but walk through big stores like Target. I often feel like my legs will give out and limp.My docs said it just feels that way but won't. Since they have been wrong about most things with me I am not pushing it to see. I was extremly active before this happened. I have a very hard time now knowing the balance of pushing but not doing too much. I fear damage still but I do see how important it is to not let your muscles waster away. My pt experiences have been really bad and the guidence by my docs are very vague. I think for me loosing my ability to be active and do has been mentally hard. Right now I guess I could care less about being a sporty person I just want to be able to do daily stuff not in pain. I hate having to push to do small things. Oh by the way I am young not to say it is different but at 29 I should be more active. Good luck in finding te right balance for you.

Jamie Marie, you are such a pip! Look at you doing all those water aerobic exercise classes and still working out! What an inspiration. You should be so proud of yourself. I am so sorry your disease is progressing, but at least you know that you did everything possible to prolong your health. I am going to try to be more like you in 2008.

Daniella -- hi! It is good to see you posting. I decided to hold off on the spinal stimulator for now. I am making a huge effort to do everything I can to get healthier: eat healthy food, lose weight, exercise as much as I can, stay active to keep ahead of the depression. I still use my 25 microgram fentanyl patch and take Lyrica and I wish I could get rid of them both, but gosh, I get a LOT of pain relief from them. I hope 2008 is good to you!

Reading everything you written,i'm very impressed,don't ever give up,
well I sure you won't. Please get to a good GI. Dr.,they have helped me
and do hope they do the same for you..

I use my wheelchair when I go through the stores why,I fall down and
I find myself dragging when I use my walker I must put my hands through.
This use to make me sad,but I love going on the trails,or flying down
the street on a snowy day..I can get in bed but no longer lift my legs.
but PT has come up with some wonderful devices to use. We all must
handle it the best we can..Everybody on this forum and so many of
the others are brave,or just doing the very best thy can..

D i'm so happy your back and your getting out, it's been hard for you
but 20 min. is wonderful. I do remember when you couldn't get out
of bed. That's a Wow!!!

To all and thanks to J,C,K for not letting my
brain shut down,that's a challenge and Mel you make us laugh and that heals. Jamie you have come to a wonderful place. now I will take my award
and leave,why I would be here thanking everybody..Fanfare thanks for the
trip to Mayo,like Billlye that was brave...Hugs Sue

Thanks guys. I agree that everyone here is so strong to face this day in and out and what wonderful supports too.

Hi Everyone,
I've been off the board for about a month, and I've just read over this thread with all its replies and comments. It's quite up lifting for me.

Like many of you, I do get "down in the mouth" and feel sorry for myself, but those moments are thankfully brief. I have so much to be grateful for. I look at people walking by and think ~ I used be to be able to do that. While I walk within my home, it to is limited. I use my power chair so I don't over do it and cause myself more trouble. In spite of the routine and extreme pain, I still go to PT Wellness twice weakly. My motivation is simply believing that if I stop my mobility issues would increase more rapidly. See...that's a blessing in it self.

I'm quite pleased I see a sleep doc next week and in the following week I see Gastrology and Neurology doctors. I just hope these doctors will actually listen to me and not be else where when talking with me.

My sweetie and service dog are so loving and supportive. Thank you to each of you for sharing a bit of your stories and bits of wisdom.