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Post by jeffn on Dec 31, 2009 13:05:12 GMT -5
Well another year gone by. Looking back how did we all do? Was 2009 a good, bad, or kind of a level year for your trials with Scleroderma? Any thoughts to share?
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Dec 31, 2009 19:52:46 GMT -5
Determination!
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Post by sherion on Dec 31, 2009 20:17:31 GMT -5
As far as my sclero, 2009 was a pretty level year. Nothing is worse, which I guess is a positive event!!! Although my mouth seems to be getting smaller, my dear hubby said that it's my imagination, I'm still a big mouth!! lolol
Sherion
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Post by steve201 on Dec 31, 2009 20:54:31 GMT -5
mine has been quite stable and not active at all...the only thing that drives me nuts is my right hand is damaged from reynauds......blood work looks great...attitude is good...determination to continue to fight this off is still good....
and my willing to help others is still high...
Steve
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Post by isobelle44 on Dec 31, 2009 20:55:35 GMT -5
My 2009 passed with a few small changes in my condition. Its been alittle up and down. But i dont think i will complain. I think it went pretty good. Now if i can only get the rest of my life to level out i would be extremely happy. Well, im happy most of the time. I just wish i didnt have to think so much! Cheers to 2010, lets hope its full will great success stories we can share in Jan 2011. Sharon
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Post by jeffn on Dec 31, 2009 20:59:00 GMT -5
My year will have to go down as a good one with progress. I am really in a good place right now in spite of the SD. I feel I have moved to a point where SD does not define me anymore. Oh it is still there but physically and mentally I have gotten beyond many aspects of the disease and have a good quality of life. That has to be a good thing right? Granted it could all be very transitory but for where I am right now I'll take it and enjoy life as it comes.
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Post by grammie on Jan 1, 2010 14:02:22 GMT -5
Last year was a fabulous one for me. I'd just been DX and am ever so much improved!!! There is room for improvement but I sure do feel ever so much healthier! I too don't look at my being an SD person but just one with 'funny' hands and feet....and my GI has improved too. I actually put on weight in December!
grammie
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joyu
New Member
Posts: 28
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Post by joyu on Jan 1, 2010 21:43:00 GMT -5
My goal is for a much better 2010!!! new decade,new BREAKTHURS!!!!
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Post by kathsherman on Jan 2, 2010 22:41:24 GMT -5
I am approaching year #17, living with sclero and I continue to feel lucky. Sure there are daily struggles (stay warm+rested), but all in all, I remain happily stabilized for another year. I am still an active busy wife, Mom and love my job and volunteer work...I've been told by several Dr.'s that "attitude is everything" while dealing successfully (whatever your personal definition of success may be...),with a chronic condition and it's true! Well, almost everything. Taking care of yourself and having good medical care is key. To all my sclero-board friends.....I wish you a HAPPY NEW YEAR! Love you guys/gals...xo Kathleen
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Post by antonietta46 on Jan 3, 2010 20:15:45 GMT -5
I will say that my year was a successful one in that I managed to stay out of the hospital and finally have what I would like to call a normal life style. Kathleen "attitude" is definitly everything! With the right one we can all beat this disease or at least put up a good fight . Looking foward to another successful year even if I do have scleroderma it will not keep me down! I have joined the gym and am so ready! Everyone enjoy and be Happy & Healthy! Antonietta
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Peggy
New Member
Posts: 33
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Post by Peggy on Jan 3, 2010 20:37:26 GMT -5
I guess I would say that my 2009 was good and bad. My lungs continue to get a little worse and my pain has increased but I would also say that it could be worse. I continue to fight and continue to try and realize when I'm having a "good" day and delight in those days. When I have those "bad" days well "it is what it is". That has become my mantra and my hubby even got me a bracelet for Christmas with that saying "It is What it Is". I am hoping and praying that 2010 will be a year where this disease will stay at bay as well as lymphoma and the lung nodule issue. I hope and pray that all of my sclero friends have more "good" days than the "bad". It can always be worse and I so feel for the people who suffer so greatly from this disease and others. God bless them all.
Warm hugs, Peggy
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sammie
Junior Member
Posts: 64
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Post by sammie on Jan 5, 2010 9:31:04 GMT -5
I have to say 2009 was not a very good year for me, with one problem after another. My rheummie and GP both say I am ver y complicated and cardiologist says I am 'unique'
I continue to have a positive attitude and I can say that I only had pneumonia 2 times in 2009, so that is quite an improvement. I think the IVIGs are helping me and my lungs are now stable.
I think 2010 will be a much better year. I am a fighter and determined to have a better year! And I hope everyone here has a healthy year as well.
Sammie
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Post by peggypansy on Jan 9, 2010 17:10:02 GMT -5
It was a bad year in that I (we) had to pay over $8,000 out of pocket for procedures and tests, but a good year in that I'm ok and leveling out w/more medications than I've ever taken before, but still doing pretty darn good considering. I think the worse thing was the lung damage from SD and also diagnosed w/asthma. Getting back my air is so very important. Practicing deep breathing and still smiling!!!
Peggypansy ;D
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Post by klw1960 on Jan 26, 2010 16:53:51 GMT -5
2009 was okay....I made it through which is a positive. I hope 2010 is better. I would not be here today if not for the support of my family, friends and co-workers. My hands are worse but I would say the rest of me has stayed about the same.
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Post by Cubby on Jan 26, 2010 19:37:43 GMT -5
2009 was a good year for me. Like JEFFN said above, Scleroderma no longer defines me. Sometimes, I feel like I never had it at all!
All of my symptoms are gone except my fingers remain slightly curled. They will not go flat, so I still can't go to YOGA. However, I continue with water aerobics 5 or 6 days a week and I love it!
The knee replacement I had in August 2008, completely healed in 2009. I never had the other knee done, like I was supposed to do. However, I walk pretty well, so I will not have that other knee done until I have no choice.
Scleroderma ruined my 4 front teeth. They kept breaking and I kept having them filled. Finally, the dentist said I could no longer have them filled, and I had to have them replaced. I got 4 new crowns last summer and they look great and I am thrilled!
I finally lost the 30 lbs I gained when I first got sick which was March, 2004. I can't believe it is almost 6 years since I got this!
We continued to go to the east coast (Delaware) where we still have a house. The only bad thing is that we never go on any vacation, other than back there. However, we love it there, so I don't mind. I did get to Vegas last August and finally met BEEBELL and her wonderful hubby!
I continue with Photopheresis treatments but now they are every 13 weeks, or about 4 times a year. I also still take Minocin but am down to 1 pill a day! I also take ZEGARID for acid reflux. I take no pain pills at all.
I am so blessed and so lucky to be in this position. I will admit, I don't believe I could have done any of this without my husband, Michael and my little dog Benson, whom we got, when we lost Cubby. (Mike and I will be married 30 years this May!)
Anyway, I am so healthy and so happy! Someone in heaven sure is watching over me!
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