Is there anyone with scleroderma who takes medication and is living at close to normal life?

[NoWaySclero]

[Yorky]

Yes, I would say I do. Although the temperture today has dipped and it has been troublesome, even just in the house. I have medication for the acid reflux and Sjogrens. I have been out to my normal Tai Chi class and then on the bus to do shopping and then the bus followed by a walk home. The fact that I was wearing a thick long skirt covering up my sheepskin boots with my electric insoles, with the battery packs clipped to the top of the boots would not have been known to anyone. I also had silver fingerless gloves under my thick wool mittens and a hotrox warmer in my pocket, a thick padded coat and a hat. It is in the summer when I am still wearing woollies and gloves that people find me a bit odd.

[nannysue1950]

Yes, I would say so. Anyway, what is normal? You just learn to adapt. I am 61 years old, have had raynauds and scleroderma for nigh on 12 years and, of course, my condition has worsened over time but it has been gradual and so I have been able to adapt myself. I work part-time (21 hours per week) in, would you believe, a doctors' surgery (not my own) where the 3 gps know very little about my medical conditions. I know that I am very fortunate to have a husband who, although not always very understanding, is very helpful in practical ways. Yes, I take medication for acid reflux and also for my lung condition but I don't dwell on what I can't do but just get on and do what I can. Sorry, if that makes me sound very holier than thou - didn't mean it to come out like that. Of course, we all get our 'down' days but, thank goodness, the positives outweighs the negatives and, after all, what's the alternative??

[Helen_J_P in reply to nannysue1950]

Thank you Nannysue...so encouraging to hear someone's response which mirrors my own (mostly successful!) attempts at being positive and pragmatic!

[NoWaySclero]

I asked the question because I keep reading how bad people are doing with sclero and I dont have any major problems since I been on meds. Things may change for me when I am off the prednisone but right now life is back to normal with some bad days.

[Noni1]

Hi

I too lead a near normal life, only taking something for reflux! I have days when my hands don't work but in the main, I can get on with most things. It's just a case of doing what you can and accepting that some days you have to take care.

[Helen_J_P]

Great question! Like you - 'normal with some bad days' - but I try to think of it as a NEW normal (My old, old normal was running for fun...my old normal when I was really poorly was 'ONE DAY AT A TIME' and my new normal at the moment relies heavily on pacing and planning. I have mixed CTD (sclerad, dermatomyositis, reynauds) diagnosed 07. Now on management pred dose (2.5mg daily) plus usual extra meds! My 'new normal' changes & it's a process you work through. Don't allow occasional setbacks to set you back!!

(Few weeks ago, I broke my hip aged 49 - steroid meds/osteoporosis)

I have tried to adjust to make things as 'normal' as I can for myself -eg 'power' napping, staying warm, silver gloves & socks from RSA website etc etc. The etc etc will be personal to you - as each of us have symptoms etc as unique as we are! I was (and still am I hope after xmas) working half-time. Have worked full time but it's really hard going in teaching & I'm learning not to push too hard. Just try to get enough info about the condition(s) to inform yourself to help yourself - try not to let it take over - too easy to obsess! Nannysue -I agree Focus on the positive - what's the alternative? I'm trying to get Better...not Bitter! x

[Jensue in reply to Helen_J_P]

I am a retired teacher (got IHR) and while working found it very hard particularly since I was a primary teacher. Going out on playground duty was a killer for me because even with all the gloves, hand warmers etc I still found that my hands took about 30 mins to recover & during that time they just didn't work properly - couldn't even hold the whiteboard pen! Since retiring life is somewhat easier for me to manage especially since during the winter months I know I do not have to go out in the cold.

[Helen_J_P in reply to Jensue]

Hello Jensue,

Yes, I also try to perch or sit during playground duty (primary too!) as standing/walking that time is so energy depleting for me esp if trying to stay warm. I'm off at mo due to broken hip (at work) which is pinned (too young for replacement) so looking into Access to Work for when I return. Are you UK and do you know anything about this? Up till now, the only 'reasonable adjustment' I've asked for has been a swivel, wheeled office chair which I raise the height of (I teach aged 6/7)

[Jensue in reply to Helen_J_P]

I am from the UK & I got IHR unfortunately for me my school was neither supportive nor helpful in any way and would not try to make any adjustments even though I was covered by DDA. I had support from the Occupational Health Doctor but school ignored his suggestions or my attempts at going part time. It was hard because like you I would get easily exhausted & so tasks would take me an age to do so I was putting in some long hours to try to keep up.

[dawng8500]

I couldn't answer better than any of the above! I've been diagnosed with Systemic Scleroderma for 10 years. I'm on Tracleer, Revatio (for the Reynaud's), water pill, and Nexium.No,I'm not as good physically as I was 5 years ago, but I can still ride horse (although limited to an hour and half), and walk (although I need to stop and catch my breath more often). Attitude is EVERYTHING! I have learned to enjoy the small things in my life, and I have found my life is really much richer. Sure, I have "bad days" when I growl and groan, but I'm alive, with my family, and I work. Life is a journey,and this is simply part of it - no more, no less.

[CWats]

I was diagnosed at 27 with CREST and until about 5 years ago after a horrible event in my life I lived normally (I'll be 48 next month), I no longer work and there are too many days when it's a struggle to walk from the bedroom to the living room (we have a small house). I am on O2 24 hours a day and lots of meds. I'm certain that I would still be living "normally" if not for the extreme distress of said event after which I was diagnosed with PTSD.

[jen1969]

my mom did a study and took D penecillamine (I think that is how you spell it) anyway she lived a relatively normal life for 10 years most of her skin reversed and she could even tollerate the cold a bit easier

[MARCY]

Yes, I was taken off every pain pill, nausea med, heartburn med, muscle relaxer, anxiety med...etc. Then hospice put me on liquid morphine, stool softeners, my thyroid pill, 5 mlg valium & lowest restrarill sleeping pill...thats it. I have been vomit free for the last 2 months, I am eating, no nausea, hearburn and I can keep down the nutritional suppliments (Resourse). I was told no feeding tube would work, they were preparing me to die. I am so happy, hospice took a chance, a radical chance and it worked. I have has 5ft of my small intestine removed, constant blockages!!! If you can get off all the pills which block your intestines, cause vomiting. I had lost over 30 lbs. in 6 mnths. Over the last 5 years I have been sick 3-4 times a day, but still I tried to eat, to keep on the weight. Then the bottom dropped out. I love my hospice people!

[Susiewinnie]

Hi, I take loads of medication and have a semi normal life.!