Posted 04 June 2010 - 05:07 AM
I am a new member. I'm thrilled to find so many people who understand scleroderma. I'm 52 years old. I was diagnosed with diffuse systemic sclerosis (scleroderma) with polymyositis in July 2005. Is anyone else affected by polymyositis? I now have collected pancreatic exocrine deficiency also.
I had the 6 cyclophosphamide infusions and have been on CellCept for 4 years and all the usual pills. I can do very little for myself. I have a constant problem with reflux and gastro intestinal problems. I have lost the muscles in my neck due to myositis and can no longer drive. I'm 5 foot 8 and weigh just over 8 stone. I think I've come to terms with it, Ie just wish meals weren't so bland, and that I didn't keep loosing my balance, . I see a sclero specialist once a year now, before it was 3 times a year, I have a lung function and ECG later this year and my blood pressure is constantly very low.
I was depressed. This disease floored me I lay and did nothing but watch TV for 2 years solid (those days were the pits of the earth) and I had forgotten what bird song sounded like, but now I'm BACK and more inspired and fiercely creative than EVER AND I'VE BEEN BACK FOR 3 YEARS. - and this time its S E R I O U S. In fact I could say Mr Sclero bought it out.
Posted 04 June 2010 - 10:20 AM
Have a great weekend and keep posting!
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Posted 05 June 2010 - 01:21 AM
A warm welcome to this helpful and informative forum to you; I'm so glad that in spite of the problems you've had with the disease you're still hanging in there with a positive attitude which does go a long way!!
I have Systemic Limited Sclero and also tested positive Anti-PM/SCL which I understand is the antibody for Polymyositis/ Sclero overlap and unfortunately I do suffer quite badly with joint pains.
Like you I had 6 cycles of Cyclophosphamide and am now on a low dose of steroids and Azathioprine which controls everything very satisfactorily. Thankfully I don't (as yet!! ) have any gut involvement.
I look forward to reading your posts.
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Posted 05 June 2010 - 01:31 AM
Welcome to the forum! I always say the best people have slceroderma and here you are proving my point! I think an inital low period is quite common, I spent my first year sat on the couch in my dressing gown watching tv and doing very little else, now I'm into my 3rd year and my attitude to scleroderma is "bring it on!" That also seems to be a common response, at some point we come back fighting determined to give scleroderma a thick ear!
Take care and keep posting.
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Posted 05 June 2010 - 05:21 AM
Just wanted to say hello, welcome and nice to meet you, I like your attitude, with this disease it is attitude that helps you through it and you have plenty of attitude girl!!! Like you I am also 52, 5ft 8" and I am just touching 8 stone, the heaviest I have been for nearly a year, (did drop to 7 stone 8 pounds). I have limited systemic sclerosis with ongoing GI problems, malabsorption, pernicious anaemia, skin and thyroid involvement etc. etc. and suffer dizziness and occassional balance problems. I did have severe chronic fatigue last year, but some how managed to drag my way through it and now I take everyday as it comes and make the most of being able to do all the things I used to hate doing before this disease, because you never know when you no longer will be able to do these things, so I guess my motto is definitely ` carpe diem' (seize the day)
You take care and seize the day!
Posted 05 June 2010 - 07:19 AM
Just want to say hello nice to meet you. I'm a similar age to you but have been diagnosed with limited Systemic Sclerosis, I get a lot of joint & muscle pains but my Rheumatologist just puts it all down to Raynaud's, I also get reflux & have nerve issues too. Depression is part & parcel of chronic illness & I think just about everyone can relate to 'getting down' when first diagnosed, myself included1
Posted 05 June 2010 - 09:33 PM
Thanks for your reply. Sorry to hear you have joint pains, glad to hear the Axathioprine is working well. sherrytrifle
Posted 05 June 2010 - 09:38 PM
Thanks for your reply. I feel this forum is essential to help us realise that we are not alone, and I'm sure all of us at some point have felt we are the only ones. Sherrytrifle.
Posted 05 June 2010 - 10:31 PM
We have a lot in common. I agree with your philosophy. My real turning point towards a healthier attitude of mind was simply sitting in a recliner chair in my garden in 2007 (even though it was a cloudy overcast year), and just looking at the bluebells, listening to the birds singing smelling the fragrances, watching the clouds, and observing the insects darting about, all this I had missed! ( ignored the weeds). I used to be a keen plantaholic gardener you see, well I still am, but ferociously more so NOW. I travel the country visiting open gardens. My husband takes the place of my muscles in my garden. (No he's not always deliriously happy about that)
Garden sitting was subconscious, I didn't know what I was doing at the time but now I guess people call it nature therapy or "TAKING IN THE GREEN" as I call it. I really did feel I was absorbing green energy through my eyes. After 2-3 months of doing this I said good bye to the TV. It felt like bliss. I guess for others contact with animals or the sea is also healing. Anyway, it was a better environment to be placed in than the silent artificial misery of carpets, dust, cobwebs, and mind numbing daytime tv and hypnotic commercials. Glad you have tackled the chronic fatigue I'm sure you will continue to do so. How are you managing to maintain your weight now? Sorry for going on and on.
Consider the day seized.sherrytrifle.
Posted 06 June 2010 - 09:01 AM
so good to meet you on here! I am also an avid plantaholoic, and truly believe that my garden has kept me going when Ive felt like caving in, as more and more illnesses have mounted up over the years.
We have some similar issues. I am currently waiting the result of a blood test for myositis, as I have such sore muscles and joints. I also have diffuse sclero, overlapping with type 1 diabetes, autoimmune hypothyroid, sarcoidosis in my spleen, autoimmune hepatitis, Lupus and stage 3 kidney failure, (plus many others I won't bore you with). Luckily, I don't have much gastro involement, so my weight is still going up, as my darling husband insists on spoiling me with lovely meals!
I know gardening is not everybody's cup of tea, and some days my hands are so bad I can't do anything but look at it. But whatever we can do to make ourselves feel brighter, whether its reading a good book, or listening to music or phone a buddy, it will make us feel a little better and the body responds well to the natural chemicals.
Look forward to reading more from you now you are here!
Posted 06 June 2010 - 11:42 PM
Thanks for your reply. I'm sorry to hear you have so many conditions, It must drag you down at times, but yes gardening is a life saver and home grown veg are the best. Possibly the more ailments that brings us down the more intense and blissful those few precious moments are. We are hardy planters. None of us relish hospital appointments and doctors surgeries, as soon as possible I'm thinking, "I just want to get back to my garden, leave me alone". this summer is Open garden visiting time, if my body or the weather will let me. I wonder what other types of escapism other sclero friends use I would have sent a pm but I've got to work out how to receive one. sherrytrifle.
Posted 07 June 2010 - 12:18 AM
Deb 1 Million, it is great you have a husband that spoils you will good cooking. Oh to have a man that knew where to even find a can opener. Ha! He knows where the peanut butter and silverware are located. Other than that if he is hungry he has a car or can dial for food. He can build a bedroom set or a house but wants to stay clear of a kitchen unless the aroma's draw him in. I hope you have great weather this year to enjoy your garden growing. They do take love and proper care but the rewards are many.
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