Feel so alone and helpless..

[cher]

Does anyone else out there feel so alone? This disease no-one has heard of and you can't get anyone to really get it. The red bumps ulcers, the hands purple blue, aches, pains, dry cracked so bad hands nothing works. Then lets throw in it's family members R.A., scleroderma!! Not to sound like a debbie downer but I need some friends???? I hope you're out there...

[Anteater]

Cher, you are definately not alone... I use Aveeno skin relief moisturising lotion for my hands made by Johnson & Johnson as they can get very dry and crack, I find it very good but have tried loads and loads of different creams and found this one best xx My raynauds was diagnosed when I was a teenager and Scleroderma in 1992 but had the symptoms long before. I suffer from Ulcers on the tips of my fingers epecially my right index finger and have also lost some of the bone from the tip and always feels tender. My fingers are always tinged blue and suffer from a lots of aches and pains in my joints and body... I am now 55 so am long suffering still trying my best to live with it still. I also have numerous other auto immune conditions to contend with as well.

[uknlv]

Definetly not alone Cher, as you will see if you stick around 8) We have all been through most things, not all of us together hehe, but we have as a group experienced much of what you are going through.

It is really hard to stay up beat when you have these issues, but all you can do is try to stay positive and live life to the fullest that you possibly can, because the alternative is not worht it 8) I go through ups and downs, and lately downs have been more than ups. With all the stuff I get because of the Scleroderma and its relating issues, it seems when one thing starts doing better another part of the body starts getting worse. Is pretty daunting but I plug on and tell myself that things could be worse.

To top things off I fell and fractured my humerous about 6 weeks ago, and was hoping all would be back to normal with it, but apparently the steriods and other issues are making it heal slower. Sigh But hey I could of broke both arms and a leg lol!

Try to stay positive and if you need to blow off steam post here and we will do our best to cheer you up, or tell you how bad we are so you feel like you aren't so bad hehe.

Cheers!

[cher in reply to uknlv]

You are definetly from the uk my ex is from there he is the big problem for most of my horrible stress. But I appreciate your kind words and cheers to you. If I may ask where in the uk do you live? My sons great g.dad lives in england. I wish you all the good things that will keep you strong and healthy!!!!

[Helen_J_P in reply to uknlv]

Liking your encouragement to Cher! (all you can do is try to stay positive and live life to the fullest that you possibly can, because the alternative is not worth it) Agghh! Recognition! I fell & broke my hip (neck of femur) beginning of Sep - been pinned because I'm too young to have replacement. But have a similarly positive approach (mixed connective tissue disease blah blah!! since '05) Need to stay cheerful with delights of UK winter ahead! All the very best to you.

[txqueenb2]

hey there Cher you are not alone there are about 300000 of us in the US .keep you chin up and live your life to the fullest like uklnv said.

[OXMOAD]

I use Salex cream on feet and hands and arms. It is prescription but very effective especially when the skin is still damp and warm from bathing.

Also each fall I make up my own batch of lotion combining what I like to use. I'll grab Vaseline cream, one with vit E oil or just the oil, one with aloe, one with tea tree oil, just to name a few. I get a HUGE bowl and mix it up well and use the bottles to put my special concoction back in. It usually lasts all winter. Even my husband likes "my" lotion. He looks forward to see what I will use each year.

Another thing to talk with your doc about would be a paraffin bath. I love mine. It is big enough to immerse my feet-one at a time-. But that oiled paraffin makes me shut my eyes and remember slipping my feet and hands into the hot sand by the beach. Of course the texture isn't sandy but the mind picture is there. I can almost hear the waves and the sea gulls and the wind and smell the salty tang.....

[zenabb]

I get down every now and again, things can get bad and they can get better. It is not always the same. But I try to turn it into a joke, have a life and a lot of rests. Entertainment and doing things for others helps a lot.

[cher]

Thanks everyone for your kind words. I was diagnosed 11 years ago and have always tried to stay positive so much when I had my panels down they came back negative. This baffled my dr. but all systems go I still have Raynauds badly and sytemic sclerosis/scleroderma.... Lung problems, terrible connective tissue problems, my hands the ulcers and split open in 100 places hands. Plus the thickening in my hands. Best yet I am a massage practitioner haha the heavens had a funny joke for me giving me this diseaase and where I need it the most NOT!!!! I have always tried to be optimistic but lately the depression keeps winning. It is because the stress in my life. So hopefully by meeting you all I will get my spirits back.. Good luck to all of us and maybe we can campaign for MORE awareness with this mostly to others INVISIBLE disease..PEACE

[CWats in reply to cher]

Cher, too bad we don't live closer (I'm on the Eastside of the US). While my husband is wonderful and understanding as are my 2 grown daughters I am still very lonely. My husband works full-time and on his days off he's doing the housework/yard work/grocery shopping and taking me to Dr's appts as well as all the other numerous errands. My kids are both married with kids and jobs of their own. I have no other family here (they are in the midwest).

We live in my husband's very small hometown and the people here are not friendly to "outsiders." I have yet to meet anyone else with this illness. I lived in California for a few years as well. I would think I would have met someone else who has this awful disease! I too try to be optimistic as I know it could be so much worse!!!

It just seems that lately the bad days outnumber the good. I don't know what to do to change it. Most days I am to exhausted to get out of bed, I even "forget" to eat at times as it's just too much effort. I try "pumping" myself up, I'll even exercise sometimes (not easy to do on oxygen).

I know that by not doing anything I'm making my illness worse, but like I said I just don't know what to do. We only have 1 working vehicle that my husband uses for work so I am in the house for days at a time.

We live in a rural area about 10 minutes from town with no bus service. I joke with my husband about my O2 tubing being a leash but it really is. I feel trapped.

I don't feel I have a right to complain as my husband really is fantastic and I know I am blessed in so many ways. I guess I just miss living and having friends and swimming and going for walks and dancing, now I just read and watch tv. I apologize for carrying on so, I guess you could say you caught me in my pity party mode. Thank you for "listening" to me vent. I feel better now!