RIP Shelley

[iconcur35]

My sister list her battle with scleroderma and pulmonary fibrosis on May 18, 2012. I am here to help anyone with what I've learned from these ugly diseases. She also had raynauds. She will be missed dearly. If anyone has any questions I will try to help in anyway. God bless you all.

[iconcur35]

OPPS lost

[wartsandall]

God bless you. I have also lost a sister, but not to the disease your sister Shelley had. I have the same conditions as Shelley, and fully understand the devastating effects of the disease. Times will be difficult for you, but you will feel comforted by the memories you have engraved in your heart. Your sister will be very proud that you have taken the step towards helping people who have raynauds, scleroderma, fibromyalgia and all of the problems that come with it. Thank you for your kindness, I'm sure you will help many fellow suffers with your advice and support. God bless and take care Linda x

[flickchick777]

I am so sorry for your loss! Would you mind sharing how old she was, and how long she had scleroderma?

[SandraMarie]

I am so sorry for your loss. I have similer conditions and have recently become quite scared. I've always been so positive generally,but it's the not knowing how long is left (and I know it's different for everyone) but just to have a vague idea as to how long the lungs can go on with it.If it was just me to worry about I could deal the day to day of it, but I'm desperate to see my youngest boy reach adulthood and be settled on his way. Consultants don't seem to want to give you any idea either way for fear of repercussions. I know it's not black or white, but just to have an idea, or the worst case scenario. I hope it wont be too painful for you to talk about your sister. xxx

[zenabb]

Dear SandraMarie,

My cousin in America had a stem cell transplant and she is fine years later. Her lungs were dreadful and she had to go round with oxygen, give up her singing career. Ask your rheumatologist about a stem cell transplant.

[iconcur35]

My sister was diagnosed 1 year ago. It progressed very fast. Her first sign was raynauds. That started about 10 years ago. No one even know what that was. She had her finger amputated. After her diagnosis with Scleroderma we learned that the raynauds was the first sign. When it's in your lungs the pain meds you take for the excruciating pain will suppress your breathing. So we started Shelley on Bowen Therapy. It worked great for the pain. She didn't need the pain meds any longer. They also have a move they do to help clear your lungs. It's basically karate choping your back from the bottom up several times. Google Bowen therapy. It's wonderful. Sometimes it takes up to four sessions. One a week before you reach full benefits. She knew when it was time to go. She felt it. There is also a diet called macrobiotic diet that I would recommend. I hear it does wonders. We didn't have enough time to try it out. It is a very strict diet. Please don't any of you give up hope. Pray to God he does hear you. I now care for my 3 boys and my sisters 19 and 13 year old. My brother in law is a truck driver and can't be home. I will pray for all of you. Please try not to guess how long you have just live it one day at a time and make every day count. Every week it seemed she was diagnosed with something new. In the end Shelley was on 16 liter of oxygen and so bloated from the steroids. She couldn't get around to fast but she walked every day. I don't want to scare any of you. I just want all to know. Thank you for your condolences. And please don't give up hope. I hope I answered your questions. If not please I beg of you ask me anything. I will be honest. God bless all of you.

[Marytsa in reply to iconcur35]

Sorry for your loss!!!!

[iconcur35]

Also the dr told us that scleroderma wouldn't end her life it would be a heart attack or something. We started her on hospice so we didn't have to have a autopsy. But more than likely the scleroderma didnt end her life.

[iconcur35]

She only had 30% lung compacity left.

[britty]

so sorry for your loss I list my sister through cancer two years ago very aggressive . I hope that you are getting support for your loss and how wonderful of you to think of others like her I feel ?I am very lucky as I have raynauds and erythromelgia not life threatning but a nightmare to live with with the menopause added on . I recently had iloprost in the royal free hospital and think it is starting to work please god I met some lovely people also in for iloprost when I was there .God bless and stay strong all of you x

[britty]

oops me to lost

[dex1]

May your sister rest in peace. My thoughts go out to you at this difficult time.

[iconcur35]

Thank you. She was 39 years young. @Britty please get tested for scleroderma. The sooner you're diagnosed the faster you can get it slowed down. My prayers to all of you.

[living-the-dream-ssc-ray]

iconcur - I am so sorry to read of your loss...; your sister sounds as tho she was very brave and the knowledge that you now have in helping others with a similar diagnosis is probably superior to most Doctors.

I was diagnosed with the diffuse form in 1997 at the age of 24, and now it is the severe Raynuads which is my biggest challenge (following years of chemotherapy for the sclerosis), and has resulted in my being an eskimo looking hermit all year round.

Your sister was / is so lucky to have a sister like you... I have a sister who has no interest in my diagnosis .... this does upset me as when I was well and able to work (had some money in my pocket) and able to go out and about more, things were a different story ! I try to understand her behaviour by reminding myself that it can not be very nice for her, seeing the huge transformation with me ! I am 39 on Tuesday so I have found your post quite poignant !!

My heart and thoughts go out to you and I know that your sister will still be close around you, and that she more than appreciated the help, support and interest you showed to her during her scleroderma nightmare.

Love and best wishes to you x

[iconcur35]

I was the lucky one to have her. I'm sorry your sister is not around for you. I found it was very hard for my family to be around her. There were 7 of us. If you were around here I would be there for you. But I guess posting here I am here for all. They say everything happens for a reason. This is one thing I couldn't understand. If I lost my sister to spread my knowledge with others than that is exactly what I will do. I cry as I'm posting this. It's so hard to live without her. But her quality of life was non existent. I do know there is a book by Maureen Taylor. She also had scleroderma and she was not in good condition. She tried used the macrobiotic diet and she is healthy years later.please read her book. The only good thing I can make happen as a result of her death is for me to share everything I know. Thank you. I'm sorry I can't think right now God bless all of you!

[iconcur35]

Another thing as I'm trying to compose myself. I am so sorry your sister is reacting like this. There isn't anything my sister my bestfriemd in the world and I wouldn't have done for each other. Our oldest brother finally stated to come around after a while.one of our little sisters visited weekly. Our mom couldn't stand to see her in pain. I just wish everyone could see just how fragile life is. The memories that are built each and everyday. Please if there is anything I can do for anyone PLEASE I BEG YOU let me know and I will try my hardest. It's what I enjoy doing and I know it is making Shelley proud of me. I am going to take some classes and continue helping others that might not otherwise have anyone. Shelley also walked around like an eskimo we have so many cute and intetesting hats and gloves that she wore. I know God is watching all please remember to pray.

[suzy66641 in reply to iconcur35]

Hi I am so sorry to hear about Shelley. My own children worry that I will die from this illness and having been diagnosed for 12 years the thought does cross my mind too. My heart goes out to you and your family

With love and best wishes to you all

Suzy xxx

[suzy66641]

Also I find that I am very isolated with nobody to talk to about symptoms etc. My younger son is recovering from a stem cell transplant to treat Leukaemia and as you will all know the stress from his illness made my own so much worse. The pain from digital ulcers is indescribable. Does anyone have any tips for relieving it even if its only temporarily. Someone told me once that he sat with his ulcer submerged in neat whiskey. I tried that and it hurt even more, if it wasnt for the meds I'm on I would have drunk the stuff instead!!

Any tips or suggestions would be really appreciated

Suzy xxx

[iconcur35]

Suzy... Please tell your family and yourself to live all the days of your life without worry. I know it's hard believe me but that's what we did here at home. Worrying takes away to much special time. Most of the time we worry and it's for nothing. Don't count the days make the days count... That's a saying on a billboard at a local church.

Shelley had A Lot of stomach issues. What worked best for her was 20 mg twice a day of Omapazole for acid. Then we later added Reglan to help her stomach empty faster.

I hope this helps. And I pray for the best for you, your son and the rest of your family. Anything else please let me know. I'm here for all.