What about the family?!
Posted 07 September 2008 - 03:16 AM
My sister was diagnosed with scleroderma 9 years ago, she was doing just fine, until she had her cute little boy 2 years ago. She starts suffering from chronic pain, fatigue, insomnia, infected lung and depression.
She was not given any meds, she participated in the SCOT study (Scleroderma Cyclophosphamide or Transplantion), and the doctorsaid that she can't do any thing now, and she'll have to wait until he can proceed with Chemotherapy ?!!
She went back home, surprisingly she was given meds but nothing for her pain, and now that she is back here she stopped taking her meds, stopped talking to a lady in a meeting, she is not doing any thing to get better.
I'm sooooooo scared that my sister is loosing her battle.
I feel hopeless, I don't know what to do to help except calling her every day, she lives in NC and I live in Toronto Canada.
I'll be grateful if you can give me some advises, books to read/special staff that I can buy for her (clothing, creams...), or just what do you think she needs me to tell her or do for her, because the only thing she wants from me is visiting her, but it's almost impossible.
Thanks a lot, and have a wonderful day.
Posted 07 September 2008 - 06:06 AM
It will help her to talk to someone about what she's feeling and going through. She has a young child so she needs to be as strong as she can to take care of him. Are there any family members near her that can check on her and keep a close watch on her? Having family and friends near me helps me tremendously. This disease can leave you so tired, fatigued and achy that you can barely move around. I need support to help me around the house and to get to appointments when those symptoms really hit hard. If no one is around her would she consider moving closer to family? Do you know if she has ever visited this site? With this disease being so rare and the medical community not always having a lot of understanding of it, I have found the comraderie here to be better than therapy. There are people who have been dealing with this disease for decades and just from their experiences and positive outlooks overall I have become stronger in facing what I'm dealing with. As you can see if you've looked at some of the posts the support is second to none. I wish the best for your sister and you as you are doing more than a lot of family members do by seeking information on how to help your sister. She is really blessed to have you as a brother. Best wishes and if you care to keep us posted.
Posted 07 September 2008 - 06:18 AM
I am sorry to hear your sister is suffering from so many things right now. I can understand how easy it is to go into a depression when you are in pain, fatigued, getting very little sleep and trying to care for a toddler. Did the doctor say why they couldn't proceed with the transplant? Does your sister see a rheumatologist specializing in scleroderma in her home town? If not, encourage her to make an appointment as soon as possible to address her present medical concerns and especially get medication for the pain. Maybe the medication she was given before isn't working and her doctor should consider giving her something else.
I feel bad to hear she stopped taking her medications and in a sense has isolated herself with the exception of her close relationship with you. Don't let her give up. Stay in contact with her and keep reassuring her that her condition will improve. Maybe she is overwhelmed with the house chores, cooking, childcare and so forth, not to mention the chronic pain. Discuss ways someone can help her until she feels better. Your sister needs your support even if it is just a phone call where she can vent her feelings. Living so far from each other makes it difficult for you to visit her but calling every day is the best solution economically.
I am glad you found our forum to find ways to help your sister. You are doing the best thing for your sister by supporting and loving her. I can't think of any specific lotions or creams but there is a wealth of information here and I'm sure many others will offer you advice.
Stay strong halimahab,
Posted 07 September 2008 - 06:53 AM
First of all your sister is lucky to have you! You are a blessing to her and for you to seek out help on her behalf says alot. She sounds like she has maybe come to a point where she feels helpless. There are so many meds out there that can help with pain and with this disease you have to stay on top of it or it can get to the point where it's unbearable. I too took cyclophosphamide and then had to quit it as it was attacking my bladder. I have now been on Cellcept and it has helped my skin tightening for a little while, only now it seems to be getting worse. But I do know that everyone's disease is different and there are so many here that have had great results with different therapies. Is there a way you can get her to come to this site and vent? She may need to talk to someone who knows what she's going through. I know this site helps me so much I can't imagine being without it. When does she go to her sclero doctor again? She may need to be seen and evaluated so they can determine the next course of action. Just continue being there for her as you are so very important to her.
Posted 07 September 2008 - 07:29 AM
I am so sorry to hear of your sister's difficulty but you have certainly found a wealth of information on the site and potential for support in the ISN Sclero Forums. If it is at all possible, please invite your sister to join us here. As many will tell you, often just having someone else to talk to is an important step.
As others have mentioned, coping with such a distressing disease can be difficult at times. You may have some interest in reading our page on Emotional Adjustment and Scleroderma, including the personal stories in each category.
In fact, our Voices of Scleroderma series of books are top-notch resources for scleroderma information and support for patients and cargivers. Each includes informative articles from scleroderma experts and personal stories from around the world.
I look forward to getting to know you (and hopefully your sister) better as you find your way around in the forums.
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 07 September 2008 - 08:01 AM
You are a good sibling to try to help your sister! I don't think I can offer much more than anyone else already has. Does your sister have help in NC for her and the baby? Perhaps she is just very overwhelmed with feeling so unwell and having such a little one that needs so much care when she feels unable to do it? I agree with the others, if she would at all consider joining this site, she might not feel so alone? Just keep doing what you're doing, calling her, etc. I hope you stick with us and keep us updated. I'm also from Canada and there is also a number in Ontario you can call to get yourself some more pamphlets/book information too. You can get it from the website of the Scleroderma Society of Ontario They could mail you a package with information, if you want that as well? Take care.
Posted 07 September 2008 - 08:28 AM
Calling and contacting her often is a good thing. As well you can, don't let her put you off, but remember she has to want to move forward. Being patient and a willingness to repeat yourself in a non-judgemental manner is probably helpful.
Is post-partum (post-pregnancy) depression just adding to the mountain of other symptoms she needs to deal with?
I often cling to a couple phrases my doctor has used to push me to deal with all this - "Don't give up - don't sit still - keep moving" "It is the direction that is important, not the speed"
My heart goes out to you and your family.
Posted 07 September 2008 - 08:37 AM
You have recieved excellent advice already. The only thing I could add is...
Many have ask if there is someone there to help her. If she has religious beliefs, she may get help from her local spiritual leader.
Raynaud's, GI, esophagus, skin and lung involvement.
Posted 07 September 2008 - 11:40 AM
What a wonderful person you are. It is nice to see family caring for family.
I can't think of anything that has not already been said. The support here is amazing and the information under medical is un-ending. We would love to have your sister join us too and I will hope for that. It is great that you have joined us and welcome.
It is very difficult to know someone you love and care about is feeling so ill and not be able to be with them. Your phone calls and e-mails to her (if she has a computer) are tremendous tools. We will support you through you trials.
A big hug for you,
Posted 07 September 2008 - 12:39 PM
Like yourself my husband is a carer (mine) and rarely does anyone ask how he is. How are you in all this? It's great what you are doing/wanting to do for your sister but just remember that you are not responsible for what she does/does not do. All you can do is try to provide the best care you can obtain and clearly you are doing that.
Encourage you sister to engage with other sufferers because there is real power in speaking to someone who is having the same experience and can speak with the authority that experience brings.
For yourself this forum is here as for your support and guidance.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 10 September 2008 - 05:38 AM
I'm sorry I'm so late in welcoming you. I'm glad you have joined us, you will receive a lot of great information and support for both you and your sister here. I hope the information and links you've been provided thus far have been helpful. Our hearts go out to you and your sister. Please keep us posted.
Posted 10 September 2008 - 06:25 AM
I really don't know how I can thank you; no word can express how grateful I'm.
I wish I can hug every one who e-mailed me or just took time to read my letter.
My sister is in much better shape, at least psychologically, than the last time I've wrote to you. I guess itâ€™s the ups and downs that each of us experience. She just saw her Dr 2 days ago, he sad there is no MAJOR change in her health, which I take it as a good sign, and that she 'll have to keep taking the same meds given back home. She asked for referral to any clinical trial in her region. She also starts talking to one sweet lady in a meeting. We also discuss joining your forum, and she is more than happy to do so. The good thing is she asked to see a psychologist for her depression, and I guess it's a major step to her wellbeing.
Thank you again
P.S. Joyfulness is half our health
Posted 10 September 2008 - 09:33 AM
That is great news...keep up the good work with your sister....I'm so glad that things are starting to turn around for her/you now.