Newbie just diagnosed with Lupus and Scleroderma

[Ratdoc]

I just wanted some other people who are going through this to talk to. I don't have a lot of people who know what I am dealing with so Hello

[JayneO]

Welcome I can totally relate to how you are feeling! I have the same as you plus Pulmonary Hypertension. I know when I was first diagnosed I thought that my world had come to an end, thankfully 18 months on I now feel much better. Even if I take shed loads of medication. I have an excellent medical team. So keep your chin up, it does become easier, it's the getting your head around it all that takes the most time, learn to accept your limitations!!! Had keep a PMA take care Jayne

[Lyndabickley]

Hi

I've had diffuse scleroderma for 12 years now. I have some lupus indicators but docs don't seem concerned. I was very ill to start with but with medications it soon stabilised and although I have some disabilities as a result I am so much better and have an active life. I no longer take Mycophenolate, just medications for gastric reflux and blood pressure. Hope you will soon be feeling good again.

[Thelma]

I have Scleroderma complicated with Pulmonary Hypertension and Congestive Heart Failure, along with Raynauds - which effects my hands more than the feet. Over nearly 12 years, I've had several intense hospital visit, been in a coma and on life support during a hospital stay during 2008. First of all I have strong faith, am a Believer in CHRIST, and embrace life and have more hope and faith than many, with also being around an excellent support system, compassionate and caring medical teams, continuing to learn about these conditions and try to adapt and accept as best as possible to do all that I can to have some quality in life and be able to enjoy as much as possible. I always think of those who are much worse than I am, I focus on my blessings continuously as well. Some days are more difficult, and I just listen to my body and follow what it wants me to do; use heating pads, or stay in bed, try a stretch routine/yoga or sleep most of the day if I feel fatiqued. I believe it is essential to avoid stress and stressful/negative people as much as possible. We have a lot of awesome resources like the internet, blogging, research sources, meet-up groups, support groups, there are fitness groups all around us too. I am determined to have a 'life', stay as active as possible, avoid pity-parties when I'm not feeling so good and hold on to my hopes, faith, dreams and GOD. I hope some of these tips and practices may be fitting for you. Ratdoc, you will remain in my prayers. This is an excellent website for supportive and compassionate fellowship and we continue to learn from one another and as we continue to collaborate here at HealthUnlocked. I wish you and all of our website Family to have a great and positive day. God Bless.

[Ratdoc]

While I wouldn't wish this on anyone it's comforting to know that I'm not alone.. Wrapping my head around it seems to be the most difficult part right now.

[MEW53]

I was diagnosed with scleroderma 2 years ago and my world fell apart, however I have stabilised now with the drugs and just take each day as it comes. Just keep positive and seek help from good rheumatologists.

This is a great site, everyone is so helpful.