Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Scleroderma verses Lupus


  • Please log in to reply
3 replies to this topic

#1 Leslie R.

Leslie R.

    Senior Bronze Member

  • Members
  • PipPipPip
  • 43 posts
  • Location:New York

Posted 27 May 2008 - 05:07 AM

Today I went to my Rheumatologist and learn that Scleroderma, suppose to do certain things in your body. My face has recently have red blotches, like rash but is not, and the doctor said that the disease is looking for ways to breathe through the cells that provides oxygen. Some of the cell are blocked which cause the disease to go to other places, that will cause those vessels to inflamed. He said that the disease is basically doing what it suppose too, with Lupus it affects the body by making you feel good one day and then the next day you're not fine. He also told me that with Scleroderma it will affect my lungs or any vital organs, and that is why I will have to be monitored closely every month. There is no time line for when these things will occur but one way or another it will get worse before it gets better.

I have been coughing alot so I am seeing my GI doctor next week. I only think about just getting better and doing what's necessary to survive and beat this disease. Who wants to hear that your condition will get worse before it's better? Not me and I surgest no one should accept that.

#2 YFChoice

YFChoice

    Senior Bronze Member

  • Members
  • PipPipPip
  • 36 posts

Posted 27 May 2008 - 07:14 AM

There's a difference between hearing and accepting, without questions, that things are going to get worse....and hearing the reality that they will and then dealing with it. In my travels with scleroderma and lupus (I've had both for 26 years), I've come across many different ways people cope. Some deny that there is anything wrong and try to go on with their lives as if nothing is wrong. Of course that doesn't work. There are others that just accept that life is over and they can't or won't do anything ever again. Others think that they will go through a tough time and then things will be as before. Most of the time, none of these coping mechanisms work towards leading a productive life.

I like to face things head on. If my scleroderma is going to get worse, let me know. I want to hear it. Then I can fight it my own way. I know the disease will change me, but I believe I can make it work for me in my life. I can learn so much from having this disease.....I can become stronger. I can become more passionate. I can live life fuller. It's accepting the reality that scleroderma is going to change me but it's not accepting that I have no say in the course the disease is going to take in my life.

Maybe I can't change physically what scleroderma (or any disease) will do to me, but I am in total control of how it will change me mentally. I can be as strong or as weak as I want to be. I choose to be strong.
~ You have to think anyway.....you might as well think big

#3 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 28 May 2008 - 09:33 AM

Leslie,
I'm certainly no doctor, but I have never heard scleroderma described or discussed in the way your doctor has discussed it with you. Everything I've read and have been told by my doctors is that scleroderma is totally unpredictable and no one knows what - if anything - will happen. Scleroderma may never affect your internal organs. A well-known scleroderma specialist, Maureen Mayes, wrote in her book "the Scleroderma Book" that for some, scleroderma is simply a nuisance but for others, it can be life threatening. So please don't sit around waiting for something to happen because there is a good chance nothing may happen. Continue to live your life the best you can and enjoy! YFChoice provided some great advice.

On my sunshine days, I do as much as I can and on my cloudy days I take it easy.

I'm glad your doctor is going to continue to monitor you. I get some tests every 6 months and others once a year, just to make sure that nothing new is progressing. So just stay on top of things - that way - IF something comes up - if you catch it early. But remember - there is life after a diagnosis of scleroderma. I'm finishing out year 5 and I have a great life. It's different, but it's still good.

Big Hugs to you darlin,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Leslie R.

Leslie R.

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 43 posts
  • Location:New York

Posted 29 May 2008 - 01:56 PM

Thank you Janey,

That is what I plan to do with this disease, but sometimes it can be very difficult. Take for the past 2 days I have not been sleeping well, my skin is tightening more around my neck, under arms and under my breast. It feels like my body was beaten up, I am in so much pain that I had to take my pain meds. My right hand is swollen the joints are stiff and the itching of the skin is getting worse. I am going to see my Rheumatologist next Tuesdaym because when I told him what was happening he became very concern. He raise the amiunt of the Prednisone from 5 mg to 20mg a day. Hopefully I will feel so relief. I m inspired by that you have survive this for 5 years and hope that I can do that too.


Hugs and Love
Sincerely
Leslie