Joanne

My name is Joanne.

I am 44 years old and was diagnosed with diffuse scleroderma at the tender age of 30. When I was told what I had almost now 14 years ago I didn’t know what it was. At the time I was with my 6 year old daughter who heard everything the doctor was telling me, and being a child she remembered everything that was going on but didn’t say a word, and of course I was crying so much I didn’t even remember her being with me.

Well back then of course no one knew of this awful illness so I tried to inform myself but with no luck. At this time I was so sick I couldn’t even open my mouth to eat, couldn’t sit long without getting up and having so much pain in my legs and knees and of course the same thing if I was standing up. My hands were blue and white and I was freaking out.

I called back my doctor and asked him, “what is going on, help me please.” Well his answer was this scleroderma is a fatal illness and 35% of people who have it can survive 7 years. Well to me, this meant I was going to die soon of this since it was almost 14 months since my first symptom and it took 13 doctors to just find out what I had. All I wanted was to live and live a normal life with my husband and my daughter. I was so negative that nothing mattered anymore all I thought was that’s it I’m going to die.

One day my mom told me to see an acupuncturist. I surely didn’t feel like it I was not into seeing anyone but my doctor. So with all the convincing I gave in - I had nothing to lose but to get better and that’s all I wanted deep down. I went to see this acupunture and could hardly walk and of course I couldn’t open my mouth bigger than to put a straw in it. My face was discolored with yellow and greyish color and my whole body was changing color. I was just awful to look at. I even noticed my upper lip was caved in and of course my teeth were not what they used to be. So away I went and after a few treatments I began to feel a little better, the discolouration went away slowly but now it’s all gone, my mouth is fine now I can stick out my tongue - I couldn’t do that before. Well not all is good. My hands are still as they say praying hands, but I am determine to get the best of this awful illness called scleroderma.

Right now I am entering my 14th year and of course things are not all that great but I am and will continue to be positive for as long as I can. I like to take walks and just breathe in the good air and to appreciate life for all it has given me even if there are and were ups and downs. You know since this illness I’ve learned one thing - the sun is warmer and nicer the sky is much more blue and of course that grass is of a beautiful green color, something that before I had not noticed. I guess you learn to love what you have and appreciate life much more

The only thing I can say is this I do know how much this illness is painful but I have learned to live with its awful pain 24 hrs a day 365 days a year and that is something.

Well as for special people in my life I can only think of one and that is my daughter since she and my mom are the only thing I have left. My husband passed away going on 2 years this June and that of a brain tumor and he was only 41, never ill always in good shape and the worst thing of all this I thought I would definitely leave before him and always told him he would take care of our daughter when I leave and he would say of course. So you can see how God can and does things his own way. He left and I’m still here and now more than ever I have to stay strong and fight all the way so I can see my daughter one day get married and live a long and healthy life full of happiness something that I did not get.

I read almost all on this site and I have never told or written anyone or anything about my illness but I do have to say that all of you who have scleroderma I know what you are going through because I am living the same thing all of you are. I do know it is difficult but everyday is a new day and who knows maybe one day they will find something to help us at least help us control this illness, and maybe even a cure.

I hope I will continue being positive and keep on saying that I will beat this illness and live a long happy life, which I hope for everyone who has scleroderma. Keep on being positive and just one more thing my doctor used to tell me this and please keep it in mind it does work it did for me:

"JOANNE THE MIND MAKES THE BODY WORK"

9/26/2001 - I'm not doing too too well these days but I well keep you updated. I'm rejecting my food a lot - my esophagus is not working well, it's full of ulcers from the scleroderma and my digestive system is not functioning properly. But, hey, I'm hanging in there, still positive and I'm still here, so that's good!

UPDATE 3/2005:
Well hi everyone,
Its been a long time since Ive been on the site I was wondering if my story was still here to my surprise it is and Im very happy. Well first of all my beautiful daughter Is getting married in October 2005. Im so proud and happy.
Hey I made it! I will see this wedding of course I will walk her down the aisle but one thing Im sad about my husband wont be there physically but he will be there with us Im sure. As for my illness its okay. I guess not what I would want it to be im not eating as much only a little at a time so I wont reject my food. Oh there is so much more to tell you but I guess Im so happy with the wedding and all all I want to say is take a look at me Im still here after all these years and I finally made my dream come true seeing my daughter my one and only get married! Now all I have to do is go on to see my grandchild, my first and who knows maybe a second one. So you see wishes and dreams do come true if you stay positive like me.

I love you all.

Joanne - email mindy_isa@hotmail.com