I would like to introduce myself, my name is Sharon and I live in California. I spent a lot of my childhood years very sick all the time with croup.

 

I have had five back surgeries and one cervical surgery (non scleroderma related).  I also suffer from chronic pain and have rods and screws placed in my back for support. The back injury came from a car accident in 1985.

 

So the story goes on to say the least, as I never  use to feel very good a lot of the time but never knew why.  I continued working at the District Attorney's Office, despite how I felt, and suffering from chronic pain.

 

Then about two years ago I awoke in the middle of the night with abdominal cramping.  I had gone into the bathroom and noticed a lot of blood coming from the rectum.  I went to the  Emergency Room where I was admitted into the hospital  for a lot of tests. It was found that I had Ischemic Colitis and Antiphospholipid Syndrome (when the blood clots to quickly).  I was then put on Coumadin a (blood thinner) and Protonix for Acid Reflux. 

 

Well another year passed and once again I awoke in the night with bleeding, so again I was hospitalized. Then I began having a lot of hand pain so I went to a hand surgeon.  The doctor xrayed my hands and told me I have Carpal Tunnel and Cubical Tunnel in both hands and arms.  I also had blood work done at his request. I had figured the blood work was because he was going to do surgery on the Carpal Tunnel to start with.  The next appointment with the hand surgeon he said he got the results of my blood work and that the blood test he had done was an ANA. The doctor told me that I have a autoimmune illness and that he was going to fax all of the results to my medical doctor. 

 

I went in to see my medical doctor and it was then confirmed that I had Scleroderma but which form of it she didn't know. Then I was sent to a Rheumatologist who again ran more blood work. The next appointment with the Rheumatologist I was told I have Scleroderma/Crest/Raynauds. I also had high blood pressure so the doctor put me on Norvasc to prevent renal failure he stated and to lower my blood pressure.  He also stated that I had Fibromyalgia and that is why along with the Scleroderma my body aches so badly and my hands hurt constantly.  After seeing the Rheumatologist for a year he noticed that my face appeared to have a red butterfly rash on it and he ran some more blood work.  The results came back and he told me I have Lupus (SLE) along with Scleroderma and that it was an overlap to the Scleroderma.

 

I know that everyday my body just aches and my hands are very painful. I had to have my rings made larger because of swelling in the fingers. Some days I wake up and my face and hands are so swollen. I am constantly tired and get alot of nausea.  I am also on a lot of medication and take pain medication for the chronic pain and a muscle relaxer for the spasms I get or I wouldn't be able to function. I also suffer from panic attacks and headaches. The skin on my hands at times feels so very tight and it hurts to make a fist.

 

I also have trouble remembering things from one minute to the next.  I have noticed in the last two years that this disease has progressed.

 

I have found a lot of answers, comfort and support from the sites I belong to.  I have learned so much about Scleroderma just from the sites alone. I never feel alone with all of the support sites and now it gives me something to look forward to, knowing I have all of you out there.

 

Well I dont know what else to say other than its been a very long mission for me and I wonder what is really ahead of me?  I don't know and nobody not even a doctor can answer that question, as there isn't even a cure at this time.

 

    

I wanted to add this to my story as another way I feel.

 

 

We don't always have to be strong to be strong.
Sometimes our strength is expressed in being vulnerable.
Sometimes we need to fall apart to regroup and stay on track.
We all have days when we cannot push any harder,
cannot hold back self-doubt, cannot stop focusing on fear,
cannot be strong. There are days when we cannot focus on being responsible. Occasionally, we don't want to get out of our pajamas. Sometimes we cry in front of people. We expose our tiredness,
irritability, or anger. Those days are okay. They are just okay.
Part of taking care of ourselves means we give ourselves permission
to "fall apart" when we need to.
We do not need to be perpetual towers of strength.
We are strong. We have proven that.
Our strength will continue if we allow ourselves the courage
to feel scared, weak, and vulnerable
when we need to experience those feelings.
Today, help me to know that is it okay to allow myself to be human.
Help me not to feel guilty or punish myself when I need to "fall apart."
�?Author Unknown �?/STRONG>