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Carrie: CREST Syndrome

I cannot have a crisis, my schedule is full.

All this started in 1995, as far as receiving any diagnosis. First, I was diagnosed with breast cancer. I went through radiation and chemotherapy.

Then I went to a rheumatologist. He first diagnosed me with fibromyalgia (FMS). I had swim therapy and that helped some. Then the first rheumatologist left the area. I was still having extreme discomfort so I went to a new rheumatologist who had replaced my first one. She did blood work and my antinuclear antibody (ANA) test result was very high. That is when she told me I had CREST scleroderma. The last ANA test showed it had elevated substantially. After much research, I was rather concerned, especially when I found out there was no cure.

I have, as a rule, learned to live with most of the pain. But I find that when I become very upset, or catch a cold, or have an allergy attack, the condition worsens.

Then my husband was injured in 1996. My husband's accident left him a quadriplegic. He was having a lot of pains that were incapacitating. I am his sole caregiver as well as my own.

I have no support within the community. It seems that caregivers of quads go into some kind of hiding. Therefore, we are left with no support, and with no support for my illness.

I am also under the care of a psychologist. Dr. Regan just keeps shaking his head at how well I have maintained my life. He has offered me a bed at the Pavilion, an inpatient hospital facility, if I ever need it.

Right now I am trying to deal with issues at home and also issues pertaining to my father's death in January.

It seems that it never ends. I have a key chain that says "I cannot have a crisis, my schedule is full." But it always seems there is one crisis after another. I do not know what else to write, so if you have any suggestions that I can incorporate into this story, please feel free to e-mail me and let me know.

~ Update 07-06-04 ~

I am having more problems with my hands as far as the Raynaud's goes. I am also beginning to have chest tightening and irregular heart beats. I have been going through a new series of testing to see where I am at now. Even though I normally have low blood pressure, it has now dropped to the 80's/over 50's. My doctor says that I have to stay hydrated. That is not a problem as this disease also affects my thirst. The only thing that takes care of the thirst is drinking six to ten glasses of water a day.

I will also be having nerve conduction studies done to see if carpal tunnel is causing my arms and hands to go to sleep no matter what I do. Sometimes they are so bad I will not drive as I do not trust myself to handle the car in a tight situation. This numbness of my extremities has also affected my legs. I find if I sit too long in one position my legs go to sleep and then it is with a lot of effort for me to get up.

My husband passed away on December 23, 2003, two days before Christmas. This first year so far has been the hardest. I thought I had prepared myself for the inevitable, but I find that I really did not. I miss John terribly.

I had to move from our house because the memories were really sending me into a deep deep depression. I am doing better in that regard, but the pain and the loss are still very much in the forefront. The only comfort I can take is that John is in a better place and not a prisoner of a body that did not work. When he passed it had been exactly seven years from the day I took him home. Everyone said I would not be taking him home at that time. Like I said at the services, I had him to love for all those seven years.

I do not know what else to write, I am not very good at talking about myself. If anyone has any suggestions what I should or should not add, maybe you can help me.

~ Update 08-22-05 ~

It has been almost over a year since my update. I am doing okay and am still blessed that my pain level can still be handled with minimum pain relievers as I cannot take most, if not all, that are on the market today.

I am drawing Social Security Disability now and with the widow benefits I live just okay. I do not go the doctor, or get my medications, as all the insurance I have is Medicare. That does not cover but a very small portion of the doctor and/or treatments or testing that may need to be done and does not cover any medications at all.

I still miss my beloved John, and it helps me tremendously that I have my computer friends as with the condition now affecting my breathing capacity, I do not leave the house unless I really must.

I have five furry babies and they really make life much better for me. I think that will be about all I can add to my story at this point. Anyone may contact me if they wish and I will be more than proud to become their friend.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Sherry Jo Young

Sherry Jo Young was the ISN Story Editor for this story.

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