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Kristen: Diffuse Scleroderma

I thought I was going crazy.

KristenI am still rather new to all of this, but I feel like I have been living with CREST forever. I started two years ago with the doctors. My general practitioner sent me to a rheumatologist because I had an elevated antinuclear antibody (ANA) test. I was sent away after being told that I possibly had osteoarthritis! (At thirty-five?!) The pain continued and the swelling increased.

However, even my chiropractor knew something was up. He was the one who diagnosed Raynaud's. I have pain just going to a grocery store! A year and a half later, and with a new rheumatologist, I have a diagnosis: CREST. I thought I was going crazy. I did not know whether to cry over the diagnosis or feel relieved that I was not crazy. But then I began to read up on CREST. I have my days when I am scared about who is going to take care of my kids. I want to watch them graduate from high school. Am I still going to be here?

I have been switching from medicine to medicine since I was diagnosed. I cannot seem to stop this acid reflux. And the swelling is continuing, so Prednisone has been added.

It could be worse, I know. I read other people's stories and I am thankful, and scared. I just need to be thankful for the time I do have. It is just hard. But ask me in a year. I will still be here!

~ Update 12/7/02 ~

I originally thought I had CREST, but it has now been confirmed that I have Diffuse Scleroderma.

I am currently in what my doctor says is the active stage of this disease.In the last several months, my skin has gotten progressively tighter everywhere. When I was first diagnosed, only thirty percent of my skin was affected and now ninety-five percent is affected to some extent.

My hands have become extremely clawed, and so tight that I cannot make a fist or flatten my hand out.When I stretch, I feel like my skin will rip.Yet to others, I look fine.As with others afflicted with this disease, I have been asked if I have been tanning because my skin is so dark.

The scleroderma is progressing internally as well.My gastrointestinal system is being affected not only with heartburn but also with flipflopping between constipation and diarrhea.I usually get by with only one meal a day due to the fact that that is all I can stomach.

My muscles are being hit, too.I have myositis, which is when muscles get inflamed and weak.I have fallen up and down the stairs because of this and my back muscles are in constant pain.

Currently, I am going to be tested again for further damage to my lungs.I have pain in my chest and shortness of breath.The doctor heard what he called "crackling."

The good news is my doctor is a specialist in scleroderma, so I feel that I am in good hands.I think that am more aware of this disease than my family, due to the fact that I read as much as possible right away. They are in the "catch-up" stage.

Sometimes I feel alone in all of this.

~ Update 10-24-07 ~

I feel like this disease is the hidden monster. You know, the one that lurks in the closet and only comes out when you are really scared at night. When my stress level is up, boy does that closet door open wider!

Sometimes, it doesn't bother me much, and I barely notice that I have scleroderma at all. In fact, I just tell people that I have rheumatoid arthritis. It is so much easier and less time consuming.

But, then there are those days…well, those days. In fact, last night, I was eating or trying to eat a candy, and I choked. And I couldn't get it back up thanks to my lovely inability to swallow half of time. My esophagus is shutting down. What a joy! And then, watching my son's face as he watched me gag. What a treasure.

Also, my hands and joints hurt and I do nothing. It would be different if I did something. Then I could really complain. But otherwise, I feel that I have no reason to. So, I just pop my ibuprofen and shut my mouth. It is nice that I am losing weight. That is a treat, okay, so not like this, but you gotta look at the upsides in life, eh?

I didn't think that I would make it through even the first five years. If you read the medical books, they are all full of doom and gloom. But, hey, here I am. So I pop a few pills a day, no biggie. Who any more doesn't?

I would love to be able to still ride a horse over fences like I used to, but I don't know if that is the scleroderma or just plain fear and nerves that have set in. I know that I am making it through everyday.

There are things that I need to check with my doctors about and I don't. Okay, so I should. Bad, bad me. I will make it through to another year! Catch me again.

~Update 09-10-08~

I just went over my story from the beginning and mentioned to my daughter that it has been six years since I have been diagnosed! I really didn't think that I would make it this long—not since I was told that I had a "shelf life" of five years! I have seen my oldest graduate, something I didn't think would ever happen. My son is now in high school (10th grade to be exact) and my youngest daughter is in 8th grade with honors! What more could I ask for? I have been blessed. Truly.

I get to take a lovely vacation every year and spend time with my family every day. I am thankful for the time that I have been given.

My remission is about over, my muscles have decided that they are tired and weak again. I have a hard time swallowing my food most of the time so I have to eat with a lot of liquids. I look funny swishing my drinks in my mouth like it is mouthwash all of the time, but hey, my food gets stuck! I have been dealing with mouth ulcers a lot lately, so that has stopped a lot of solids.

You would think I would be losing weight, but no way! It is almost the opposite! I can't seem to drop a pound! But I am sure there is no muscle underneath all of that fat, and the pain whenever someone touches me - AHH! My kids don't seem to understand that there is a major difference between them and me. I hear them say, "That doesn't hurt me, Mom, how can you say that hurts?" How does one explain the pain that you feel? My husband doesn't even understand. I think that hurts the worse sometimes. Oh, well, what to do.

I am still in shock that it has been six years! Wow! I didn't think I would make it, and I know that my doctor didn't think so either as he told me once I hit remission that he didn't think I would make it! He was pleased!

~ Update 08-03-09 ~

Well, I made it through the winter, but barely. I went into the hospital with chest pains and trouble breathing. The hospital that I went to didn't have a clue about scleroderma and therefore basically dismissed me after doing a number of tests and sent me home after three days. I had pneumonia! My rheumatologist almost died himself when he got the reports! I will always have the chest pains to some extent and I still have trouble breathing now as well.

My skin is now thickening and my joints are bad to the point were they hurt when I stand. The good thing is we just took a great family vacation, you know, one of those once in a lifetime vacations. How can you tell the family that this might have been the last one?

If I get sick this winter, I don't think I will make it. I am too tired any more to even try. I have made my lists and I am okay. There seems to be a point in this where you know.

~ Update 04-05-2010 ~

Hello, all! Well, it is spring and I made it! And now I am smiling! I am happy! I got through this horrible winter unscathed ~ can you believe it? I truly didn't think that I would.

My attitude completely changes in the spring. Life begins again for me. True, my allergies take over like none other, but hey, that means I am alive! And my kids ~ well they are teenagers, are hating life with mom. They say that I am embarrassing! Haha, welcome to my world! And I love it! Who knows how long it will last, so lets live it up. There are things that I can still have fun doing and I will.

My son is going to graduate high school next spring, my daughter is in college and my youngest is now racing steeplechase horses! I didn't even think that I would even think one day that I would see my oldest graduate from high school! Can you believe it? That was, hmm, about six years ago? It does seem like an eternity ago. At times it was, but at times it was only yesterday.

I still have medical issues, but I am feeling so good that I can brush them aside. My main worry right now is how to lose weight ~ ugh, I have always had that issue and right now, I am happy with my life, really happy. So even that is a back burner issue.

Thank you to all who thought of me. I know you are there. Just remember that it is spring, and hope and Life springs eternal.

~ Update 11-09-2010 ~

Well, I seem to be in this for the long haul! For that I am happy. And I am getting happier with my life. I am now separated from my husband and that is a good thing actually. It is funny, because now he is positive that he swears he has been to the doctors office with me at least twice, but I only remember once.

As far as losing weight, I recently had a hysterectomy. That went well, since the doctor was hand in hand with my rheumatologist. I have found that is the best way to do things. As a matter of fact, I had him listed as my general practioner. Because I have rheumatiod arthitis as well, I am finding that the best way to lose weight is to walk. Short bits of strong walking for me is good, I can't do the in-class aerobics or anything else of the sort.

It is hard for others to understand. I have some terrific friends who have other autoimmune diseases, such as multiple sclerosis (MS), so they truly understand where I am at. We tend to commiserate alot of times, and that is where my husband didn't. In this type of lifestyle, and yes, it becomes a lifestyle, you need to try to understand how a person with an autoimmune disease has to change their life. Their food has to change, their sleep has to change, their life has to change. It is hard for both when that hasn't happened. I am still here and I am still very much alive! My life is going strong!

To Contact the Author

Email: [email protected]
Story posted 9-19-02
Story updated 12-7-02
Story update posted 1-2-02
Email comment 7-13-03
Story edited 7-13-03 SLE
Story edited 10-24-07 JTD
Story posted 10-26-07 SLE
Story update edited 09-10-08 JTD
Story update posted 10-03-08 SLE
Story update edited 08-03-09 JTD
Story update posted 08-03-09 SLE
Story update edited 04-06-10 JTD
Story update posted 04-07-10 SLE
Photo edited 11-19-10 SLE
Story update posted 11-19-10 SLE
Kristen photo added 04-07-10

Story Editor: Judith Devlin
Acid Reflux
Antinuclear Antibodies (ANA)
Clawed Hands (Sclerodactyly)
CREST Scleroderma
Difficult Diagnosis
Diffuse Scleroderma
Scleroderma Specialists
Gastrointestinal Involvement

Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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