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My battle with scleroderma


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#1 razz

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Posted 25 June 2008 - 09:07 PM

In 1998 I was diagnosed with scleroderma. I was 37 years old, a single parent raising two young daughters ages 12 and 10. I experienced my first symptoms in the winter where my fingers would go numb and turn a pale color. Gradually, over the next few months, my fingers began to swell and it was very painful. I got diagnosed by a rheumatologist who knew immediately I had scleroderma. At the time I still looked normal, except for my swollen fingers and the burning sensation in my feet.

I had an aggressive systemic form of scleroderma. Within six months I started losing weight at a rapid pace and became extremely fatigued. I developed breathing problems and was in constant pain. The rheumatologist I saw prescribed pain medication and D-penicillimine to slow down the symptoms.

My health continued to worsen. From 145 pounds, my weight dropped down to 85 pounds. My skin tightened and developed a shine, especially from my chin down to my chest. I couldn't bend my knees or my arms. My skin color darkened and my fingers were starting to curl. Strange marks developed on my face, under my eyes and on my forehead. My mouth got smaller and tighter and I could barely open it. Whenever I ate food, it would sit in my throat and I had to drink liquids to help the food go down. I also developed acid reflux.

Even though I felt depressed I put on a brave front for my girls. After trying numerous treatments, I was accepted into the stem cell transplant study in Seattle, WA in April of 2000. This was one of two stem cell transplant studies for scleroderma being conducted in the U.S. The other one was in Connecticut. I was a pioneer in a new arena. My own stem cells were used (called "autologous"). I was in the hospital for 3 weeks during the whole process and carefully monitored for any signs of infections, fevers or other potential risks. I went through it with no major problems.

It's been 8 years and I've experienced many improvements. All my finger ulcers healed, my skin score test improved from a 25 to a 2-5. I am more flexible, my energy level increased and my pulmonary function tests show a 25% improvement, from a 60 to 85. Some things did not get better like my fingers remain bent. My mouth is still small. I can't fully bend my knees. I have occasional acid reflux and battle low weight. But I can live with these things. I am very lucky to be alive and I am grateful to the doctors at the Fred Hutchinson Cancer Research Center in Seattle.

I want the world to know about scleroderma and the need to research its cause and find a cure. There is hope. Keep looking for the right doctors and medications until you find what works for you.

I have to turn in now. I didn't realize how late it is!

Razz :)
Live well, Laugh often, Love much

#2 Karenlee

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Posted 26 June 2008 - 01:13 AM

Razz,

Thank you for sharing your story. It's fascinating how different yet similar everyones experiences are. I'm thrilled that you didn't give up until you found a doctor that you felt was your advocate and on your side. It saddens me how many stories I've read about doctors blowing off symtoms or just being plain uninformed about the disease.

You seem like a fighter which is a great attribute. Even in the face of this baffling disease. An inspiration to me.

Sincerely,
Karen

#3 nan

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Posted 26 June 2008 - 02:51 AM

Razz,
WOW! You have had quite a journey! You are definitely a fighter! Thanks for sharing your story with us.
Nan

#4 Margaret

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Posted 26 June 2008 - 04:12 AM

Razz ,

Thank you for sharing your struggles and life with Sclero. I'm so glad to see that you have a rainbow at the end!!!

Take care, Everyone.
Margaret

#5 Peggy

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Posted 26 June 2008 - 04:34 AM

Razz:

Thanks for sharing your story. I was so intrigued by your stem cell transplant as I just asked my rheumatologist doctor on Monday if I was a candidate for it and she didn't think so. I'm so glad it turned things around for you. I would be anxious to read your book someday on your journey with this disease.

Warm hugs,

Peggy

#6 Sweet

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Posted 26 June 2008 - 06:04 AM

Razz,



Thanks for sharing your story. You've certainly battled your way through this. It helps to know other peoples circumstances, so thanks.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 razz

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Posted 26 June 2008 - 06:22 AM

Thanks for your comments Margaret, Peggy, Nan and Karenlee,

There is a rainbow after so much perseverance!

The qualifications for consideration for the SCT back then were: Have a diagnosis of systemic SD (w/internal involvement) 2 years or less, 45 years of age or less, have tried other treatments and a diagnosis from a rheumatologist. Now the requirements are not as stringent, I.e., it isn't necessary to have tried other medications or treatments and candidates are accepted withearly-stage systemic SD. It's worth looking into! Hopefully withtime, the costs will come down and make it a more affordable treatment.

I hope I can offer my support to anyone out there to hang in there. Keep trying different treatment until something works. We are all a courageous group to have experienced this disease. I remind myself that I'm not so bad off and do things to boost my moral. But nothing beats talking to other people!


Razz
Live well, Laugh often, Love much

#8 Sam

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Posted 26 June 2008 - 06:28 AM

Razz thanks for sharing your story. I hope you will some good news about your book. Take care,SAm
Sam

#9 debonair susie

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Posted 26 June 2008 - 07:23 AM

razzberry,

It's wonderful that fate brought you and your dr together, because that's how I view it.

I am glad that your journey has turned out as well as it has... improvement along the way.

Thanks for sharing with us!

Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#10 GocartMoz

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Posted 26 June 2008 - 09:45 AM

Hi Razz,

Thanks for chiming in with your story. Your story is truly inspirational. I too had a SCT in March of 2007 to fight this disease. I was diagnosed in mid 2006 and had rapidly progressing diffuse Scleroderma. My skin score went from a 27, upon receiving my official diagnosis, into the 40's in 6 months. At my last testing in February, it was way down, well below the score given me at my official diagnosis. I went to my 1 year survivor's reunion at Duke University just last week. Unfortunately, I was the only Scleroderma patient there, as most were cancer survivors. Nonetheless, it was wonderful to see the results of the tremendous research being done with stem cells. Aside from dealing with some lingering gastro issues and weakness, life has really turned around for me this past year. Like you, I also had trouble maintaining weight. I have put some weight back on since being released from the hospital, but I probably have lost a net 80 to 90 pounds during this process. The good news is I needed to lose it. It does me good to read about such inspirational stories. Congratulations on battling this disease and winning.

#11 Michelle2

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Posted 26 June 2008 - 09:49 AM

That's Razz for sharing your story with all of us. You are a brave and wonderful fighter and someone to look up too. Thank you for giving so many of us the hope that we all need.

Your family is very blessed to have you to love.
Take care and stay warm,

Michelle

#12 razz

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Posted 26 June 2008 - 10:30 AM

Hi Sam! I thought I recognized a familiar face! I'm a little nervous about releasing the book. I just want it to be good! If anything I know I speak from the heart. I mentioned to my rheumatologist. a while back about how I was writing this book and how I didn't think anyone would be interested or would want to read it. And, he said "I would." I thought "Wow, I better hurry up and finish it." He even edited my first draft, marked it up like crazy. When I see my proof copy, hopefully tomorrow, I'll be pressing the send button!

It's not easy revealing personal info and sometimes I just want to hibernate. But I get over that. If I can stick it out and fight this disease, I hope others can too. And if I can inspire someone, then I feel good about that!

Debonair Susie... Fate does have a way of bringing people together!

Kuntrybumzz...I get my inspiration from you all!

GocartMoz....A few months ago, I read a thread a while back where you talked about having had a stem cell transplant similar to what I had and I wanted to see how you were doing. (I hadn't joined the forum yet.) I'm glad to hear you're doing so much better! That's fantastic!

P.S. I also needed to lose some weight.


Razz ;)
Live well, Laugh often, Love much

#13 truman

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Posted 26 June 2008 - 10:50 AM

Razz:

It's apparent you do not have low self esteem. No body and nothing was gonna take your body, spirit and soul away. I feel the same and am fighting as I would fight for my kids, rights and faith. You are an inspiration. Writing your book will spread the word to all those who don't know. I'm rooting for you Razz. Get out there and let them know and if you need back up, we're right by your side friend.
Tru

It is what it is...........

#14 Guest_Sadie_*

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Posted 26 June 2008 - 01:09 PM

Razz, Thank you for sharing with us! I had forgotten that you took DePencillmine. I was on that my first few years of my illness. Like Sam said, I hope you get some good news soon on your book!
Suzi

#15 barefut

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Posted 26 June 2008 - 04:40 PM

Razz and Gocart ~

I sit here with tears reading about your experiences. I am so happy for both of you and for your families that they will have you around for a long time to come!

Razz, I can't wait to read your book. Dave, get busy on yours ;) Kidding - didn't your wife keep a blog journal of your experience?

You two are inspirational! Can't wait to hear from Peanut.

Take Care All,

#16 Buttons

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Posted 26 June 2008 - 08:55 PM

Hi Razz

Thank you for sharing your story, after all you have gone through & still have a positive attitude is amazing. Your book will be an inspiration for people who are suffering from SSc and also help others to understand more about this little known disease.

#17 susie54

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Posted 27 June 2008 - 07:23 AM

Thankyou Razberry for such an inspiring story of courage and strength . You took everything you had to fight a horrible disease. You are showing others how to fight this disease and fight back. I applaud you. I hope things only get better for you. Susie54

#18 GocartMoz

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Posted 27 June 2008 - 01:23 PM

Barefut,

It is funny you mention that. My wife did keep a blog called The Scary Derma Chronicles and just last week she began putting some of her entries together to do a book. I hope she goes through with it because she is an excellent writer. We will see what happens.

#19 razz

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Posted 27 June 2008 - 05:20 PM

Gocartmoz,

I already like the title, that's a good play on words of SD. The more people who write about SD, the better. This way scleroderma would become recognizable and maybe there would be more interest from researchers to find the cure. Either way I think writing your journal is a great idea!

Susie54,

It did take every bit of energy to fight this disease and combined w/ the fatigue it left me like a deflated balloon. I'm semi-inflated now.

Jensue,

I did go through a mean and nasty phase, but I knew it was the SD making me feel that way. I'm feeling more like myself now. Thank goodness. That Dr. Jekyll and Mr. Hyde phase is yucky! :blink:

Barefut,

Thanks for your kind words. I wish everyone could experience a dramatic improvement. That's also what I am hoping for. Maybe someone will be inspired enough to take on this cause.

Andyko,

You're so right, it's not easy writing about your personal life. I chose to write it like I'm talking to a friend.

Sadie,

I can't wait to see a final copy! I went to the post office today to see if it came in yet. So far nothing! I have to make sure the front and back covers look good.

Tru,

I think we are very much alike. Over the years I've learned my mind and spirit are the most important things. Attitude plays a huge factor in healing. Having SD taught me that my physical appearance might change but I am still the same person! Thanks for your support Tru! :)



Razz
Live well, Laugh often, Love much