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#201 Sweet

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Posted 09 September 2007 - 05:03 AM

Hi Maddy and welcome to the sclero forums.

I'm sorry you have CREST, I do as well. If you've been reading here for years, then you know you have access to great information, an amazing support system, and great friends.

Looking forward to reading more of your posts.

Again, welcome.
Warm and gentle hugs,

Pamela
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#202 NC Dreama

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Posted 15 September 2007 - 06:29 AM

Hi Michelle,
I am a newbie to Sclero.org too, but I am already finding lots of information and help. I read in your introduction that you are probably going to be moving to NC. You will love it here. Winters are not too bad, but not like Ca. I can understand your frustration over doctors and diagnoses it took me 3 years to find a doctor in NC and I am still not too sure he is the right one. He does take his time with me and listens, so that is a plus. I, like so many other scleroderma patients read and soak all the information I can get my hands on. Keep on pushing until you are satisfied with your doctor, read and read some more, and never give up.
Regards,
NC Dreama

#203 WestCoast1

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Posted 16 September 2007 - 05:16 PM

HI Marjori,
Thank you for your post. Your strength and your fight for life is an inspiration to all of us. I hope that you are able to chime in here whenever possible.

Hello Maddy,
I am sorry to hear that you have scleroderma. It sounds like you have been through several battles in your life...but in return you have 2 beautiful children. I hope that we can be a great support system for you on your tough days, and share a laugh or two with you on your good ones!

To both of you...welcome.
*WestCoast*

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#204 bowbec

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Posted 13 October 2007 - 11:54 AM

Hey Everyone,
I am 52 years old, have been living with Scleroderma for two and half years now. Summer has been good to me. I am in a good place now. My skin has loosened and I have more energy. Having Gastro problems that we are trying to work out (with laxatives, ha!) Don't know what the winter will hold for me but I plan to give it all I've got and face it with a smile. I am in Tennessee so our winters aren't too bad.
I am still working full time. (31 hours) and plan to as long as I can.
Thanks for your input in advance,
Becky
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#205 jefa

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Posted 14 October 2007 - 09:52 PM

Hi, Becky, and welcome to the ISN Sclero Forums. I am glad you found us and also glad you are "in a good place" now with your illness. I look forward to seeing some of that positive attitude shared on the forums. You should fit right in, as it is a wonderful group.
Warm wishes,
Jefa

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#206 Peggy

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Posted 16 October 2007 - 11:23 AM

Hi Everyone:

My name is Peggy and I'm 48 from Minnesota. I was just diagnosed with systemic scleroderma after a year of doctoring and suffering with trying to find out what was wrong. I started on cyclophosphamide a month ago and I am slowly learning about this disease and I am scared to death. I have had a lot of side effects with the drug in nausea and I am slowly losing my hair. I also have sjogren's and Raynaud's and mixed connective tissue disorder so I suffer with muscle pain throughout my whole body and I deal with so much fatigue. Is this normal with the disease? How about work? I'm having a hard time getting through the day and am worrying if I an normal in what I'm experiencing. My family has been great and all are worried to death. I have a son who just got married and has now been called up to go to Afghanistan in January so he's scared to death on where his Mom will be in her disease while he's gone and what I'll be like when he comes home.

I also recently went to the Mayo Clinic website and needless to say saw for the first time what my hands will look like and was horrified. I have curling in my fingers already and I'm wondering how I will be able to cope when they are totally curled up. Can a person dress themselves; feed themselves, etc.?

I have also lost a great deal of weight and I'm not able to eat at all as everything tastes terrible and also have no appetite.

I'm looking forward to getting as much help and info as possible from this website and I am thrilled that I found it.

Thanks everyone and Bless.

Peggy



#207 Sweet

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Posted 16 October 2007 - 02:35 PM

Hi Peggy,

Welcome to the sclero forums! I am so sorry it's do to your multiple diagnosis. What you are experiencing is very normal for someone with this disease and the others you mentioned. I know it can be overwhelming at first and was for me for several years. Take one day at a time, start sorting through it as you have the energy and beat yourself up over things. Each person reacts differently, but we do have a lot of the same symptoms.

I'd like to start you off with a link about emotional adjustment. I hope that you find it helpful.

Again welcome!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#208 bunny pomar

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Posted 05 November 2007 - 07:54 AM

I am 62 and have had SSc for about 18 years. It started with Raynaud's and the to my esophagus. I had trouble swallowing food. I was put on medication and it was managable until five years ago. Now my whole GI tract is involved. I have had a colostomy because of incontinence, Barrett's Esophagus, and pulmonary fibrosis. Three years ago my stomach became paralyzed and I was put on Hyperal or TPN. All of my nutrition is done IV and don't take anything my mouth. I have a gastroentestinal tube in my stomach to suck out stomach stuff when I become distended and nauseous. I also have hypogammaglobunemia which I get an infusion of IGg every four weeks. Without it I am prone to different blood diseases.

I have had a portocath put in four years ago and have had it replaced five times since because of infection. Ihave had alot problems but I figure I'm still around eventhough I'm pretty usesless because I'm so weak. But I can still hug my grandchildren (13) and watch them play. The worst thing is not eating. I can literally salivate smelling different things. Is anyone else in this position. I haven't come across anyone who can't eat and would like to commiserate with them.

Thanks for listening, sometime I just neet to vent.

#209 Sweet

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Posted 05 November 2007 - 12:28 PM

Hi Bunny!

Welcome to the Sclero Forums. I am so glad that you've joined us. I'm really sorry for the intense involvement you have due to sclero. How much can one person take? You sound like you are staying positive and I have to give you a hand for that. I really look forward to knowing you better.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#210 bunny pomar

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Posted 07 November 2007 - 09:18 AM

Thank you for the reply. I live in Florida and don't know anyone else with this disease. Most people don't understand the intense involvement and because I lly physically look okay, except for being thin and use a cane, they thing I'm not so sick. Fortunately I have a great husband who is so helpful and supportive, I couldn't get along without him. We have 8 children between us. It took them some time to realize how much I have gone down hill. They're use to me doing everything and being very active. They've come around after I was hospitalized several times for weeks at at time. They are a big help now too. The grandkids are so used to seeing me with things stuck in me and different tubes they don't think anything of it, it's just Bubbe.

I'm on reglan, prevecid, amitiza, zofran, allegra, effexor, sandistatin, methotrexate, lipitor, tpn, and cardizem. I also am on arimidex.

#211 jefa

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Posted 07 November 2007 - 10:13 AM

Hi, Bunny, let me add my welcome, too. The ISN Sclero Forums are a great place for information and support. Sounds like from reading your other posts, you have a lot to offer as well. I look forward to getting to know you better.
Warm wishes,
Jefa

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#212 Peggy

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Posted 07 November 2007 - 02:23 PM

Hi. I'm very new to this and I hope I'm doing the posts and replies right.

I'm 48 and have just recently been diagnosed 2 months ago after a year of doctoring. Now that I have the diagnosis that I was so hoping for now the real batle begins. And I mean battle.

I have been started on cyclophosphamide to battle a protein marker that apparently really heightens the possiblity of my getting lymphoma with my having sjogren's and with the sclero. So I don't just get to battle sclero, I have to also battle sjogren's and raynauds/ battle this protein lymphoma marker and all of the symptoms and side effects from the disease and the cyclophosphamide that I'm taking.

Quesiton - I was told the biggest battle is to hold off the sclero getting into my lungs as once it's there there's not much they can do? Is that what others have heard also? I have some lung involvement, but not much and will be tested again in April. I was just wondering what others have heard.

If you know, please feel free to send me a personal email as I haven't gotten this website down pat to know where to find everyone's replies and advice.

Thanks for listening.

Peggy



#213 bunny pomar

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Posted 08 November 2007 - 06:02 AM

thank you Karen, I am on my computer almost every day. It'll be good to hear from you.

Bunny

#214 janey

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Posted 08 November 2007 - 07:01 AM

Peggy,

I'm sorry to read about your diagnosis and all the battles you are fighting. You do however, sound very strong and able to fight back.

I've noticed that you are doing very well in posting and replying, so I'll just address your question about lung involvement. First of all, the cyclophosphamide will probably help to postpone, possibly indefinitely additional lung involvement - but then we never really know. It is used to treat patients once it's developed, so it makes sense, that it could also prolong it. If you lung involvement is pulmonary fibrosis, it is usually not reversible because that is a scarring of internal lung tissue that allows the transfer of oxygen. The trick with fibrosis is to catch it early and prevent it from getting worse. Pulmonary hypertension can be reduced in some patients with some of these medications. I'm on Tracleer (Bosentan) and my PA pressure has dropped from 45 to 30. (I also have a mild fibrosis, but enough for me to require supplemental oxygen when I exercise, run errands and sleep).

We have a couple of links on cyclophosphamide - general information and studies.  I hope this information helps.

Welcome to the ISN family!


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#215 Lady Deb

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Posted 15 November 2007 - 06:14 PM

Hi,

My name is Deb. I was diagnosed spring of 2006. It was really long and drawn out. I has Raynaud's for years. And my doctor said yea that what you have. Then I was getting digital sores on my finger tips every winter which I thought it was the Raynaud's with the hand soap we used at work. So started going to a dermatologist. March 30 2006 I stopped smoking (HURRAY) But three weeks later I was admitted to the hospital with chest pressure. I had sick-sinus syndrome which made my heart rate go below 30 when sleeping. So a the age of 50 I got a pacemaker. When I went back to the dermatologist he put two and two together and sent me to the rheumatologist. After the test I was diagnosed with CREST syndrome. I have the Raynaud's, GERD, hardening of the skin, something with rounding, and tightening of the fingertips. I also have arthritis. Sometimes it becomes to be too much. And I don't think people understand. I work and can take care of myself, thankfully. Has anyone been put on Methotraxate for it?

I will be nice to talk with people who understand. Thanks for this site. rolleyes.gif



#216 Sweet

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Posted 15 November 2007 - 06:32 PM

Hi Deb and welcome!

I'm sorry to hear about your diagnosis, but I'm so glad you've joined us here. Sounds like you've been through a lot my dear!

Really looking forward to knowing you better.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#217 bahaboyga

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Posted 15 November 2007 - 07:09 PM

Hello Everyone,


I kinda skipped ahead of the introductions and posted a few times. A little about my sweetie. She was diagnosed with SS in 1989. She has been through most of the usual symptoms. Symmetric thickening of skin, Finger ulcers, Raynaud's, Bowels and constipation to name a few. Her fingers have curled in ,and she has limited use, She had a stroke from bleeding in the left side of the brain that required Neurosurgery. She is now is fighting depression. She has been on various cocktails of medication for the last few years and seems to be getting a little better.

On Nov 26th we are scheduled to see doctor Furst @ UCLA . He has truly changed our lives. We audio tape our visits to make sure his instructions are followed by our local Doctors.

Best Wishes

Bahaboyga

#218 Kim T

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Posted 18 November 2007 - 12:13 PM

Hi, my name is Kim, I'm 45 and was diagnosed with CREST about 7 years ago. Each year things have gotten a little worse but nothing serious yet.

My thyroid stopped working after the birth of my son, almost 15 years ago. Then my fingers would turn white and get little sores on them. Restless legs took me to the doctor who sent me to a rheumatologist. My ANA and symptoms pointed to CREST. I have no skin involvement which makes it hard to get doctors to understand you feel horrible. I have a lot of muscle pain, especially in my hips.

I've had motility issues in my esophagus for years but have had extreme bloating, belching and gas issues for the past 2 years. It really limits the foods I can eat.

Having a silent disease is a problem because no one thinks you look sick. I have pain, fatigue, stomach issues, insomnia, restless legs, Raynaud's, etc. No one wants to hear you complain and look at you and assume you're either a whiner or it's all in your head. My rheumatologist retired and finding doctor who knows about CREST and it's complications and who is willing to take pain patients in this town is impossible.

Life is good, though. I have a wonderful husband of 23 years. A strong-willed but good son of 14 and 2 adorable whippets, who adore me and who love to snuggle and sleep. Thanks for being here.

#219 jefa

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Posted 20 November 2007 - 03:07 PM

Hi, Kim. I am so glad you found us and hope you find a good new rheumatologist soon. Your positive attitude will stand you in good stead. Love your dogs!
Warm wishes,
Jefa

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#220 Sweet

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Posted 20 November 2007 - 03:38 PM

Hi Kim,

I'm sorry to hear about your diagnosis, but I'm so glad you've joined us here. Sounds like you've been through a lot my dear!

Really looking forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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