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How do you adjust to your diagnosis?

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#1 hippychik



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Posted 22 May 2009 - 11:44 AM

I have been having the sensation of burning in my thumbs for a few months and the doctor did a lot of blood tests. When he told me I have scleroderma I did not know anything about it and he gave very little info. I guess he is waiting for the rest of all the bloodwork results. I have been researching it on the internet and it terrifies me. I am a kindergarten teacher and just got married less than a year ago. Is scleroderma always bad for everyone?? I am freaking out. I tried to discuss my fear with my husband and he cried and told me he doesn't want to discuss it EVER. I have told my siblings and mom and have had really no response at all from them- as if I said I have the flu... There is no support group near me, I checked. How do you deal with all of the emotions going through your head??

#2 jillatk


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Posted 22 May 2009 - 11:56 AM

Welcome to the forum. You will find tons of support here and lots of information that will be helpful to you. I am recently diagnosed with SSc as well and have been through a similar emotional shock. It is normal. The good news this is a very individualized disease and it really runs the gamut how severe it will be for you. The thing you have to know is that it is very test and doctor intensive at first while they are checking all systems and finding what drugs you will need to manage the symptoms. My best advice is to find a rheumatologist that specializes in treating SSc. Take your time about reading too much. just do a little at a time. I am sure you will get lots of responses from folks on the forum and lots of support. For right now just relax and take in a little at a time. For most folks it is a pretty slow moving disease, so enjoy your life as much as you can for as long as you can.


#3 jefa


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Posted 22 May 2009 - 12:15 PM

Hello, Hippychik.

Welcome to the ISN Sclero Forums. I am sorry to hear about your recent diagnosis, but believe me things will settle down for you after the initial shock. There aren't many of us who haven't been through the same sort of thing. It may be hard, but try not to panic. Scleroderma can play out differently for each person and there is no reason you can't continue to have a reasonably normal and long life. Relax a bit and wait for things to unfold with your doctor. It is good if you can see one of the scleroderma experts on this list by state.

One of our best pages to read for a newly diagnosed patient is our Emotional Adjustment and Scleroderma page, in particular the section on Coping with Scleroderma. While you are figuring things out, feel free to ask any questions that come to you. You will find we are a great support group. Everyone here will listen and understand and be ready to share information and lots of hugs.
Warm wishes,

Carrie Maddoux
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#4 Sheryl


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Posted 22 May 2009 - 02:25 PM

hippychik, many of us were told at the beginning that we would only live about 5 years with this disease. Being told that really threw me for a loop. Because I had no intentions of letting that happen to me if I could find ways to prevent it. I started learning from others. Many people here on this forum have had Scleroderma in some for or another for 15 or more years. A few have had it around 20 years. Because this disease is so new and different for everyone doctors really shouldn't give any type of time lines during the first year of following each of our diseases. I am one of the several here in the forum that had many initial symptoms then some of them have come to a screeching halt. I feel great most of the time. I still exercise daily and play tennis several days a week. So as an educator read and learn about this disease and find specialists in the fields that you start having problems with. Knowledge is our armor.

Welcome to our forum. You will make many new friends here that can help you deal with issues as they arise. Sometimes parents don't know how to react to our news. They don't expect to hear that you have something that you may not be able to recover from or something that could take your life before theirs. They also can only help you when and if you ask or need their help. Friends are the same way. If you need them they are there for you but until they see that you need them or you ask for their help they stand back and watch because they don't know what to do and maybe you are giving signals that you can handle things on your own. Everyone is learning with this illness. Be patient with those that don't understand what may or may not happen to you. Stay emotionally strong and live each day as a gift and be happy with that day.
Strength and Warmth,

Sheryl Doom
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#5 CraigR


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Posted 22 May 2009 - 03:12 PM

I agree with the others that you should not get too carried away with some of the things you can read about. This is a disease that seems to effect many people differently. I was diagnosed with "CREST" (slow-onset or limited scleroderma, but still systemic) 32 years ago. There is a woman in our local support group that was diagnosed in 1962 and recently celebrated her 90th birthday.

It's very important that you find a good rheumatologist with a good background in this disease. This website has listings of various sclero experts. Many doctors are ill-informed about this disease.

Best of Luck,


#6 Jeannie McClelland

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Posted 22 May 2009 - 06:07 PM

Hi Hippychik,

Welcome to the Forum! If I could invent one 'fantastical' thing, it would be that everyone diagnosed with any form of scleroderma would know about the International Scleroderma Network before they got the diagnosis. :lol:

To answer your first question: NO! Scleroderma is NOT always bad for everyone.

It's so scary to be told you have an illness that is generally portrayed as being very serious. As the others have already mentioned, everybody seems to be affected differently and it's not always awful. The first year or two seem to be the hardest from an emotional standpoint until you and your doctor have an idea of how things are going to go for you.

A positive attitude, a sense of humor, and a healthy dose of our wonderful ISN hugs will help you along. (We're prone to hugging, if you haven't already noticed.) You'll make lots of new and understanding friends, can vent anytime of the day or night, and ask almost any question and get an opinion from a Forum member's personal experience or directed to an article from reliable medical sources.

I noticed you haven't had a hug yet, so I'm sending you a big one and my warmest wishes.
Jeannie McClelland
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#7 Snowbird


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Posted 23 May 2009 - 12:26 AM

Hi Hippychik

Well, you've gotten excellent advice as I knew you would from this forum. Key is a knowledgeable specialist in scleroderma to help manage any symptoms that may arise (if they do)... and I would strongly suggest to stay off the internet... did that, wouldn't do it again. Stick here and you will get factual and emotional support. Hope you keep us updated on your test results.
Sending good wishes your way!

#8 Amanda Thorpe

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Posted 23 May 2009 - 02:27 AM

Hello Hippychick

You've had great advice already and I totally agree with the use of humour as part of your coping strategy and I do think it's worthwhile to sit down on your own and actually think out what you can do to help yourself adjust.

When it comes to doctor appointments think about taking someone with you, writing out any questions before you see the doctor and remember to ask "why?" at the appointment because the minute you're out the door you'll wish you had. It's not always easy to do but it helps if we're our own advocates when dealing with the medical profession, doctors do their bit and we need to do ours.

If you want to know anything else about scleroderma do use this site. I did the whole trawling the internet thing and my oh my I don't have and probably will never have half the things I read about!

I'm sorry your husband didn't feel able to discuss your concerns with you, perhaps he may consider getting some support for himself? When my life changed thanks to diffuse systemic sclerosis so did my husband's.

Please keep us posted and take care.
Amanda Thorpe
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#9 Peggy


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Posted 23 May 2009 - 06:06 AM

Welcome to the forum. We all know how you feel as when I was told I couldn't believe it. Since then I have learned so much.

The first thing I learned is that YOU have to be your own advocate. What I mean is that if you have a hurt or a question you need to push to have it taken care of and answered. No one but you can direct your path in how you deal with and treat your disease. It took me a year of going from doctor to doctor to finally find out what was wrong. I went from hearing that maybe I had Lou Gehrig's; no it's MS; no it's Post-Polio; and alot of them that looked at me like there was nothing wrong. I knew my own body and knew something was really wrong and I finally got in front of a wonderful neurologist who was treating my numb hands and feet and wasn't happy with the "pieces of the puzzle" that didn't make sense. I owe him so much for finally figuring out what was wrong but if I hadn't stayed dilligent and fighting from doctor to doctor to find out what was wrong with me I have no idea where I'd be.

The second thing is to deal with doctors who SPECIALIZE and KNOW scleroderma. It's a rare disease and you need to deal with medical professionals who know what this disease is about, what it can do, and how best to treat it.

The third thing is to get ready to deal with a lot of medical apppointments depending on your particular sclero. I have a pulmonolgist who deals with my lung issues; a neurologist who deals with peripheral neuropathy; an oncologist who deals with a protein marker that indicates lymphoma will develop and he's watching for it; a great rheumatologist who treats my sclero, Sjogren's, Raynaud's and polymyositis; a local general doctor who will be kept up to date but can deal with the day to day medication needs but knows of your diseases; a cardiologist who watches my heart. I have 6 different autoimmune diseases since I was diagnosed in August of 2007. It's now almost 2 years since I have had this disease and it's ever-changing. It flares and then you feel okay. I have terrible muscle pain and fatigue and reflux issues.

The fourth thing is stay on the boards and forums so you stay connected with other people who have this disease as they are the ones who will know EXACTLY how you feel. It seems like people who have it know what you are feeling and can offer such wonderful advice, caring, knowledge, and insight that it really assures you and relieves you in a lot of ways. You will make some good friends who will always be there for you.

This disease is rare and it also makes a lot of us look "normal". So when you're sick no one really knows it because it's so well hid. I am in constant pain and have terrible fatigue but yet I always get the "you look so good" comments. You have to get used to it and realize that people have no idea what we go through.

Stay informed and as positive as you can. This disease really loves stress as stress really feeds it and makes it so much worse. I had just gone through my Mom's dying, which took 3 weeks of terrible agonizing suffering, and that's when this disease really roared its ugly head.

Sorry to go on so but I so know what you are feeling as I've been there, as we all have. We are all here for you and if you have any questions feel free to private message me.

Please keep us updated on how you are doing.

Warm hugs,


#10 Cheerful Carole

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Posted 24 May 2009 - 02:54 AM

Yes, I have found that everyone says how well I look. When they ask me what scleroderma is I am never sure how to explain it so that people understand. I just say it is something to do with my immune system and they say 'Oh'. Fortunately I have an understanding husband and a son in the medical profession (even he had to read up on it !!)


#11 MaryFanPhilly


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Posted 24 May 2009 - 06:03 AM

Hi Hippychick,

The best thing you could do for yourself is to stay plugged in here.... the support, advice and unconditional love are invaluable. And, listen to your body.

It's hard to find support out in a world where few people know and understand what scleroderma is and just how we are affected. I usually tell people I have a form of rheumatoid arthritis, because that's often the closest they can come to understand. I can't say that I would have understood completely if someone I loved had been diagnosed. The scope of symptoms can be staggering, and some days you wake up and wonder what's waiting for you. Or you wake up in the night with awful reflux (as happens to all of us, usually because we did something we should have known better than to do! lol) or with joint pain from overdoing it the day before.

I, too, was absolutely terrified, especially since my symptoms came on like gangbusters and I felt that if I continued to deteriorate at that rate, I wouldn't be around long. There was a support group close to my home but for a whole year I was too afraid to go, too afraid to see what might happen to me. Eventually I did go, and was glad I did, and met many people who live and survive and deal, which is what I had to do too. Not that it has been easy, and some things are harder to deal with than others. All of us have been where you are.

Fortunately, my progress eventually slowed. Now it's liveable, but with modifications in my life, as we all have with any chronic illness. I have had SSD since early 2005 and I'm far better than I was then, largely thanks to an entire army of smart, diligent doctors. I say that each of my body parts has its own doctor and that my insides are better explored than the Amazon.

Take each day as it comes and please, ask for help when you need it either from us or your family. They will get used to it. It has its advantages sometimes, too, as I just had my two sons clean my entire house, bathroom included, because I no longer can. But that's ok. They're great house cleaners now.

The people who love me, love me because of who I am and not what I do. I'll bet the people in your life feel exactly the same way. Keep us in the loop and remember you have a soft place to fall right here!

All the best, Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#12 Eos


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Posted 26 May 2009 - 01:02 PM

sorry to hear about your diagnosis. Hope you are feeling better!
I am newly diagnosed myself (dec 2008), and I agree the fear or the unknown ticking time bomb in you tends to get you down alot. I was very upset for a while (and sometimes still am), until my best friend told me the following: Scleroderma can't hurt steel. You may rust and need some oiling, but your inside needs to be strong. She is right, .... we only have this one life and we cannot allow a disease to bring us down all that much. Enjoy every day, every moment! Try to be the person you want to be and do not push things off to later... because there may not be a ' later '. People who are not supportive, avoid them. They are not worth aggravation, conflict and hurt. You have to make the best out of your life... don't waste it with fear regarding something you cannot control.
keep your head up!

#13 ozzy69


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Posted 27 May 2009 - 03:40 AM

Hi Hippychik,

Welcome! I am sorry to hear about your diagnosis but happy you found us. Everyone is great and they offer great support! You have already been given great advice. I think it a normal reaction for those that love us not to be great at talking about Sclero. It does get easier as time passes. I have three boys ages 16,18,20, and they didn't mention it much to me. At first I got offended but later I realized that is how they cope with it. My youngest son once said to me, " Now you know what is wrong with you does not mean you have to start acting sick". At first it hurt my feelings. Later I figured out what he meant. I have always been a strong willed person. After I was diagnosed, I was so upset and just gave in to my emotions and stop doing things that I used to enjoy. After he said that to me, I took his advice. I went back to being me, but I do know my limits. I do lots of research and keep a positive outlook. It has been almost a year since my diagnosis and mentally I am much better.

Many Hugs,

#14 Kathy D

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Posted 29 May 2009 - 11:49 AM

Hi Hippichick,

Nice to see you here but also sorry you were diagnosed. This is a great board :)

Diffuse Scleroderma Diagnosed March 2009