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Newly Diagnosed and Scared


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#1 martinisweetie7

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Posted 31 December 2010 - 04:28 AM

Hello,

This is my first post to this forum. My therapist recommended I sign up for this. Hopefully, I can find some comfort here.

I've recently been diagnosed with scleroderma. I guess you can say this is all new to me, and I am scared to say the least.

I've spent a good portion of my late teen/early 20 years suffering from diabetes. I always had these really uncommon symptoms happening to me. Difficulty swallowing, extreme intolerance to cold, pain in my joints (especially hands), severe heartburn and nausea, etc. Then as I got past 25, my hands and feet started to turn a light blue color all the time. I always just thought diabetics had poor circulation, and chalked it up to that. I never would have found out I had this condition until one day I went to a doctor to get a baseline health check to see if I could get pregnant. Since I was diabetic, I went to a high risk specialist who took 19 tubes of blood to check for all kinds of genetic conditions and what not. So, on a holiday evening of 2009, I got a call saying I had scleroderma, and to see a rheumatologist asap. So ever since then, it's kinda been downhill for me.

I get these horrible headaches all the time. I am so cold, and in so much pain. My doctors have me on so much medication it makes my head spin. I'm 27 years old, and I seem to be falling apart. I can't even function like I used to because I'm in so much pain. It gets really overwhelming for me. I'm trying to remain positive and keep my spirits up, but I have to admit this is really hard. Nobody in my family understands what I'm going through, or how I feel. So I'm hoping to find some solace here with people who may be going though the same thing I am..

Thank you for listening to me "rant" lol. It's nice to know I'm not alone out there.

~ J

#2 Shelley Ensz

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Posted 31 December 2010 - 05:22 AM

Hi J,

Welcome to Sclero Forums! I'm sorry you have scleroderma, but you'll see that around here you have lots of great company.

It's very seldom that family members or friends understand much, if anything, about scleroderma. That is upsetting to a lot of us in the beginning, until we accept that it's not just us and our sickness but it's just plain the way it is and millions of folks with all sorts of conditions encounter the same phenomenon. However, it's even more so for scleroderma because hardly anyone has ever heard of it. I'm sure you've figured that out by now though.

Anyway, I just want to welcome you and send lots of warm hugs your way in hopes that 2011 will be a better year for you, all the way around, with the added support of all your new friends at sclero.org!

:emoticon-hug:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Sweet

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Posted 31 December 2010 - 05:34 AM

Hi J,

Welcome to our family. I'm so very glad you've joined. I know how overwhelming all of this can be. We've each gone through it in our own way, so we certainly understand. Here is a link to Emotional Adjustment. I hope it helps you. Hang in there my friend. :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Sweet

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Posted 31 December 2010 - 05:37 AM

Hi J,

One more thing - I wanted to give you The Spoon Theory, that may be helpful in explaining to your family and friends, as to how a day in your life is. Hope this helps. I pass it out on a regular basis.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Amanda Thorpe

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Posted 31 December 2010 - 06:02 AM

Hello J

Welcome to the forums, if you have scleroderma it's the best place to be.

In the beginning...which is where you are at...it's all a bit overwhelming, bizarre, scary and well weird 'n' wacky. Post your questions and struggles here and you will hear from people living with the same questions and struggles as you which is a good thing because as Shelley has already said and you no doubt know, no one has ever heard of scleroderma! :emoticon-hug:

Take care and keep posting.
Amanda Thorpe
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#6 debonair susie

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Posted 31 December 2010 - 06:32 AM

Hi J,

I am SO HAPPY your therapist recommended this site to you! Furthermore, I'm glad you took the suggestions seriously, as we are FAMILY here, wherein we share something that others may not...that would be knowledge/experience, with regard to what you may be experiencing.
We share, support and can empathize with what you may also be feeling. For one, I can empathize with what you are now feeling, in that I also felt scared,, as well as alone in this. However, you already are one up on where I was then, in that I didn't have a computer, so I was living with the diagnoses I had received, without the knowledge!

The doctor(s) you are seeing are really on top of things, especially since you are also dealing with diabetes! Neuropathy is a biggie, oftentimes, where diabetes is concerned. Fortunately, those of you who DO have it, know to be very careful, when it comes to sores that are slow to heal, etc.

It truly hurts my heart when I see those of you being diagnosed at such a young age. However, please don't dispair, as there are SO many supportive people here and I just KNOW you will feel better, knowing there are those of us who are able to relate to what you are going through.

If you are having such pain and yet you are receiving medication to help with your pain, it's possible your medication(s) need to be reviewed.
I realize you feel overwhelmed and with the pain, it compounds everything, so coping skills wane.

As Shelley mentioned, those around us really DO have a difficult time understanding, which is why it it SO wonderful you were directed to this awesome place!
Just please post often, read other's posts and puruse the medidal information available here, as we have a saying here on the forum: Knowledge is Power!

Again, I cannot tell you how very happy you are here and that you posted. You may FEEL alone in this, but you aren't, believe me, J. We are here for you and I am sending lots of :emoticon-hug: s to use liberally!
Special Hugs,

Susie Kraft
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#7 Joelf

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Posted 31 December 2010 - 07:11 AM

Hi J

A very warm welcome to these friendly and informative forums to you!!

Please don't feel worried and scared; now you've joined us you are no longer alone! :) We all understand how upsetting and overwhelming it can be to have this bizarre disease and as Shelley said unfortunately family and friends can find it very hard to understand. None of my friends had ever heard of Scleroderma before I bored them witless explained all about it to them. I found that it helped me a great deal to find out everything I could about this weird disease......as Susie said Knowledge is Power!!

Thankfully it does seem as if your diabetic high risk specialist was on the ball when it came to diagnosing you and referring you to a rheumatologist. We do have a list of Scleroderma specialists here should you wish to consult one; unfortunately many rheumatologists don't fully understand this complex disease and it is beneficial to be treated by a Sclero expert.

Now that you have found us do please post often and there will always be an understanding ear to listen to you or a pair of broad shoulders for you to cry on, should you need it!!

Here's a :emoticon-hug: to be going on with.

Jo Frowde
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#8 ladyhawke

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Posted 31 December 2010 - 07:37 AM

Welcome Home.....at least that is sort of how I felt when I first found this group a few years ago. I'm not too often on here now, but it's a place I can come to anytime and find someone who understands.

I can't add anything that hasn't already been said here, just wanted to welcome you as well. We have all been where you are now. There's so much information, love & understanding here, it's just simply a good place to be.

Cheers - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#9 martinisweetie7

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Posted 31 December 2010 - 09:40 AM

Thank you all so much for the kind words and support.

I really do feel a little better already.

~ J

#10 judyt

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Posted 31 December 2010 - 10:54 AM

Hello J,
Welcome to the forum. I can well remember being 27 and feeling a lot like you do now. I know that my life with Scleroderma started on a November day in 1966!! with a diabolical headache. It took until 2003 to get any sort of diagnosis so I lived through my 20s 30s and 40s wondering what on earth was wrong with me. I lived with overwhelming fatigue, weekly headaches, cold hands and feet, reflux and more intestinal abnormalities than I care to count, as well as wierd fingers and finger nails, until I had a crisis in 2003 and was hospitalised and diagnosed with CREST.

The only thing I have never had is pain in my joints, but for many years the pain in my head made up for it!!

What I do know from experience is that in many cases there are medications which can help, and when one doesn't work there will probably be another one to try. There have been years when I saw my primary care doctor every month or more often, and other years when we become strangers. I live in New Zealand and we don't hve the luxury of Sclero Specialists or Experts so we I rely on my general practitioner and a general Rheumatologist.

Right now at almost 67 years of age I feel that my disease is at its lowest ebb. Most things are well under control and as long as I have plenty (and I do mean PLENTY) of rest I am doing OK.

So my message to you is don't panic (been there, done that) listen to your doctors (when they seem to be saying sensible things) don't be afraid to get another opinion when things aren't going well.

Maybe, like me, with an early onset you might find that nothing dire or unmanageable crops up. Sometimes I think that those who have a later and more severe onset don't have it as easy.

Bear in mind that I have no medical training - not even a first aid certificate - all I have is a lifetime of personal experience.

Warm hugs and kind thoughts
Judyt

#11 miocean

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Posted 31 December 2010 - 02:01 PM

J,

I'm interested in what kind of therapist told you about ISN and how he/she found out about the site...

Everything happened to me so fast, I had no time to be scared. I am so glad you jumped right into the forum, I lurked for a long time. (You lurkers out there, take note.) This is THE BEST PLACE for support and information. None of us are medical experts, but we deal with the disease on a daily basis and, in many cases, have more insight into it than some of the professionals.

I am in NJ also and, unfortunately, the disease seems to be more common in this area. My mother-in-law had it and so did my best friend's mother. When I tell people I have it, quite often the response is "my _____________________has that, too." :excl:

If you want someone nearby to talk with or anything else you can Private Message me. You do that by clicking on the envelope under my screen name on the left.

I will give you my favorite quote from Amanda on this forum, "there is life after scleroderma." Ask your questions, post your concerns and everyone will try to help you. And in return, you will be helping all of us.

miocean
:bye:

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#12 omaeva

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Posted 03 January 2011 - 09:36 AM

J,
Just wanted to say welcome!
I've experienced similar symptoms as you particularly with the headaches.
Being slightly younger than you it can be frustrating; I definitely recommend reading through the spoon theory.
For me it helped to manage my stress, activity level etc. It definitely lessened the headaches.

-- O

#13 Lynnie

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Posted 03 January 2011 - 12:59 PM

Hi There! Along with everyone's replies, a warm welcome to the sclero family.

We are a pretty unique set of people, with unique issues with this disease, but it binds us together!

Life with scleroderma isn't easy, I'd be lying to you if I said it was, but, a positive attitude,a sense of fun and a laugh at the things that before it were easy to do - I got in a total tangle trying to do up my bra this morning!!! The bra worked but the fingers trying to put it on didn't!! Instead of getting upset,which I could of done, I had to shout for my son to assist! Our refuse men had a laugh, as a 20yr old lad isn't exactly quietly spoken...shouting "have you got your chest in yet mum!!" and as I pulled the blinds back I was getting the thumbs up from the men outside!!! Keep smiling my love, you'll get there in the end ...like the rest of us!
love and hugs
Lynn x

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#14 Sacha

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Posted 04 January 2011 - 10:12 AM

As a mother I want to send you big hugs.

My little girl is only 8 and I fear that one day she will feel alone in this rare illness. She too has to take alot of medications and only manages to go to school part time. 15 months ago she was a normal child but this illness slowly took its hold. All I can say is that as they have started to tweak her meds she has started to show an improvement.

Good luck to you hun and stay strong.

#15 Robyn Sims

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Posted 04 January 2011 - 08:04 PM

Hi J,

Another mother wishes to let you know that being scared is ok. Being scared and alone is not ok.

Welcome to this forum. You have received plenty of advice, but we will all be watching out for your posts and questions. My daughter was your age when diagnosed. She is now 37 and doing fine, although the meds are long term.

The first two years were the worst and the road back was long but life is good for her and time and lots of support does make all the difference.

Warm Hugs :emoticon-hug:
Robyn

#16 martinisweetie7

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Posted 05 January 2011 - 11:52 AM

Thank you all!

I can't even begin to describe how comforting it has been to read all of your kind words.

Thank you for the spoon theory link. I emailed it to a lot of my friends who just don't understand what this is all like.

Some people were asking how my therapist got me to sign up for this. I have to say, when I was diagnosed, I kinda went off the deep end, and I starting going to therapy to help me handle it all. My therapist has gone above and beyond to find resources for me outside of clinical therapy sessions to help me. She did all this research for me and handed me packets of into on this site, the condition, treatments like biofeedback, local support groups etc. She has really done so much to help me come to terms with what has happened to me, and what I'm going through.

Again, thank you all for starting my new year off on the positive note that I really needed.

~ J

#17 enjoytheride

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Posted 05 January 2011 - 05:32 PM

Welcome- you showed up at the right place. If I have a "weirdness" show up, I can ask the question here. If someone else has dealt with it, they will usually provide sane and useful feed back- if not, someone will usually give me a nudge back to the correct side of rationality. I have never had a question be ignored.
I'm one of the people who have had a significant reduction in my symptoms from medication, so please know that there are many things to help out there.
(((hugs)))

#18 debonair susie

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Posted 06 January 2011 - 07:02 AM

Hi J!

Your therapist is AWESOME and please let her know that we also really appreciate her "above and beyond efforts", in order to better help you.

Please give her warm :emoticon-hug: s for us, J!
Special Hugs,

Susie Kraft
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