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Diagnosed in October 2007, but wasn't prepared


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#1 waterview05

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Posted 25 November 2009 - 10:02 AM

Hello everyone,

My name is Kelly and I'll be 39 in January. I was so happy to find this site and have been reading postings over the last few weeks. Thanks to everyone for being so encouraging. I'll try to make my story as brief as possible.

Some time in 2006 I started experiences what I now know is Raynaud's. I just blew if off saying, "It's cold, so that's why my hands feel this way." I'd suffered with reflux for numerous years as well.

Early 2007 the reflux was out of control, my skin texture and color started to change, I was itchy all the time, my hands and feet were swollen; needless to say, it was a horrible time. I was on the purple pill for reflux and a diuretic for the foot swelling. I went to the ER one weekend because I felt so poorly and they ran every test imaginable. Well, what was unimaginable to me was that I had positive ANA for lupus and scleroderma. That explained everything I was and had been going through for the previous 8 or 9 months. Wow! I was so not prepared, but I guess, who is? I didn't expect to not be able to make a fist with either hand, to not be able to bit into a normal size hamburger or banana or to even open my mouth wide enough to brush my teeth with ease. I couldn't accept that I couldn't go to work and function a full 8-10 hours. After half the day, I was beat. I have gastro issues and have lost 32 lbs. over the last couple months. I love shopping, but it wasn't as fun buying new clothes because I get tired so easily now. I wasn't prepared for sores on my elbows and fingers. I wasn't prepared for my skin to be so tight and constantly itchy. Oh my goodness...and the sharp pains that shoot through my arms. I JUST WASN'T PREPARED! I've been in physical and occupational therapy this year and it is helpful.

I've been on several different meds: Procardia, Plaquenil and Colchicine. I'm still on Plaquenil and Prazosin for the Raynaud's and my rheumatalogist wants me to start either methotrexate or thalidomide. I'm not sure which one...I just wish there was a pill that they knew worked for sure with Scleroderma.

The first year and half I was so optimistic; I would say blindly optimistic. I was one of those people that read about it, but kept saying, "This won't happen to me". Over the last month I've been very emotional as I come to grips with being 38 and my doctor saying I should immediately fill out the disability paperwork. In my mind I still fight it sometimes until I go to put on socks and shoes and need help or I want to take a bath and can't because my partner isn't home (because I need help getting in and out of the tub).

I am hopeful. I know things could be worse and I am so happy that this forum exists. It was amazing to me the first time I signed on and read my story over and over.

Thanks to all for your support,

Kelly

#2 Shelley Ensz

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Posted 25 November 2009 - 11:17 AM

Hi Kelly,

Welcome to Sclero Forums! We're very glad to have you, but sorry it is because you have scleroderma.

Have you had some occupational therapy yet? There they can suggest tips for how to work around things, such as grippers to help put on socks, or suggesting slip-on style shoes. I'm not sure why they call it "occupational" (doesn't that sound like it's preparing you to go back to work?) whereas the focus is really just on finding specific ways to adapt to particular disabilities.

Anyway, with or without occupational therapy, have you discovered any adaptive tools that make things easier for you, yet?
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Amanda Thorpe

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Posted 25 November 2009 - 01:11 PM

Hello Kelly

Welcome to the forum, you are in the right place for all things scleroderma.

I don't think anyone is prepared for the move into the weird 'n' wacky world of scleroderma but here we all are. The beginning bit is always the worst, I've just started my third year with diffuse sclero but I still remember those early days. My emotional setting went from asleep to hysterical with no stop in between but I moved out of that phase and most of us do.

I was retired on ill health grounds last year and like yourself am unable to bathe unaided. In answer to this my local council (UK) gave me a bath chair, well if you'd told me 3 years ago I would be excited about having one I'd never have believed it! I also have adapted cutlery ad kitchen gadgets, special shoes and a wheelchair. What I do and when is determined by fatigue and pain levels.

Nevertheless I have a wonderful life, it's just different to what I thought it would be and that's not always a bad thing. You can still have a good life with scleroderma and oh yes it can be a long one, I know people who have lived with sclero 20ish years, 10 years and so forth.

We have a page on emotional adjustment that may be helpful. Don't be hard on yourself, it takes time to adjust to the move from the world of healthy into the world of chronic illness and everyone does at at their own pace.

You may want to consider seeing a scleroderma expert as they are best placed to interpret symptoms and determine treatment plans.

I know you may not want to be here but we are pleased to welcome you.

Take care and keep posting.
Amanda Thorpe
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#4 Jeannie McClelland

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Posted 25 November 2009 - 06:31 PM

Hi Kelly,

I also want to welcome you to the Forum and say how sorry I am that you are having so much difficulty. What a way to meet so many new people and make instant friends, eh? We'll be here to hold your hand when you need us and cheer you on with each triumph.

Please do stay hopeful. A good attitude really does help. There is good reason to be hopeful, too. Every day researchers are working,not only to find a cure, but to find better treatments for the symptoms. There's new adaptative equipment being developed every day too.

Are you being seen by a scleroderma expert? I know many of us have found it to our advantage to at least consult with one.

I hope you'll post often and let us get to know you.

Best wishes,
Jeannie McClelland
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#5 janey

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Posted 26 November 2009 - 10:28 AM

Hello Kelley,
I'd like to join the others and welcome you to the Sclero forums. Not being prepared for a diagnosed of scleroderma is familiar to most of us. I was sure I would be backpacking in the mountains until I was 75; but that all came to an abrupt halt when I was 49. Like you, I wasn't prepared at all; however, the more I've learned about managing my symptoms and working very closely with the doctors, I have a good life - not the life I expected, but still - a good life and today, I like many others, are very thankful for what we do have.

You have already received some great advice and warm welcomes from some wonderful people, so I just address the medication situation. As you know there is no cure. A major problem with this disease is that it has so many variations that what works for one person many not work for another. It's just a matter of trying different things until you start seeing some improvement. I was a lucky one that was started on methotrexate right off the bat and did it wonders in slowing the progression of the disease. I was on it for 3 years at which time, I plateaued (which can happen). We do have a large section on medications and treatments. You might take a look at it. It's always good to know your options. Has the Plaquenil been working for you? Why is your rheumatologist looking at other meds?

I hope you are having a wonderful day with family. We look forward to getting to know you better.
Janey Willis
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#6 enjoytheride

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Posted 26 November 2009 - 06:44 PM

Hi Kelley- I know what you mean- you have your eyes firmly on the prize and some one pulled up the draw bridge. How about that for a mixed metaphor?
But I know what you mean- and it's too bad to be so young to have to deal with this. Please accept a :emoticon-hug: from me and my best wishes.

#7 nhguy

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Posted 27 November 2009 - 04:06 AM

Hi Kelly nice to meet you.I'm Pat I was just diagnosed as well, our symptoms are almost identical.I am 43 and filing for disability as well.This site is awesome.More info here than my doctors gave me.
Hang in there,hope you feel better soon
Pat :)

#8 Joelf

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Posted 27 November 2009 - 10:11 AM

Hi Kelly

A warm welcome to the forum from a UK sufferer; sadly I have no more advice to offer other than the helpful tips from the other members but am sending you a :emoticon-hug:

Kind regards x

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#9 waterview05

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Posted 27 November 2009 - 11:42 AM

Hi Shelley,

Thanks for the warm welcome and hugs. I was in occupational therapy, but used all 20 visits, so I have to wait until January to start over. Insurance companies are a trip. I do have exercises to do at home. I don't have a lot of adaptive tools, but need some. My therapist gave me a magazine so I need start perusing it and place an order.

I have acquired some comfortable slip ons. I love shoes and have many, but can no longer wear most of them.

Thanks again for the suggestions and support.
Kelly

#10 waterview05

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Posted 27 November 2009 - 11:48 AM

Hi Amanda,

Thanks for taking the time to respond. Although reluctant, I recently acquired a shower chair and a lift for the toilet seat. I hated it at first (the age thing), but they have both been helpful.

My Rheumatologist is great and he does a lot of consulting with other specialist in the area to include my dermatologist. I will be spending some time acquiring kitchen gadgets. I've been cooking more since I've been off work and I really need them.

Thanks again for your suggestions and support.

Kelly

#11 Amanda Thorpe

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Posted 29 November 2009 - 04:42 AM

Hello Kelly

Bathchair/showerchair=good friend, toilet seat lift=very, very good friend!

It does make you feel like an old biddy at first as you say but needs must. Definately get all the gadgets you can and have fun playing with them. When my bathchair first arrived my husband wanted to use it (why?!) and my cat has made it another place to sleep and she likes to sit on it whilst the bath is filling. Hmmm I wonder if she'd like me to lower it into the bath whilst she's on it...as if!

Take care.
Amanda Thorpe
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#12 Shelley Ensz

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Posted 03 December 2009 - 04:48 AM

Hi Kelly,

Congratulations on graduating from Sclero Welcome Forum! Your introductory thread is now being moved into our Main Forum.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 Peggy

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Posted 03 December 2009 - 01:17 PM

I too want to send a big welcome. It took me a year of doctoring to finally find out what I had. My disease started with swelling of my ankles and then my hands and feet went numb. I now have terrible constant muscle pain in my legs and arms and I know exactly what you mean by the shooting pains in the arms. It feels like you are being stabbed from the inside/out. I am on methotrexate which my rheumatologist is hoping to help with the muscle pain. So far it isn't unfortunately. The pain in the last few days has now added to where when I walk the pain in my upper thighs is stabbing and they are so weak and sore like I've ran a marathon and over-taxed them. I may call my doctor but I don't think there's anything they can do and it's just the way it is. I have terrible fatigue and Gerd issues, as well as lung involvement.

If someone were to tell me years ago where I would be at age 50 I would think they were crazy. I have found that I try to really cherish the good days and realize it's a good day. I am not always lucky that the good ones outweight the bad ones. I have finally I think adapted to the huge change in how my life is from what it used to be. Also having this disease when you are a perfectionist isn't fun to adapt to but you just do.

The best thing you can do is surround yourself with doctors that know about scleroderma. If they don't then don't waste your time as they need to know what this disease can do and not brush it off as something else.

Never feel bad asking a question or venting. That's what these forums are for. It seems that only people that have this disease can really understand what we go through and just how it is.

With regard to disabililty, make sure your doctor really documents what is going on and just how the disease conflicts you and doesn't allow you to work. The nice thing is that in November of 2008 Social Security made Scleroderma a disease that is considered a compassionate allowance disease. In that case you should be fast-tracked for approval and due to the disease should be approved. I applied for disability in November of 2008, was approved in December of 2008, and got my first check in January of 2009. Every day I am so thankful that I was approved as there is no way I could hold down a job. My mornings are good but by Noon each day its like I hit a brick wall and I'm so tired I can hardly stay awake.

I look forward to learning and hearing more about you.

Warm hugs,
Peggy

#14 Sweet

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Posted 04 December 2009 - 12:55 PM

Hi Kelly,

I am so happy you are here. This site is truly a wonderful place. So much information, people who "get it" and great friends. I look forward to knowing you better.
Warm and gentle hugs,

Pamela
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#15 Bill Birtch

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Posted 15 December 2009 - 06:51 AM

Hi Kelly,

Just wanted to say hang in there and that attitude is everything.

Best wishes,

Bill

#16 Amanda Thorpe

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Posted 15 December 2009 - 07:25 AM

Hello Bill

Welcome to the forum, I'm glad you finally decided to post and share your encouragement with others.

Take care and keep posting.
Amanda Thorpe
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