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kris52770

Brand new to this

20 posts in this topic

Hi Everyone, I received my news last Friday. In one way I was glad to finally have something to call what I commonly called Chester (the monster who was living inside) on the other hand this sent me for a loop. Started this journey in October with incredible amounts of joint pain, all kinds of crazy symptoms followed. After months of being treated like I was out of my mind finally a dermatologist figured it out.

 

I can tell you that I have been on this site everyday since I found out. I had never even heard of this. After a very bad weekend of trying to figure out what to do I decided that I will get all the knowledge I can and live life the best I can. I have a 9 year old to think of. Just wanted to say Hi and introduce myself. I have been inspired by some of the things I have read on here. I now have hope again. Thank you all for that.

 

Bless you,

 

Christine

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Hello Christine

 

Welcome to the forums! What form of scleroderma have you been diagnosed with? You'll find oodles of information here about scleroderma whatever form you may have. I would suggest that if you are reading about scleroderma you stick to this website because some of the stuff out there is, well out there!

 

By the way we're all for having the best life possible here!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

I am still waiting to find out what kind, at this point they are waiting for the second set of bloodwork. They found it through a skin biopsy and ANA results. I appreciate the kind words. Looking forward to meeting lots of people that can understand the crazy unexplained symptoms.

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Hi Kris,

 

Welcome to the Forums! Crazy symptoms are our speciality. :lol: We'll look forward to hearing more from you as you get more information from your doctors.

 

Seeking information is what brought me to the site too. So far, if I have any questions, I've found the answers here. It's wise to know as much about the disease and how your own unique course is manifesting itself at any one time (or should I say, how Chester is behaving?). Don't let some of the scarier information you'll probably read throw you for a loop, though. We've just had a new member join with a 25-year history of the disease! We all come to our own accommodation with the beast and discover lots of work-around's when and if we need them. I have to say I'm certainly still finding life pretty sweet. :)

 

Warm hugs and best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Christine,

 

A very warm welcome to these forums....to you and to Chester!! :lol:

 

I'm afraid that crazy symptoms are all part of the course for this complex disease and one of the bizarre things is that Scleroderma affects different people in many different ways. As Jeannie has said, one of the best ways to deal with it is to find out as much about it as possible - knowledge is power! ;) I've included a link to emotional adjustment and pain management which I hope you'll find helpful and interesting.

 

You will find that you will still be able to have a good quality of life and now you have the added bonus of knowing that you're among like-minded people who understand the worry you're experiencing and can totally empathise with you.

 

Do please keep posting and let us get to know you. :VeryHappy:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Christine,

Welcome to the best place for information, humor, and support! You are probably at the "scared to death" stage, I just want to let you know that I have had scleroderma for 7 years with renal failure and interstitial lung disease (the major causes of death) and I am still alive and kicking'! If I had gone by what I read I would have been dead four years ago. When I found this forum I discovered others who were beating the statistics and it motivated me to go on. So stay calm, be informed, ask questions and don't' read to excess the horror stories on the internet.

 

:emoticons-group-hug: As a matter of fact, read

my newest post for some GOOD news! :emoticons-group-hug:

miocean


ISN Artist

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Welcome Christine! Sclero. is a scarey disease to be diagnosed with; I'm glad you found your way here. There's a lot of support and knowledge on this site and really nice people who are always willing to share a story or a joke. I think you're handling it well.

Best wishes,

Karen

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Hi Christine

 

You've come to the right place for good factual information. There is always someone here in the know that understands plus you'll find a great support system too.

 

Do you have another appointment set for the rest of the results you are waiting on? I do hope you keep us updated on how you are doing.


Sending good wishes your way!

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Thank you all so much for the comforting thoughts. I am amazed at the strength you all have. Being the newbie I hope I don't annoy you with my questions. I am meeting with doctor next week. I imagine that they will run some tests to see which type it is. I do have some questions. Has anyone had any head fogginess. This has been driving me crazy all day. My hands are very swollen today and they looked streched out. They are red and the color ranges all day is this normal? I also feel like there is pulsating in my stomach. If anyone has experienced these and could let me know. Thanks for your patience.

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Hello and welcome Christine.

You can never ask a stupid question here. We have all kinds of answers, so ask away. Also, I almost always can find what I am looking for by searching the site - we have tons of resources. I am 2 years into my diagnosis, although I had weird symptoms for several years before I really said anything to my primary care doctor. Swollen, red hands is an all too familiar symptom. It will calm down once they get you on some medication - but I still have episodes of swelling and tightness in my hands. Brain fog can be due to many things, but often is related to the fatigue that is a hallmark symptom. In general, the disease does not affect your brains (thank goodness) but for sure there are lots of symptoms, and medications, that can tax your brain clarity.

 

I am happy to report that I am almost as active as I was before I got diagnosed. And I do mean active. I am out snow shoeing, hiking, climbing almost every weekend. I have figured out tons of work arounds, as have many people on this forum. Feel free to ask how we manage things. I think the most important thing to remember is to live your life to the fullest you can every single day.

 

Jill

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Hi Christine!

I see you've "met" some of us and am SO glad you found our site! :high-five:

 

While it can take some time to receive a diagnosis, it sounds as though you and your dr(s) are headed in the right direction.

 

In the meantime, I'm sending lots of Hugs your way. Welcome and please post often!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Christine

 

Welcome to the Sclero group. We all have a wide range of symptoms and difficulties, but we are here for each

other! HUGS!! I hope you find comfort in coming here, I know I have!

 

HUGS, Susieq40

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Hi Christine,

My brain feels foggy a lot (trouble remembering and concentrating). I think is from my pain meds & anti-seizure meds and trouble sleeping - my doctor suspects sleep apnea so I'm scheduled for a sleep study this Thursday.

I like what Jill said about "work arounds"! I work around my brain fog by writing everything down in my Day Planner - things to do, people to call and their phone numbers, groceries I need, whatever, it all goes in there.

 

Karen

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Hi Christine

 

Sorry for the late reply, but welcome to the forums! You will find loads of helpful information here and kind people to share things with. Keep posting!

 

Cheers

Jean

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Hello There! I say welcome to our site aswell.

 

You will find a warm welcome and acceptance as well, do not feel that you cannot ask your questions and share your fears, frustrations....it comes with the scleroderma territory!.

 

Yes, I suffer at times with the brain "foggy" and the hands that can be every colour and size you can imagine all in the space of an hour :emoticon-dont-know: .

 

I simply have learned to just go with it and just not get upset about it as I find getting stressed and upset makes the whole thing harder; try to laugh things off and people will just learn to accept that's how you are!.

 

Sadly, the transition can be difficult. For me it was the feeling of losing my control of my everyday activity, but I've learned to problem solve by having pads of paper and pens all around the place, so if "foggy" is in that day I keep on top of the important things. My family jots things down they need so I don't forget them, then when I'm in "clear skies" and I am functioning normally I use the day to get things sorted :emoticons-line-dance: .

 

Do not beat yourself up my dear just ....go with the flow, you'll get there just like the rest of us! :emoticons-group-hug: .

 

Take care and keep posting about your journey ok?

Hugs

Lynn

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Hi Christine,

 

This is a great place to find answers to anything. I know when you talk to people who do not know or understand this illness they can make you feel mad but here no matter what your symptom is somebody, somewhere will understand or suffer with the same symptom and it does give you peace of mind.

 

As for the swollen colour change hands I too suffer with that and they are so tight and stiff, more so when I wake up in the mornings. My hands will range in colour from red, whites to blues and this is associated with Raynauds but I also have patches on my hands that stay permenantly red; and as for the fogginess in your head I have days that go by when I can't even remember what happened earlier on in the day or can't remember conversations or arrangements I have made.

 

The best advice I can give you is to take each day as it comes and each symptom as it comes instead of over worrying about them all. Some will stay for a short visit and others may stay for a while and some may stay for long term but just deal with each one at a time and take each day as it comes.

 

hugs and loves :emoticon-hug:

Queenie x

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Hi Christine,

I am sending you a link to brain fog from an earlier post. Although when I discussed this with my sclero specialist she did not feel it was related to the disease and neither did my nephrologist think it was related to an anti-rejection drug, Prograf, that I take for my kidney transplant, many on my transplant forum complain of ADD like behavior. :emoticon-dont-know: However, I, personally, have notes all over the place and find it difficult to retain information. Always a good student and quick learner I now find things take longer to absorb and I really believe it is a combination of the disease, medication, and age. The only solution would be more testing and more medication, so I just have piles of papers, stickies and notes on my phone, alarms set to take medications, and I try to write everything down. The trouble is finding where I put it, especially since I knocked my "organized" pile of notes on the floor and now can't find anything. Or I take a note and then later don't know what the note means. :blush:

 

miocean


ISN Artist

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I get the forgetfulls all the time, I can't remember what I did in the morning by the time the afternoon has rolled around. I bought one of those daily pill dispensers so I can tell if I took my pills for the day or not! I have found some really good free programs on the net that you can put on your computer to replace all the notes and stickies! If you want a few suggestions just PM me or search them! They work great as you can set alarms, change colours to suit your needs and they dont blow away when it is windy!

 

Cheers

Jean

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Count me in on brain fog! I repeat myself, I repeat myself, I repeat...you get the picture. I forget things and I can't find the right words either! :emoticon-dont-know:


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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