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New and fearful, thanks for listening

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10 replies to this topic

#1 Kathy D

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Posted 10 March 2009 - 09:25 AM

Nice to meet all of you,

I am 38 year old female, no children but married to wonderful husband.

I was shocked that my story has so much in common with some of your personal stories, swollen hands, nonfreezing "frostbite", fever, fatigue and joint pain.

Guess I am shocked in general, one minute employed and had endless energy, and now surfing the internet for scleroderma prognosis.

I used to be pretty, energetic and fun loving. I have turned into a blob that walks funny does nothing but surf most the day and I look so tired, look so old. My house has deteriorated and doing laundry or showering is challenging with finger ulcers. My husband now does the cooking and most dishes but I never realized how much I did to keep the house running and comfortable. My plants are dying because I have not watered them and I am still working on potty training our new puppy even though he is 5 months old. The decline in job performance probably influenced my getting laid off.

Sorry to be a downer, any advice is be greatly appreciated!

Thank you for accepting me and I look forward to sharing and supporting with you.

Diffuse Scleroderma Diagnosed March 2009

#2 janey


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Posted 10 March 2009 - 09:40 AM

Darlin' KD,
I am so glad that you have decided to join us here at ISN. You will find lots and lots of information, but most of all - lots and lots of hugs. Here's a big one:
((((((((((((((((((((((((((BIG HUG))))))))))))))))))))))))))))))) (but gentle).

I'm so sorry to read about everything that you are going through right now. Many of us have been through the same experiences and frustration, AND the majority of us seemed to have pulled through with the help and support of good doctors, family and friends and ISN. Please make sure that you have a good rheumatologist, preferably a scleroderma specialist. If he's not a specialist, at least make sure that he has treated LOTS of scleroderma patients and is very familiar with this disease. It is different for everyone, so very few doctors know everything that could occur.

You mentioned that you have DUs. If you haven't found it already, here is the link to the ISN page on Digital Ulcers. You might find a treatment or two to suggest to your doctor to help eliminate them. Just be sure to stay warm and don't let those little hands of yours get cold. You need that blood flow getting to those fingers.

We also have a section on Emotional Adjustment. You might read through those pages as well. You might finds some things you hadn't thought about as to how to relax and decrease your anxiety.

Please work closely with your doctors. Be sure to address ALL of your concerns with them, including the fatigue. That's just part of the disease, BUT it can be decreased through the right medications and treatments - mine has anyway.

Hang in there Darlin'. Please visit us a lot! We're here for you.

Big Hugs,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#3 Jeannie McClelland

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Posted 10 March 2009 - 11:59 AM

Hi KD,

Welcome to the Forum! You've just made a lot of very understanding new friends!

I'm sorry you are having such a tough time. You don't say how long you've had your diagnosis. If it is recent, you might not believe this, but things do get better.

Physical things, like digital ulcers come and go, and 'mental' things get better too. I think that's been a common experience amongst our Forum members. At first everything seems awful, far too much to cope with, especially given sometimes profound fatigue, joint pain, and general lack of energy. I found the fear of the unknown was a major issue. I didn't know what was coming, and the fear just added to the way I was feeling. It's been 2 years and 4 months for me. Once I learned more about the disease, got some new coping skills, and got some time under my belt, I pretty much regained my old self. I think others will probably tell you they've experienced much the same thing.

Janey's links are great. I spent a lot of time on the Emotional Adjustment page in the beginning. So let's see if we can address another one of your problems: fatigue. Here's a link to the Fatigue in Scleroderma page. Believe me, that one is well worth surfing!

My great rheumatologist always asks me "What symptom is bothering you the most? What's stopping you from doing what you want to?" We've worked through things one step and one symptom at a time and wow, what a difference it makes getting one thing after another under control.

So here's another gentle hug!
Jeannie McClelland
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#4 Margaret


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Posted 10 March 2009 - 01:03 PM

Hi KD ,

Welcome to the group. You didn't say if you were taking any meds for your Sclero. My son started with major fatigue, esophageal dismotility, restrictive lung issues, loss of voice, and what was called autoimmune depression. The same immune process that attacks the rest of the body messes up the seratonin levels in the brain. After being put on an antidepressant & Plaquenil, his symptons subsided. I hope you can get some help soon.

Take care, Everyone.

#5 Kamlesh


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Posted 10 March 2009 - 03:10 PM

Hi KD,

Do not be discouraged. Keep your hopes high and things will turn around. I spent two worst years of my life tackling scleroderma, but now I am in much better shape. There are so many members on this board have gone though same cycle you are going through.

Do not worry about all materialistic things – house, plants, etc.
At least you have wonderful husband and cherish the relationship.

Be aggressive in getting treatment and things will fall in place in due time (may be 12-24 months)
Kind regards,


#6 PrincessB


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Posted 10 March 2009 - 09:50 PM

Hi KD,

I'm sorry to hear you've been diagnosed - it can feel like a bit of a life sentence, can't it? But you'll get past this initial shock and realise that there are lots of treatments for your symptoms that will enable you to lead a normal life (what is normal, after all?). Try and stay positive - OK, you've been laid off, but what better time than when you've got a gorgeous puppy at home to play with? And also you can sleep more! There is so much information on the internet, it can be overwhelming and extremely scary. Each of us is unique and even when symptoms sound the same, it doesn't mean you've got what the other person has. It's hard, but don't surf too much, that was a valuable piece of advice from my specialist.

And whenever you feel like it, we're here for you to let off steam with x
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#7 Penny


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Posted 11 March 2009 - 04:27 AM

Hi there KD and welcome to the Forums!

I am sorry that you have the diagnosis but happy that you found this wonderful site, the staff here is unbelievable when it comes to offering the latest news and scientific studies on Sclero as well as being some of the nicest people you will ever meet... and the rest of us are hug-o-holics who will always have a shoulder ready and a laugh to pass on.

I know that it is hard to deal with right now, especially with the layoff situation because you feel all alone in this, but know that we are here to help you in any way we can and will stand behind you to give you strength when you need it.

If you want, you can send me a private message and I can help you with the house training of your puppy... I have some great tips on how to hurry up the process in a more stress free way and can even help with ways to train your puppy to do things for you. It can be very rewarding to watch those young minds when all of a sudden it 'clicks' and they realize that action A gets reward B and with every new thing learned they seem to learn faster and faster... that and it is a great way to pass time.

Huge warm gentle hugs,

#8 razz


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Posted 11 March 2009 - 07:08 AM

Welcome KD,

I'm sorry to hear you have SD and how your lifestyle has changed. I know the feeling of having to accept a different life style. For me, it took time, this board, education, adjustments and continuous monitoring of my health to find a level of comfort and a new (albeit different) "normal" life. How I approach each day and its challenges affects how I see my overall situation. Small minor accomplishments like running an errand, completing a chore or making a simple meal helps me realize if I take my time and use my energy sparingly, I can get through the day and feel good about it. Maybe the next day I will tackle a load of laundry or vacuum sweep three rooms versus the whole house. I also had a huge collection of house plants but since they do require care I gave them away except for a small one. Some days are better than others. I am retired, literally, but now I can say I have all that time to either relax all day or accomplish what I can.

Your husband sounds very loving and understanding and that makes all the difference. Surrounding yourself with supportive and positive people is helpful to your mental well being. My solution to washing dishes is my dishwasher. Yayyy! Sometimes I do wash a dish or pot, but I'll use the hand with the least affected ulcers to do the scrubbing.

You are still pretty and fun-loving, it's your enery that been depleted. I walk different now too. Sometimes I'll try and run and skip (after throwing out my garbage and no one's looking) for a few seconds and it feels good, even though I look stiff trying. When I get inside the house, my daughter will look at me and say "Who was running?". I'll say "Me", at least trying.

Any time you need to vent or support we are here for you.

(I'm Razz the one on the You-Tube video. You can see the "new" me. But no one here knows the "old" me, so to you I might look pretty normal huh?)

P.S. Enjoy your puppy, eventually he/she will get the hang of house-training.
Live well, Laugh often, Love much

#9 debonair susie

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Posted 12 March 2009 - 09:42 AM

Hi KD,

I am so glad you are here and I hope to see you posting often!

It's so wonderful you have a supportive husband. It's also awesome that he helps out by cooking and doing the dishes.

It's really amazing how easily we were able to do such things and now...how long/difficult/fatiguing to function!

My symptoms began rearing their ugly heads in 1991 and taking care of a household, along with holding down a job...took its toll (on me), too.

In retrospect, I now understand WHY I was so tired, WHY I was so frustrated...for physically not being able to complete the chores (at home) that I used to be able to do with relative ease.

Oooohhhh, how I took for granted, my health...."back in the day".

Oh, you're not a downer...we really do understand.
Here's a {{{{{Big, Soft Hug}}}}} to help tide you over until you need more!!!
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#10 Kathy D

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Posted 12 March 2009 - 10:48 AM

Ladies (and Kamlesh),

I cannot thank you enough for the kind supportive responses. It means so much to me to be part of a group that understands.

I have read each of your posts multiple times and really took to heart what you have said to me. Please understand how helpful your words have been for the last few days! From the bottom of my heart thank you:)

Dear husband is picking up my first scrip of Plaquenil tonight and I hope it helps me to find my new "normal", (haha) though I heard it takes time to kick in.

I am on Paxil right now and it has been a miracle for me. Unfortunately I am not a stranger to clinical depression, on the other hand, dear husband and I can recognize things pretty quickly now if I do start that slippery slope.

I feel fortunate that I was diagnosed so quickly (thanks SCL-70!) and that my rheumatologist is taking good measures, baselines, told me to take my blood pressure daily, and even fit me in on his "no patients paperwork only day" to review bloodwork and start treatment.

Take good care all of you, promise I will too!

Diffuse Scleroderma Diagnosed March 2009

#11 Peggy


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Posted 13 March 2009 - 01:27 PM

Dear KD:

Welcome. Sorry that this disease is what brought you here but we are all here and in this together. This is a great place to go to for friendship, to vent, to get support, to learn new things, to ask questions, and to be there for each other. You have an ace in the hole in your husband. That is something that will be a constant in your life and is so important to go through what we have to with this disease. There are quarterly apts and tests all of the time. The disease is ever changing and you have to stay on top of it in order to fight it.

You were lucky you were diagnosed so quickly. It took me a year of going from doctor to doctor and telling each one of them over and over that I knew something was wrong. They thought I had everything from MS to Lou Gehrigs disease to post-polio. When I finally got the news it was the first and only time that I went to the apt by myself. So to get such devastating news and to be all alone was so hard. I, like you, was so scared and overwhelmed I didn't know what to do.

Well I started here and right off the bat I was given constant support and understanding. I continue to deal with terrible fatigue and terrible muscle pain. I have systemic and it's in my lungs but is being kept at bay with Cellcept. My husband, thought he's scared, has had to change his life so much too as a result of the changes that this disease has brought to our life. But we are together and he's always there for me.

If you ever need to talk just give me a private message. I'm always there to lend an ear and to offer solace and comfort.

Warm hugs,