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Biomarker for Diffuse Scleroderma skin has been discovered!


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So happy to find you all.


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11 replies to this topic

#1 LadiDi

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Posted 26 August 2009 - 08:50 AM

My name is Diana but all my friends call me Di and so my web name. I live in Oregon about 90min inland from the coast in a beautiful valley. I have been diagnosed with scleroderma for about 2 1/2 years although some of the CREST symptoms have been around for 10 or more. I have developed severe pulmonary hypertension secondary to the scleroderma and had a pulmonary embolism a couple months ago. I am having a very hard time recovering from the whole thing. I can no longer bathe myself, dress myself or drive myself. Now I am getting ready to start on a PH drug Flolan that is an IV 24/7. I am already on oxygen 24/7 at the fairly high rate of 5 ml. These past few weeks I have been an emotional wreck and have started counseling and new anti-depressant and anti-anxiety drugs. It's only been 2 weeks on them but I think they are helpiing especially the anti-anxiety drug.

Pardon my poor typing, my fingers are very crooked and painful and getting worse as the minutes pass. So this takes me a while and lots of corrections. But I'm not giving up.

#2 Jeannie McClelland

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Posted 26 August 2009 - 11:46 AM

Hi Di,

Welcome to the Forum! I'm really sorry you are having such serious complications, it sounds dreadful. I hope you will post as often as you are able and let us know how the Flolan treatment is working for you. This isn't the first treatment for PH that you've had, is it?

I don't wonder that you've been an emotional wreck, as you say. Smart girl, going for counseling and taking advantage of the medications available. (My oldest daughter is a pharmacist and her motto is better living through modern pharmacology.)

I wish I lived close enough to bring you in my family's standard remedy for absolutely everything - a casserole and a loaf of bread. I'd also give you a hug. Since both the food and the hug have to be virtual, you get to chose the casserole and bread and avoid the perils of my cooking! :lol:

Seriously, though, I'm glad you found us. Anytime you need a shoulder to cry on or just to vent, we're here, and are totally understanding. Welcome, Sweetie.
Jeannie McClelland
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#3 Deb1million

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Posted 26 August 2009 - 01:04 PM

welcome to the 'family' Di!
You have had this a while, but you dont have to struggle on alone any more, we are all here with you.
Hope the new meds help out, and Im certain that the counselling is a good step to take.
Tell us more about yourself when you are able to work your poor fingers. You have the right attitude of not giving in to this complex illness.
take care
Debbie

#4 nan

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Posted 26 August 2009 - 03:04 PM

Di,
Welcome to the forum! You will have great support here. I am so sorry that you are suffering from such serious complications. I hope that all meds will help you.
Take care,
Nan

#5 Amanda Thorpe

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Posted 27 August 2009 - 03:20 AM

Hello Di

Welcome to the forum you are in the right place for all things scleroderma and unwavering support. I am sorry you have so many very difficult issues facing you nevertheless you have made a concerted effort to overcome them rather than be beat down by them. I have a theory that only the best people have scleroderma because people with scleroderma seem able to overcome the greatest odds, never give in and are willing to share their experiences to help and encourge others.

Please let us know how the new drug regime goes and I look forward to future posts.
Amanda Thorpe
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#6 Peggy

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Posted 27 August 2009 - 04:31 AM

I wanted to send a warm welcome to the forum. Here you will gain so much in support, information, and a place to vent. We all have good days and bad days and sometimes being able to spill them in a post makes a person feel better. I have gained a great deal of information that has helped me along and I'm sure it will for you too.

You are in an uphill battle and half the battle is your fighting attitude. To not give up is the key. For every punch this sclero disease gives you then you give it two punches back in a fiesty attitude.

The drug you are on is that 24/7 every day or just now and then? Is this supposed to help in the breathing? My Mom was on oxygen for her COPD and I know what a pain it is but without it she wouldn't be able to breathe.

I have systemic sclero with some lung involvement, gerd issues, terrible muscle pain, and a great deal of fatigue. I have also had some kidney involvement due to the cytoxan I was on. I also have a lung nodule that's being watched which provides an extra worry.

What I have found so helpful is sharing with fellow sufferers of this disease. I have formed some lifelong friendships that I cherish and these people have become like family to me. That's what this forum can do for you in that you are able to reach out.

Welcome and I so hope you continue the great fight you're giving it.

Hugs,
Peggy

#7 LadiDi

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Posted 27 August 2009 - 07:39 AM

the drug is by IV cateter in my chest 24/7 every day

#8 susieq40

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Posted 27 August 2009 - 03:28 PM

LadyDi,

Welcome, I am pretty new to this site too and have found a lot of great information and support. This disease is difficult, but have a lot of hope with new technology and medications everyday. Don't get me wrong..i'm scared too, but am trying to roll with it. I start cytoxn in two weeks. I hope all goes well with your new med, I'd like to know how it goes. Never know what the future holds..make the best of everyday the best you can..

Best wishes,
susieq40

#9 Sweet

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Posted 28 August 2009 - 04:09 AM

Hi Di,

Welcome my friend. I'm so glad you've joined us. :)
Warm and gentle hugs,

Pamela
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#10 smac0719

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Posted 29 August 2009 - 01:28 PM

Welcome LadiDi. I wish you well with your current treatment and hope for better days ahead.
I may have Scleroderma, but Scleroderma doesn't have me!

#11 LadiDi

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Posted 31 August 2009 - 10:24 AM

I like the way you think, but there are days it gets the better of me and I am so happpy to have found you all.

#12 LadiDi

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Posted 31 August 2009 - 11:53 AM

I was on Cytoxan and Prednisone for many months to treat my multiple myeloma and my sccleroderma. It helpped my cancer count but side effecs were kinda hard. Nausea, headaches .