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03-29-2021 10:57 AM
Having worked in the medical field, I've seen a couple of patients' struggle with this awful disorder. I'm saddened you're one of them, as well.
You come across as very strong, carrying such a burden. And, you're always willing to step up to offer caring advice to others here.
You've not allowed this illness to poison your lovely spirit. You are the light we'd all hope to be, in facing serious challenges.
I'm glad you felt comfortable enough to share your journey here. Everyone has trials, but they're made easier when we don't feel alone with them. Best to you always. {{{hugs}}}
03-29-2021 11:23 AM - edited 04-10-2021 12:30 AM
@SilleeMee wrote:In my wreckage I've found hidden treasures in myself. Things like being more humble, being more compassionate and learning to live for today...in the moment! Everything happens for a reason, good and bad.
Beautifully said. I've always enjoyed your posts and had no idea of the challenges you face daily. The way we deal with the trials we face, is the true merit of a person. I admire your strength. Wishing you the very best that is possible every day.
03-29-2021 12:50 PM
@SilleeMee From previous posts, I was aware you were not healthy and often suffering. However, you had never (to my knowledge) shared the extent of your medical problem. Your strength and resilience keeps you a charming and friendly person who contributes well to any conversation. It's a pleasure to "know" another person who doesn't let their health ruin their personality. You live with a devestating disease with grace and dignity.
Thanks for sharing what your life is really like. It was painful to read, but so beautifully written in such a positive attitude. Your physicians must find your office visits a joy in comparison to their other patients! Keep up the great attitude. Gentle air hugs.
03-29-2021 12:58 PM
Thank you so much everyone!
But this thread is for @hick and not about me. I hope the OP comes back and gives us an update of their diagnosis. In the meantime I wish the OP the best of luck.
03-29-2021 02:53 PM
Thank you, @SilleeMee, for letting us know what you must deal with every day. You are a very strong person and a very lovely one, too. I wish you the very best possible day every day. I had no idea of your daily struggles until now.
You did not hijack the post at all. You simply reminded all of us that we must be kinder to everyone who posts at this forum, because none of us have any idea of the types of personal challenges, experiences, illnesses, or intense issues others face, unless or until a person elects to reveal them. Thank you for that reminder.
03-29-2021 03:34 PM - edited 04-08-2021 06:26 PM
Sending you {{{Soft Virtual Hugs}}}.
***I may not be able to do a certain thing today,
Perhaps I will be able to tomorrow.
I will do what I can today,
And appreciate what each day brings.
💙💙💙
04-01-2021 01:39 PM
@SilleeMee wrote:I was diagnosed with scleroderma almost twenty years ago. It has affected almost everything in and on my body, not to mention the emotional and psychological effects which have also happened to me.
Scleroderma means 'hard skin'. But it is more than just an autoimmune skin disorder. It involves everything which has connective tissue....and that's almost everything.
I have heart valve, lung and kidney involvement. Malnutrition and low vitamin levels from malabsorption issues. Incontinence (comes and goes) with both #1 and #2. My hands are permanently in fists where my fingers can't move and cutting my nails has become a huge problem...my rheumy suggested I get my nails permanently removed. I have chronic joint pain everywhere, my neck especially. I have dental problems....lost 6 teeth and gums have receded so much that now I need work done. I have extreme hair loss. My skin is so tight in areas, including my face, that it hurts and itches all the time.
There's more. I know! I sound like a complete mess but that's what it is. It's taken a long time to get along with living and there were times I thought I couldn't do it any more. But I'm still here and doing okay.
I am so very sorry, as you know my dad had this, it is very scary.
04-08-2021 06:27 PM
Have you gotten any additional information from your physicians?
Wishing you Well
04-09-2021 03:55 AM
Oh I am so sorry all you are going through. We just don't know do we what each of us goes thru every day. My heart goes out to you.
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