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About debonair susie

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Disappointed, first signs of hand sclerodactyly
debonair susie replied to Kathy D's topic in Sclero Forums (MAIN)
You're "Sweet Pam"!!! Love you too, :emoticon-hug: of COURSE ;), along with ALL our peeps! -
Disappointed, first signs of hand sclerodactyly
debonair susie replied to Kathy D's topic in Sclero Forums (MAIN)
Hi Ladies! GREAT posts!!! OH yes...... we DO know and can relate to the "sausage fingers", hence the typos (those who are at chats know VERY well what I am saying ;) :P lol) Kathy, I had THOUGHT about having my rings re-sized, but instead, I got the ring insert, for the times my swelling subsides; I was also inclined NOT to wear them, though I didn't care much for that either. As for the fatigue, it's important to "listen" to your body and rest when needed; THAT was hard for me to start doing, but quite necessary to do...we get SO wiped out SO quickly, without a doubt! We must do -
Chat Room "News" for ALL Forum Members
debonair susie replied to debonair susie's topic in Sclero Forums (MAIN)
Thank you so much, miocean and Kathy D for your invaluable input! Any Thing that we might be able to do, that would help members, is DEFINITELY a plus! I'm SO happy the two of you enjoy chat times and feel comfortable there; we ARE friends/family and hope you are able to join us there as MUCH as you are able! :emoticons-clap: Hope everyone has the best weekend possible!!! :emoticon-hug: -
Kudos Heather! Thank you for MORE great suggestions! :emoticons-line-dance:
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Hi Heather and Welcome! I'm glad you have gotten a diagnosis, but sure understand how you must feel; dealing with pain is something NONE of us do well and I hope you have found something to help with it. You gave WONDERFUL suggestions...GREAT to live by! So glad you've posted and look forward to hearing from you more!
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Hi Zeen! First of all, I want to welcome you here and am SO happy you have found our wonderful community of folks :emoticons-yes: So many of us have worn those same boots, with regard to where you find yourself... lacking a definitive diagnosis (es); for that very reason alone, you are at the right place! Here, you will find a wealth of medical information (Amanda was good enough to supply you with some GREAT links), which should help a bit. As Margaret mentioned, she has caregiver knowledge of her son, Gareth's walk with Scleroderma and has shared his issues with Scleroderma;
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Chat Room "News" for ALL Forum Members
debonair susie replied to debonair susie's topic in Sclero Forums (MAIN)
Hi Judy and thanks for posting. I can appreciate where you are coming from; there are alot of folks who feel as you about chat not being something they desire to do. However, for those of you who would LIKE to join in, it really helps to develop a one-on-one relationship with those who are there for the same reason! (I've made some VERY special friends, as a result of participating in the Chat Room and I cherish them and thier friendships)! :emoticon-hug: Hope your weekend is the best, Judy and all! -
Chat Room "News" for ALL Forum Members
debonair susie replied to debonair susie's topic in Sclero Forums (MAIN)
Just to let you know.... Twice a year (March & November), there are time changes that take place in the USA (except AZ) and the UK; unfortunately, the USA "springs forward" BEFORE the UK; this occurred the FIRST SUNDAY in March and the UK will do so the LAST SUNDAY in March! Then In NOVEMBER, the FIRST SUNDAY the USA "falls back" and the UK "falls back" the LAST SUNDAY IN OCTOBER. The Hosted Chat Times posted below are for April through October; November through February. -
Chat Room "News" for ALL Forum Members
debonair susie replied to debonair susie's topic in Sclero Forums (MAIN)
GREAT suggestion Jo!!! Same here All!! I would be happy to try and do the same -
Mdduk, Your wife is SO fortunate to have you as her advocate and we thank you SO much for keeping us updated, despite these (obviously) very stressful times. Though I am VERY relieved to read that your wife is responding well to her present treatment, you have EVERY right to feel as you do about her (lack) of appropriate treatment...prior to this time. I hope you are able to sound off (if you should desire) to those responsible; if NOT, we have VERY broad shoulders (on these forums) and GREAT empathy...for you, your wife and family :emoticons-group-hug: We will continue to keep a
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Be Careful with disposable heat packets
debonair susie replied to Kathy D's topic in Sclero Forums (MAIN)
Great Warning to pass on, Kathy....Thank you! I'm REALLY glad you still have enough feeling, that you COULD sense that the heat packs were too hot (in your slippers) and took them out beFORE they could do damamge to your skin/feet! Funny as it may sound, there are ALOT of us who CANNOT sense hot/cold differences and really have to be cognizant of that fact! Hugs to You! -
Hi Miocean, Thinking of you today as you trek through your appointments, getting ever closer to a lung transplant. I hope this gives you comfort, what I'm going to say... The family of the kidney donor would be VERY pleased if they knew of how you have "passed it on", through your support of others, just here on the Scleroderma Forums! You are a wonderfully, caring, giving and special lady! You have shared (here), for the benefit of all members, your "walk" ...through trials, your trek up to and (including) your kidney transplant, it's effects and how it has added to your bet
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Chat Room "News" for ALL Forum Members
debonair susie replied to debonair susie's topic in Sclero Forums (MAIN)
OH MY!! Bless your hearts, both Amanda and Shelley, (Jo too) ! You ALL are VERY Special to me and are GREAT Role Models here, on the Forums I thank you SO much for your complementary inputs! Jo, for a "one-fingered typist", you put MY typing to SHAME :P lol (By the way, my Friend, I thank you SO much for joining Friday Chats, whenever you are able). Now Kathy, I am REALLY appreciative of YOUR very valuable input, concerns and thoughts; this is EXACTLY what I was hoping for!! I can appreciate how frustrating it can be, to feel left behind in the flow of conversation; We do NOT -
Hi Everyone!! I am posting this to get information and would REALLY appreciate your input, if you would....PLEASE!! It has become necessary to find out the "Interest Level" of all of you, where the Hosted Chat Rooms (namely Tuesdays and Fridays, are concerned). 1) Are you able to get into the Chat Room(s) of choice, or are you having trouble? 2) Is there a BETTER time that might work BETTER for you? ( I ask this question because we like to accomodate you, whenever possible). There are folks who work, have families, other commitments, etc and the present Hosted Chat times may ju
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Scleroderma En Coup De Sabre
debonair susie replied to IHaveEnCoupDeSabre's topic in ISN Website and Donation News
Hi Amy! It is truly very nice to meet you! I am REALLY glad you have come to this forum, where folks are wonderful and VERY supportive, I've found! Perusing the information under medical, (as well as the great links Jo provided you) may help you better know more about your illness. Like Judy t, I'm unable to speak to you, (first-hand) about your illness, but I am hopeful you will gain much insight before long. It really IS great, knowing you are not alone, having others to relate to/with. (What a beautiful photo of you and your daughter, by the way)!! Please keep us posted