debonair susie

You're "Sweet Pam"!!! Love you too, :emoticon-hug: of COURSE ;), along with ALL our peeps!

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 what we can do (that's taking care of ourselves) and the things we cannot do, we (after time) accept. I too, was a VERY good housekeeper...as a matter of fact, I used to clean houses for others while my children were in elementary school! However, once Scleroderma got a HOLD on me, I REALLY had to re-vamp my thinking...what I COULD/couldn't do. The Spoon Theory is something EVERY ONE should read and live by! Judy, you brought up that folks who aren't aware of our illnesses say we look so good/GREAT! You hit the nail on the head, in that by the time we get groomed, we are spent!!! There was a time when I could do EVERYTHING I felt needed to be done...make it to all activities of grandkids/kids, but just can't do it any more. Judy, as you say, there are OTHER things we can do with the grands that require less energy and have that quality time; we're innovative enough and can love that special time with them; Kathy, same for your family...enjoy them! :emoticon-hug:

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:

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!

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; she also mentioned how difficult it can be to get a satisfying diagnosis, [especially at the onset] of symptoms. After MANY diagnostic tests and much frustration, my diagnoses was given in 1995, four years after symptoms first presented. As Margaret alluded to, so often, there can be overlapping illnesses, with symptoms that may fit ONE disease, yet not ANOTHER! :emoticon-dont-know: It seems you are doing a fine job of tracking your symptoms, but please...don't let whatever is going on, take control of your quality of life; take it from me... stress/worry are not beneficial to anyones' better health. Those things you are able to do and enjoy, continue with them! In the meantime, red through the links/information here and know that we are glad you have joined us here!

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!

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. TUESDAY: 5 PM Pacific Time 6 PM Mountain Time 7 PM Central Time 8 PM Eastern Time 2 am UK (Wednesday) 3 PM (Wednesday) Melbourne Australia WEDNESDAY: 11 AM Pacific Time 12 PM Mountain time 1 PM Central time 2 PM Eastern Time 7 PM UK 9 am (Thursday) Melbourne Australia FRIDAY: 8 am Pacific Time 9 am Mountain Time 10 am Central Time 11 am Eastern Time 4 PM UK 6 am (Saturday) Melbourne Australia WE really look forward to "seeing" you in any/all of these Chats!

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 all of you in our thoughts

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 better quality of life. You have been a member here for many years and you have been SUCH a great friend to so many of us, through your loving support and I (for one) thank you for that, Mi! :emoticon-hug: Please know that there are a BUNCH of us rooting for you! :emoticons-line-dance:

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 want any deterrents to prevent ANY of you from coming to the Chat Room...when ANY of you make/take the time to come to the Chat Room, our goal is to make it as comfortable as possible for members to chat about health issues...as we want you to come BACK and CHAT with us whenever it is possible (for you). You raised a VERY important point, Kathy and I would like to speak to it, as well as other great points you made, if I may. 1) DO you have Finger Ulcers, Sensitive Fingertips, Fingers that lack mobility or some other reason that does not allow you to type as fast as you would like? Not to worry!! We have great empathy for whatever concerns you may have...after all, we are in the same boat, have been or WILL be and have NO speed records to break! 2) We want everyone to rest assured... the Forums/Chat Rooms are provided for a reason...to share concerns, experiences and hopefully, get feedback from others. If conversations start to get away, we just reel it back because we like for EVERYONE to chat! :emoticon-hug: Give the Chat Rooms a try...You may be glad you DID ;) We DO hope that you are able to join any/all Chats in the near future...it would be GREAT to have you back, Kathy! ;)

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 just not suit your particular schedule. When these particular Hosted Chat times where chosen, it was with the idea to accomodate time zones of members. 3) If you ARE interested in joining a Hosted Chat, but none of the times FIT... for you, please PLEASE respond, as we would LOVE to have you there! IF you are not comfortable posting (about this) on this thread, but want to let one of us know, it would be great if you message EITHER myself ( Debonair Susie) OR Jo; I host Tuesday and Friday Chats and Jo hosts Wednesday Chats. 4) I LOVE that Jo and I host these chats and we really DO enjoy meeting you and allowing you the opportunity to chat COMFORTABLY; that is what it's all about! **HOWEVER...the option is STILL available for you to chat with another member WITHOUT a HOST too!! (The Chat Guidelines are the same, whether a HOSTED Chat, or not). We want you to feel at home in the Chat Rooms, as it's a wonderful place to get/share health information with each other! :emoticons-line-dance: Okay!! Jo and I are looking forward to your posts, whether they be here OR to one/both of us! Please, share your thoughts with us!

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 as to how you are doing and should you have any queries, please pop in anytime, as we'd love to hear from you! In the meantime, I am sending you and your family virtual hugs :emoticon-hug: :emoticon-hug: :emoticon-hug: