Comments on: Coma sleep, with a side of hot burning legs please http://arimayasheart.com/2008/07/02/coma-sleep-with-a-side-of-hot-burning-legs-please/ my new life as a chronically ill woman just trying to make it through... Sat, 22 Nov 2008 06:56:51 +0000 http://wordpress.org/?v=2.6.1 By: Michelle http://arimayasheart.com/2008/07/02/coma-sleep-with-a-side-of-hot-burning-legs-please/#comment-430 Michelle Wed, 19 Nov 2008 15:17:17 +0000 http://arimayasheart.com/?p=132#comment-430 Irishbookfairy, I am so sorry that you are going through this. It's hard enough to be that sick and scared but then to not have support makes it all the more. If you don't mind I'd like to send you some links to a few online support groups that have been integral to me for support and information. And I'm always here if you need to talk, just drop me a line. Let me know how your doing, ok? soft hugs, Michelle Irishbookfairy,
I am so sorry that you are going through this. It’s hard enough to be that sick and scared but then to not have support makes it all the more. If you don’t mind I’d like to send you some links to a few online support groups that have been integral to me for support and information. And I’m always here if you need to talk, just drop me a line. Let me know how your doing, ok?
soft hugs,
Michelle

]]> By: irishbookfairy http://arimayasheart.com/2008/07/02/coma-sleep-with-a-side-of-hot-burning-legs-please/#comment-422 irishbookfairy Sat, 15 Nov 2008 07:12:13 +0000 http://arimayasheart.com/?p=132#comment-422 Hi, I am so sorry that you are going through all of this. However I can say with all honesty that instead of sympathy I have empathy for you because I am basically going through the same thing. Its been going on for over a year. Started with a ANA of only 1:80 with a scleroderma pattern. The next time I came in it was 1:40 so they acted like that was the end of it (small town medical minds). I would not let them. Like you, I just want a diagnosis. My hands look a lot like yours but my knuckles are a constant grayish color, I have Raynauds and my palms are shiny and kinda rough and that is spreading upwards. My monster is my feet. My legs are huge and rock hard. They ache and burn. I am supposed to go back in in December but I plan on a "walk in" tomorrow. I am not going to keep living this way. My family is so non-supportive, I had an appointment with a scleroderma specialist in Houston and my parents and my husband were actually arguing about who was going to take me as neither one of them wanted too!! I just called and cancelled my appointment. I asked my mom if I had this disease would she make sure I went to Mayo or saw a sclero specialist and she said "well yeah I guess we would "have" to. I know how much I am a burden and chore now. Oh well, its nice to know someone out there knows how I feel. Take care and when you go for one of your coma sleeps think of me because I will probably be lyind down for one of mine also! irishbookfairy Hi,

I am so sorry that you are going through all of this. However I can say with all honesty that instead of sympathy I have empathy for you because I am basically going through the same thing. Its been going on for over a year. Started with a ANA of only 1:80 with a scleroderma pattern. The next time I came in it was 1:40 so they acted like that was the end of it (small town medical minds). I would not let them. Like you, I just want a diagnosis. My hands look a lot like yours but my knuckles are a constant grayish color, I have Raynauds and my palms are shiny and kinda rough and that is spreading upwards. My monster is my feet. My legs are huge and rock hard. They ache and burn. I am supposed to go back in in December but I plan on a “walk in” tomorrow. I am not going to keep living this way. My family is so non-supportive, I had an appointment with a scleroderma specialist in Houston and my parents and my husband were actually arguing about who was going to take me as neither one of them wanted too!! I just called and cancelled my appointment. I asked my mom if I had this disease would she make sure I went to Mayo or saw a sclero specialist and she said “well yeah I guess we would “have” to. I know how much I am a burden and chore now. Oh well, its nice to know someone out there knows how I feel. Take care and when you go for one of your coma sleeps think of me because I will probably be lyind down for one of mine also! irishbookfairy

]]> By: milet http://arimayasheart.com/2008/07/02/coma-sleep-with-a-side-of-hot-burning-legs-please/#comment-284 milet Fri, 15 Aug 2008 01:23:02 +0000 http://arimayasheart.com/?p=132#comment-284 came from chronic chick blog. i do hope you're feeling better already. unlike you, i don't really like plaquenil. i tried it once but it does not get me better rather its the opposite. its always prednisone for me. btw, i would like to ask you a favor. i hope its okay if i put your link up in my blog ? thanks. came from chronic chick blog. i do hope you’re feeling better already. unlike you, i don’t really like plaquenil. i tried it once but it does not get me better rather its the opposite. its always prednisone for me.

btw, i would like to ask you a favor. i hope its okay if i put your link up in my blog ?

thanks.

]]> By: Connie http://arimayasheart.com/2008/07/02/coma-sleep-with-a-side-of-hot-burning-legs-please/#comment-239 Connie Mon, 07 Jul 2008 04:43:21 +0000 http://arimayasheart.com/?p=132#comment-239 I was going to suggest taking photos of your hands if or when it happens next time. Then your doc can see for himself in case you don't have the symptoms when you see him. Isn't waiting wonderful? I'm playing my own waiting game too and I'm over it! I no longer wait for test results and just take them as they come. Hope you feel better, get answers soon & have some pain free days. I was going to suggest taking photos of your hands if or when it happens next time. Then your doc can see for himself in case you don’t have the symptoms when you see him.

Isn’t waiting wonderful? I’m playing my own waiting game too and I’m over it! I no longer wait for test results and just take them as they come.

Hope you feel better, get answers soon & have some pain free days.

]]> By: chronic chick http://arimayasheart.com/2008/07/02/coma-sleep-with-a-side-of-hot-burning-legs-please/#comment-235 chronic chick Fri, 04 Jul 2008 02:25:07 +0000 http://arimayasheart.com/?p=132#comment-235 Your hands look a lot like mine. Mine are real achy. I've been on plaquenil atleast 6 yrs its helped with my numbers too, the hair lose is a bad affect of it or is it the lupus. We'll have to compare hands- LOL- stay well :) Your hands look a lot like mine. Mine are real achy. I’ve been on plaquenil atleast 6 yrs its helped with my numbers too, the hair lose is a bad affect of it or is it the lupus. We’ll have to compare hands- LOL- stay well :)

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