Wow, I am blown away by all the threads related to Lupus, Scleroderma, MCTD, ILD,Raynauds....Definately not alone, while I know this effects everyone differently the symtolagey is the same, and the doctors treatment the same, I used to come home from the doctor so upset I would get a Migrane for days, You see I have spent my whole life it seems with this dreaded illness, from the age of 8 i remember going to the hospitol to see my mom, who they thought had lupus and they obviously thought she had muscle problems hense the biopsys everywhere her legs,angkles, arms i mean they used my poor mom as a quinny, i resently found out she is in the scleroderma record books in toronto, so she obviously was very sick and let them do what ever, as back then docs were gods and no one questioned when my sister got sick we looked everything up and we used the blood tests to define what they were looking for, she was terrified and now i am, we have 6 family members and now my son and grandson, thats why my mom let the docs do all the stuff to her, she was on so much predisone it was i know now very deadly she died very young, but the fight still goes on now i will be in that same registery so they can learn from me to save my grandbabies. This dreaded illness is worse then the big C and no one gives a dam. Lupus, Scleroderma numbers are rising in Canada, the US, and in Europe......Someone must do more. Dont have the strength to do battle so i have decided to blog this way and contribute my knowledge in the hope it helps someone even it is only short lived...keep laughing and smileing God Bless
The following user gives a hug of support to mctdonna: luca689 (10-25-2012)
Hi, mctdonna. I disagree with only one thing in your post: I think posting is a way of doing battle! I'm very sorry to read about your mother's life being so badly affected and foreshortened. Is scleroderma the disease your mom had? And that your sister maybe has, or does have? And the one you yourself fear?
The reason I ask is, I only recently started posting on this particular board, and there may be others here who have it or fear getting it. If you want to find out, you could do any/all of the following:
1. Scan all the thread titles on this board (time-consuming, many pages!)
2. Try the search box. Type in "scleroderma", then opt to search just this board---or search ALL the boards.
3. Start a brand-new post, and include "Scleroderma" in the title to grab people's attention.
I hope you try any/all, and that you keep posting here. Bye for now. Sincerely, Vee
Hi. Here's a better (corrected) explanation of search. Sorry I didn't do a better job on my first try. Take good care, bye, Vee
To search ALL the boards, in the blue bar (it's right above the title of the board you're currently on) select "Advanced Search". A new screen comes up. Type key word(s) in the box in the upper left (e.g., scleroderma). Use the drop list to the right to define the extent of your search (the default value is already "all open boards").
To search only the board you're on, locate the page numbers towards the upper right of screen. Look right below for a hyperlink = "Search This Board", and select it. A pop-up box appears. Type in your key word(s), then choose "Show Threads" or "Show Posts". ("Threads" gets you whole entire threads that include posts with your search term, while "posts" brings up only those single posts, standalone, without the surrounding "thread".)