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carlau
04-04-2005, 06:47 PM
hi Loddie!
your post makes me sad and happy at the same time. sad because i identify so much with you- ot rbings back so manyu feelings. and happy because i am better now, and i look good again and i have the most wonderful boyfriend anyone could ever ask for- and i too thought noone could ever want me againnot only because i loked awful butbecause i was "damaged goods"
but you know our illness makes us more human and more compassionate. kind of like the velveteen rabbit, who became real after being loved- we can become human from struggle...
i also stayed alive in the hospital because i knew it would devastate my parents if i did not. i so relate to you!
did you look at the lupus site to see if there are chapters near you?
lupus foundation...
i put together my own support group with seeveral others in my town because the lpus group in my hometown was too formal and closed minded to alternative medicine. and would not talk about emotions!
so don't be afraid to take charge of what you're able to take charge of when it comes to your own care.
there are tons of alternative medicine things out there some mroe useful than others but if you care to chat ('http://www.enhancemysearch.com/admin/results.php?q=Chat&id=25')about them please let me know and i'll babble on and on.
it helped me reduce my pain- as i don't have a dr who will prescribe narcotics, i needed something besides advil so i could sleep at night in less or no pain- and also has helped me ween off the meds, and i'm totally off prednisone for 2 years now. (i hate prednisone... don't we all?!!!) and i was on 40mg for several months, so i was taking a lot and am now taking ZERO and i have my face and my hair back :)
there is hope!
i hoep you stick around
Carla

Saysusie
04-05-2005, 07:40 PM
Hi Lodie :lol:

Welcome to our forum and to our family. Having lost a child to this disease and having fought this disease myself for so many years, I can empathize with you on so many levels.
I, too, was hospitalized for exactly 13 days and my family was so afraid that I was going to give up and exit this mortal world. You are so very lucky to have your parents close to you and to have their love and support. And, in turn, they are so blessed to have you near to them and to have your love and support.
I know how frightening, depressing and gloomy this disease can be and, yes, it is a constant struggle just to maintain a semblance of a normal life. But, you must know how valuable you are and that you are not alone!!
Like Carlau said, do not give up hope! Being a lupie makes us so much more compassionate and this makes us so much more of a treasure to someone who appreciates that...and believe, that someone will recognize you as the loving, compassionate, intelligent, giving woman that you are. I recognize it and I am so sure that I am not alone in seeing it!
Please know that we are here for you, that you are not alone, that we want to provide you with as much comfort and support as you need!!
Stay Strong
Peace and Blessings
Saysusie