SherryK
If anyone can help you it is Dr. Petri at Johns Hopkins! She is great! I saw her when I was first diagnosed. Stay strong and educate yourself on the matter. It will give you the what you need to be your own Medical Advocate.
Please let us know how your visit goes!
Best wishes…Deenie
Hi sherry,I have had lupus since I was a kid,my biological mother said I was always a sick child,she couldn’t handle it…so there for I couldn’t handle it…My mother didn’t want to be bothered with it…It cramped her style…so on top of having lupus I grieved for a mother that didn’t want me,That made me afraid to tell anyone there was anything wrong with me,I spent yrs in denial…even when I couldn’t get out of bed I would say,"oh,I have the flu!!I grew up feeling shame for having lupus.I spent yrs trying to hide from it,I would pretend I didn’t have it…"Now Im better about dealing with it…I can’t hide anymore,It won’t let me…everyone knows …do I like sharing the fact that I have lupus so bad that I were braces on both hands to do basic things people take for granted ?? "Hell No!! I started buying every book I could find on lupus, I have tried to change my life style to make my lupus happy…and Im trying to boost my vitamin D level,Because I live in a very cold and rainy climate and I have read all of Ann’s research that she has posted on this site about vitamin D levels and auto immune disorders."my rumy has me on prescription strength now…Im in a very bad lupus flair and have been spending a lot of time trying to rest…This is a great place to just read what others go through,so you don’t feel like your going crazy…The Internet has a lot of information on lupus,And you might be able to find a support group in your area,the nearest support group for me is 40 miles one way,I have not attended a meeting yet.I would like to sometime, “take care of yourself sherry”…everyone deals with it differently…The cool thing about this site is you can vent all you want and know one judges you…ha!ha!..take care,celeste
Hello SherryK, hope that this site help you find comfort !! We are here to support one another and to vent(when you need to), so welcome yourself and know that there are people that knows what, and how you are feeling when others don’t- smile Remember you can express Whatever here without having pressure!! Yes , it is hard at times to face reality about this Lupus stuff , find yourself to be strong and find the things of this as a base to rest and take in as knowledge as you can about this in some kind of way and keep note of the things that make you get tired quick(that helps to manage the flares ), also rest is the main factor -Don’t overdue things !! Take it for the moment in which you are able to do things- in other words do light weight things at your pace!!! Well hope this helps in comfronting you and you enjoy us that are “Living with Lupus”…Beverly L.
I contacted the Georgia Chapter and I met with a young lady who brought me some info that I could read about Lupus. I was diagnosed 2 years ago and am turning 64 in June. I then went out and got some books to read more about the disease. The book I like and still read is{ The Lupus Book, Fourth Edition by Daniel J. Wallace M.D. Pick it up and read it.
Hello everyone, I wanted to say thank you for all of the wonderful support and information you gave me. i’m sorry I haven’t replyed sooner, but I did read every one of your responses. I am batteling a pretty significant episode of depression right now, but i feel like the fog might be beginning to lift. I will see Dr Petri tomorrow and get more answers, and I plan to follow to call my neurologist to follow uo with him also. thanks again everyone!!!
that darn depression always sneaks in on us.
sending you happy thoughts and joy today....
-cynthia
SherryK said:
Hello everyone, I wanted to say thank you for all of the wonderful support and information you gave me. i'm sorry I haven't replyed sooner, but I did read every one of your responses. I am batteling a pretty significant episode of depression right now, but i feel like the fog might be beginning to lift. I will see Dr Petri tomorrow and get more answers, and I plan to follow to call my neurologist to follow uo with him also. thanks again everyone!!!!!!
You're not alone! I'd like to offer you some support. Keep looking to your drs. for help I'm gad the fog is starting to lift for you
Freigtliner
LIFEwithLupus said:
that darn depression always sneaks in on us.
sending you happy thoughts and joy today....
-cynthia
SherryK said:Hello everyone, I wanted to say thank you for all of the wonderful support and information you gave me. i'm sorry I haven't replyed sooner, but I did read every one of your responses. I am batteling a pretty significant episode of depression right now, but i feel like the fog might be beginning to lift. I will see Dr Petri tomorrow and get more answers, and I plan to follow to call my neurologist to follow uo with him also. thanks again everyone!!!!!!
i love it!
Ann A. said:
I was newly dx 46 years ago. My life has been good. Not as much running around as many but then somethings require people who stay put. I finished my education, had a career, and raised my kids. Starting a new career at age 66. Life is still good.
Hi, remember things will get better soon and don’t forget to breath…Beverly L.
Hello Grace. I also have a Bullous Condition labeled Bullous Lupus/EBA. How is your bullous condition going? Are you near remission?
Bozz63 said:
Hi, Im Grace, was diagnosed with SLE June 2000 va ans machine.
I agree with LIFEwithLupus, now there are many social groups etc.
Do not be scared it wilp cause you to not get into remission.
It is scary of not knowing, especially flares. A flare consist of many, but basically you just do not feel well.
There is so much that can follow, i have bullous phemphigoid, RA, Rynards etc.
But you have a great support group.
You mqy want to look at lupus fb. Lupus Cloud is my fav on fb. So posative, Posatively Living with Lupus, Etc have me glued to my fb