Lupus Member Introductions

Lupus
#33

Hello Y'all!

It's so interesting to share your posts and come to understand your feelings. I really respect the effort and energy I feel here. You know, I've had lupus (SLE) since Moses wore papyrus diapers and despite some mighty rough and scary experiences, I'm still kicking up dust in Ol' Wolfie's face.

Most of us have a pretty tough time at least off and on and, yes, some of us do die young but more and more of us are living long enough to get ornery and some stick around to give their great-grand-kids something to roll their eyes about.

I've done a lot of medical research through the eons and learned that again and again, nutrition  comes up as a major factor in how well we live and how long. Why, just the other day Hippocrates and I were discussing diet - hmm, no, I guess that was quite a while back - but it's been that long that nutrition was known to make a difference. It's just taking all this time for modern medicine to come to agree.

If you want, you can check out my profile for links to nutrition information. Guess what - chocolate, especially dark - is A-OK as long as we don't clean out the candy store in one trip.

 

I'd love to hear what you have to say about this info so i'll be keeping an eye out for posts. Plus, you can always leave a message at my own CarePlace page. If i can be helpful to you in any way, just give a holler and i'll give a hoot!

A Loony Life-long Lupie,

Shar 

 

 

#35

I am a 38-year-old single mother who had been living with Lupus since agae 19.

#36

I am lupus sufferer too and having my own groups too… joining this groups could help me learn more…

#37

I have terminal lupus SLE, with limitedtime left.

#38

Hello my name is Windy and I have had Lupus for 20 years now. I am always looking for better ways to treat this desease. I am looking to build friendships and to talk with other people but the things that they have learned along the way. I would maybe at some point like to find a group that meets in person so that we can share different things.

#39

HELLO EVERYONE, MY NAME IS GINGER. I AM A 44 YR OLD FEMALE WHO HAS LUPUS SLE, RAYNAUDS, SJHORENS, STEROID INDUCED DIABETES, AND ANTIPHOSOLIPID ANTIBODY. THIS IS REALLY HARD TO DEAL WITH AT TIMES BUT I HAVE LEARNED THAT TALKING WITH OTHERS WHO HAVE SOMETHING IN COMMON AND DISCUSSING DIFFERENT MEDICATIONS DO HELP AND GIVE US SOME NEW IDEAS. I WAS DIAGNOSED IN OCT 03 AND WAS FORCED OUT OF THE TEACHING FIELD DUE TO THE ILLNESS. MY YAHOO ID IS PINKSUEDE1962@YAHOO AND PLEASE FEEL FREE TO EMAIL ME IN THE GROUP OR JUST TO MY EMAIL. I DO LOOK FORWARD TO MEETING SOME GREAT PEOPLE AND I HAVE ALREADY BEEN BLESSED WITH MANY GREAT PEOPLE IN THE YAHOO LUPUS SUPPORT GROUP. IT IS GREAT TO BE ABLE TO HELP EACH OTHER. HOPE EVERYONE HAS MANY GOOD DAYS. GINGER CHRISTIE

#40

I have Lupus , it took 15 years to get a true diagnosis, and I am living with it I feel very well now,Thanks for sending the link David.,Lindy

#41

My name is April. I have Lupus. I was finally diagnosed March of 2005. After many tests. My husband and I as well as our children are still trying to cope with this and are still learning about this Lupus Disease. I know that it has a tremendous affect on me but it also has been very hard on my Family as well. I would really enjoy getting to know others that I could speak with and hopefully learn more on how to better myself as well as help my family with this.

#42

Hi,
My name is Nicole and I am 33/female. I live in the Chicagoland area. I was diagnosed with Lupus three years ago.
I have mild symptoms of my disease, thankfully.

#43

I have had 8 strokes from a car accident. ( the day after) Ever since this, I have had pericarditis 3 times and pleurisy 5 times and pneumonia 2 times. I am very tired all the time. My TSH was off and my growth hormone, and some other stuff to do with my pituitary gland. The docs came to the conclusion that I may have a tumor. ( I was also leaking breast milk and I had a hysterectomy) Did an MRI and they said no tumor. Been taking plaquenil and doing better and sinthroid 75 mcgs. Now I have a vitamin D deficiency! What the heck? It is suppose to be 40 and it is 15. I drink milk, I eat icecream, even though I am lactose intollerant. I eat cheese too. I get sun. Not much because it makes me blister because of my meds ( I take 22 pills a day) I see a rheumatologist who has been playing with me for two years. He says he doesn’t have enough to go on. An ANA came out negative but all the TSH and other thyroid tests came out normal too that he ran and then two months later they came out all screwed up. I wish I knew what to do. Do I find someone else? What do I do?

#44

I was recentlly diagnosed with SLE Lupus. I am here to learn more about this condition, how to live with it and to meet others with Lupus as well.

#45

I am a 62 year old female, DX with Lupus and Fibro since
1983…

My main problem is trying to figure out, Now that I am “aging” if my body changes and pain are old age
setting in or one of my illnesses…

I am hoping to meet with peeps perhaps in this same
category…

I still have a lot to learn and I also have a lot to share!!

Thanks!
Peace…Dawn in Carolina

#46

Hi all, am a “Multiple” Lupus sle, narcolepsey,antiphospholipid etc etc , you know the route! Am in a remission and am great, loving life for as long as I can

#47

I was diagnosed with Lupus in December 2006. Upon researching this disease I now know I have suffered with it since I was a child. Especially since my late teens. I was hopistalized in Oct last year for 5 days with butterfly rash and extreme pain and fevers of 103. They did not diagnose me until they did skin biopsy’s in Dec. I am on Plaquenil. For the last 2 weeks I have had the worst headache. The Dr. perscribed Lortab because it was so bad. That did not even help yesterday. I want to get to know more people with the same problems and learn more about it.

Elsie

#48

I want to join cause I have lupus myself. I want to learn more about lupus.

#49

I was dx’d 4 years ago and i would love to meet more with it.

#50

My wife may have it.

#51

I was diagnosed with Systemic Lupus in October 1992. Six months later I was diagnosed with Fibromyalgia. At the present time I am having a hard time dealing with this stupid disease. I am getting a second opinion tomorrow from a rheumatologist in another city. I feel my present rheumatologist just is not giving me adequate pain control and I do not feel my Lupus is under control. I feel my health is going down hill fast and my present rheumatologist just does not seem to be taking me seriously. I am hoping this new rheumatologist will be able to help me.

#52

I was diagnosed with lupus in 1997. Earlier in 1993 I had a back injury, car was totaled in 97 and etc…until I retired in 2000. I recently started parttime work and enjoy it! I hate taking pain medicine but I will if I desperately need it. I just want to communicate with people who understand where I’m at. I also have depression probably since the age of 12 but undiagnosed until I was 26. Oh, I’m a former USPS person.

#53

I’ve been diagnosed with systemic lupus and I already have arthuritis pretty bad. My legs hurt and lower back just aches, all the time. I stay tired all the time.