View Full Version : New to Board, Not Disease

10-22-2009, 04:11 AM
Greetings & Salutations,
My name is Kerry, I'm 38, I live in the nether regions of New Jersey with my husband & our pets. I have SLE+ (sort of a Super Lupus) & my worst health issue which stems from my fouled up immune system is Chronic Urticaria/Angioedema which is so bad, not only because of the itchy/painful hives I get from head to toe, but from my going anaphylactic! So, I'm stuck taking megadoses of methyprenisolone & cellcept along with the usual ingredients of a lupus cocktail & even then, I still have days where I have to bump up the steroids & slam myself with Epi-pens.
I was a former member of a large lupus group on Yahoo! but it was getting too cliquey & a bit odd for me. There were things done there that were not cool & seriously, I am no fan of the "one ups of illness" that some groups seem to have, as if the sickest member wins or something. It sort of hurt to leave, because I considered a few folks there as good friends, so imagine my surprise when only a few have kept in touch with me. As I absolutely loathe drama queens & steer clear of synthetic sorts, I stayed away from ALL internet support groups for a few years, but figured it was time to reconnect with those who understand what life with lupus/autoimmune disease is like & also to try to connect with others who have anaphylactic chronic urticaria. Is there anyone here dealing with that? I'm lucky to have doctors who are the best specialists in their fields, but I have found that I don't really have anyone to connect with on a social level that can understand how difficult it is for those of us with lupus/autoimmune disease can be & how we can't plan ahead for a lot of things, some days you can't even plan for a few hours ahead, let alone weeks in advance.
OK, I've prattled on enough about myself & I may be a bit of a lurker, as I am still leary of internet support groups, but I'm sure that there are plenty of folks who will understand that.

10-22-2009, 07:18 AM
Hi Kerry,

Welcome to WHL. I am sure, that you will feel at home here, very soon. We have the nicest group of people here, everyone is caring and helpful. I felt at home here from day one, because everybody here understands, we are all going through the same things. If you have a question, there is always somebody who will give you an answer or tip.
I am looking foreward, to hear more about you.


10-22-2009, 08:36 AM
Hello Kerry,

I'm glad you decided to join us! I'm Rob, I was diagnosed with SLE in 2004, and I just live up the road from you in Maine. Sorry to hear that you had a bad experience at another site. I think you'll find this a very open group, and I believe we are pretty much clique free. You'll find plenty of serious stuff, but we also encourage fun, humorous threads, and we have some good social groups and even an arcade full of games. All Lupus and no play-well, you know what I mean.

Welcome to our group. Please make yourself at home!


10-22-2009, 09:10 AM
Hi Kerry and welcome i did not know that you could get hives from this. No one in my family has this diease but 2 of my children have had anafalactic schock (sorry about the spelling) and my son who is 36 stills gets bouts of giant hives and he does not know why. Bonita

10-22-2009, 05:52 PM
Hi Kerry, welcome to our group. this is a group of incredibly knowledgeable and compassionate members. I am not aware of any cliques, but this is my first and only forum to join. I have always felt welcomed here, and now i consider our members as part of my family. We have several very knowledgeable members about the different medical conditions that run along with lupus, so i know you will find a common thread very soon. One of our moderators, saysusie, who is exceptionally knowledgeable is on vacation, so she will not be able to respond for awhile, so please be patient. Again, welcome and i look forward to learning with you.

10-22-2009, 09:12 PM
Welcome to WHL, Kerry.

I don't think you'll find a better group than this forum. I, too, belonged to an online support group (for gastroparesis) and was turned off by the sugary sweet postings of some (trying to be supportive I suppose, but I felt like it was fake concern/care) and the cliques that seemed to develop. Hard to describe, but if you're not comfortable posting and don't believe in the sincerity of the members you aren't inclined to go back, eh?

There are people here from all over the world, all ages, colors and sizes. One thing's for sure, we're all happy that you're here!

10-24-2009, 10:48 PM
Hi Kerry!
I am Sandy. I live on LI, but my parents (dad and stepmom) live in Jackson so I am in SoJerz one weekend every 6 weeks or so. I don't have a formal Lupus dx, yet, but I have a history of Uticaria. Even Zyrtec does nothing for it. Usually my uticaria starts on my chest and moves to extremities. When that flares, I am just miserable in my own skin. :no:

I have a sarcoidosis dx and have been to other online support groups for that and Lupus (still think that's what I have) and have found the tendency you spoke about to "one-up" each other on there. I also found that there is a huge focus on the mortality and morbidity of these diseases. I love this site because all the bad things are dealt with head one, but here, live is lived, enjoyed and celebrated with encouragement, love and support.