View Full Version : Not new to lupus, but new to WHL.com, HI!

05-01-2005, 05:25 PM
My name is Deb, and I have been diagnosed with SLE, RA, and Fibromyalgia for about 10 years now. I only now am figuring out that all these things that constantly go wrong with me physically and yes, sometimes mentally, are all contributed to the lupus "thing". Thank God I found this site! I have felt so alone for so long and now I read about each one of you and say, "Wow!, that sounds just like me!" I try not to dwell on the negative and the pains, and try to be upbeat most of the time... which is kinda hard work. But I would love to hear from every one and I am a great nonjudgemental listener! I am married to a wonderful man who does his best to understand but just doesn't quite get it and I have a daughter in middle school who is a handful all by herself!
I wish everyone here health and happiness, but most of all hope!
I do have one question though....how in the world do you get to see a rheumatologist? They are few and far between here, and whenever I try to get an appointment it is 11-14months in the future. How ridiculous!
I just see my regular family doctor, and he treats per ailment, it works, I suppose. Anyway, let me know how you find these rare rheumys!
Talk to you soon....

05-02-2005, 05:50 AM
Hey Deb. Welcome to our home away from home!! :) So glad you found us but really wish you didn't have the need (as in didn't have Lupus!!) {{HUG}}
I too have a wonderful dh that is supportive and tries to understand but sometimes just doesn't "get it". And it's so hard to explain to someone else that hasn't been there. I think for us what helped was him talking to another guy whose wife has Lupus. Well that and the fact that he changed departments at work and was on his feet all day, and had a cold on top of it. He came home one day and said if this is how you feel most of the time then I am soooo sorry. I think that is the closest he'll ever come to getting it. (I hope so anyway, one of us should be healthy right?)
I have a son that will be Seven in a couple weeks. (WOW the time has flown!!) For me, my symptoms actually really started when I gave birth. I'd had a few things that were questionable growing up but it hit full force when I delivered him. I can't have any more kids but that really is a good thing considering how active and full of energy he is. Some days he wears me out just watching him LOL
I'm like you too, in that I TRY to stay positive. If you see my posts from last week tho, you'll notice that it was NOT a good week at all for me emotionally or otherwise. This week WILL be better!!
As for the rheumy, they are few here in North Florida too. I've been waiting since last September for my appt and it's not til July. Very frustrating but at least I have that coming up. Maybe you should schedule one anyway so you can at least be seen. It may take a while but it'll get there ya know? If you want, my email is listed so feel free to write. {{HUG}}} Hope you have a great week!!

05-02-2005, 06:42 AM
Thanks, TracyDawn, for the welcome. I too barely made it through the birth of my daughter, emergency c-section while I was on ICU. Docs told me never to get pregnant again. So Histy soon followed. Yeah, she's a wild one, fiesty and has too much energy for me to keep up. Glad I have one, and only one! Anyway, we all cope the best we know how, right!
Sounds like your husband is very supportive, great for you! It's ok that my husband doesn't quite get it, he tries, he reads about it, but there's that "well, you look okay" attitude still lingering. And he picks up the slack when I am just too exhausted to do much around the house. I suppose I should nominate him for Sainthood instead of worrying about him feeling my pain! :oops: Well, best health to you. I will be checking this site every day now that I found HOME!!!! :D

05-02-2005, 07:05 AM
YIKES!! Sounds like your delivery was a little worse than mine. ;) I had to be induced cause my bp shot up to 170/150. And I was so swollen by that time that I was wearing socks to work ( Went straight from work to the dr to the hospital LOL) I was told I'd never have kids at all so Bry is truly my miracle baby. :)
ARe you taking hormones? did you have a full hyst w/bso? There is a great site for hyst. support too at www.hystersisters.com I don't know what I would have done without them after mine.
Trust me, some days my dh is just as clueless as the rest of them. He tries but there are those days when I just want him to go away for hours and leave me alone LOL

05-03-2005, 03:23 AM
Hi Deb :lol:
As TracyDawn said, welcome...to our forum and to our family. As you can see, everyone here is supportive and understanding. We want you to know that you are not alone, we are here to help you as much as we can and to offer you comfort, information and support!!
Once Again

05-03-2005, 11:39 AM
Thanks Saysusie, appreciate the warm welcome. Now TracyDawn, no difficult birth is worse than the other, they are just difficult and SCARY, but looks like we both made it through okay....Oh, I know that sounds too simple, when it really wasn't. Thanks for the histy link, but I really didn't have trouble with it, yes, total, and no hormones, because I refuse to take hormones. Got to say though, those hot flashes are a major pain and I'm working on a good case of osteoarthritis, but some extra calcium and some herbal tea and I'm good to go. Take care all. I wish you strength and courage, but mostly health.

05-04-2005, 05:37 AM
Hi Deb,

I just found this site not too long ago myself. I have learned so much from reading other's experiences that it helped me understand some of the things happening with me are not all in my head!

I live in the New England area so finding a rheumy was not too hard and I personally think he is the best. I'm not only dealing with Lupus but have had type 1 diabetes for 35 years so having someone who understands both was very important for me. I feel very fortunate to have a great healthcare team. I do have family in Florida who are trying to get me to move but I think for right now I'm better off with the health care here.


05-04-2005, 08:47 AM
Nice to hear from you, appreciate it. I am originally from NJ but have been south for about 13 years now. I find it extremely difficult to find a good Dr. here, never mind the rheumatologist. I would have to agree with you, if you are happy with your healthcare team, you are sitting on a gold mine! Would you actually consider moving to hot, humid Fla. any way? Heat bothers me, not just the sun, the heat makes me ill.....how I long for long cold winters! Oh well, that's what air conditioning and a $250.oo electric bill are for! Take care of yourself and wishing you good health.

palmtree cindy
05-06-2005, 07:03 PM
Hi Deb,

my name is cindy and I am new to this site also, but like you have SLE, RA and FMS. I have read so many books on ra, fms, but then I picked up a book about lupus and could relate to all the pages. I see a rheumatologist, but it is hard to talk to him. In alot of books it talks about having a good relation with your rheum, but my guy is a know it all doc and when I tell him about pains I have or itches (I get itches on my legs) he just looks at me like I have bugs coming out my ears or dosn't say a thing. I live in Nev and their are only 3 rheum in the area, not alot to choose from.

cindy 8)

05-07-2005, 04:30 PM
Hi Cindy, nice to meet ya. Yes, I have no idea how anyone finds a good doc that they feel comfortable with....I have been searching for what, 10 years now :x Guess I will make do, especially reading these posts, they help clarify alot :D I hope you find this place enlightening as well.
Any time you want to write, my email is listed, I love to get mail and I actually answer it :wink: Hope you are well, take care....
Happy Mother's Day to all the Moms!