New from Texas, not new to Lupus
I've been going under the dx of "undifferentiated" CTD essentially for about 11 years but it's been treated as Lupus. I've been on plaquenil as a disease modifying drug in that time and the rest of my meds have been solely ameliorative (pain meds, meds for various symptoms, etc.) I'm actually doing quite well but may have to come off the plaquenil soon (hope not) and wanted to check in here on that issue. I'll post about that elsewhere.
I am married, empty nesting, have one big blind mutt furbaby, and I am getting my masters in writing and publishing stories in my free time. Which I have quite a lot of since I was rather forced into early retirement. I'm 47 and live in the Houston area.
Let's see. Main problems are joint pain, rash, and a twisted sense of humor. I will try not to visit the latter on you too much. In fact, I probably won't be on here just a ton. But I miss the old days of alt.support.lupus and the even older days of the mailing lists of the mid-90s. Times have changed. So I am looking for a lupie home to come to now and then.
Recently went through a miserable experience with a couple of specialists who wanted to put me on a slab apparently - for no good reason that I can tell. Long story but all in all it appears they were WRONG. Which is fine with me. I have a wonderful rheumatologist who takes good care of me.
My amazing husband also takes good care of me and has been a blessing in this battle. A bit of a rarity in the chronic illness world, I think.
I guess that about covers it.
Last edited by KCat; 07-21-2011 at 07:40 AM.
Reason: typos - some writer, eh?
HI there! Welcome to WHL. I am really glad that you found us! It is great to know that you are doing well. We LOVE hearing that. I do hope that you find time to drop in from time to time because there is always a need for people who have lived with this disease for a long period of time. So many people come here scared that they are going to die it having another person with longevity is great.
I personally must say that I hope I get to see that twisted sense of humor show itself! It must be a Texas thing!
Anyway, make yourself at home and I really look forward to getting to know you
Welcome to WHL. I love your handle - you must be another cat lover, like me.
I have two kids in Texas - one in Houston and one in San Antonio. We lived in SA for 17 years, and we'll be going back there when my hubby gets done with school.
Like you, this AI disease stuff forced me into an early retirement, so I understand.
I also hope that you keep coming back to chat - you would be a good addition to our "family".
Hello Kcat, how nice to hear from you. This is a wonderful place to receive support. I'm so glad you have a good rheumy. I do as well. I'm also glad you have a good man. It means so much, especially on the bad days.
glad you found us.
your humour is welcome, and so are you.
Welcome to WHL and nice to hear your doing fine and got full support from your rheumo and hubby.
We love the humour lark on the site...it's what keeps we going half the time and it will be lovely to hear yours when your able to come on.
Welcome to WHL (:
It is quite supportive, and a great "lupie home" to be in. Personally, I would prefer that you *did* use your twisted sense of humor, but that's just me I love your description of your furbaby, by the by.
Anyway- just wanted to pop in and give you a quick welcome (: I'm undiagnosed as of yet, but feelin some lupus symptoms, which was why I joined. But, can't help much on the whole talking about meds thing.
Specialists and doctors can be idiots sometimes...but I'm glad you've got a great rheumy, and a better hubby to boot (:
Thanks for the welcome, everyone.
I do love cats but I'm more a dog freak. My dog is a Shar Pei x Rhodesian Ridgeback x Lab. Blind from birth. The furry love of my life. Well, hubby is rather furry as well. Not quite as much so. KCat comes from my nickname which is a pathetically sweet "KittyCat". "KillerCat" when I'm in a mood.
To Elo: I spent a lot of time wishing I had a definitive diagnosis. Then I was glad I didn't have one because my rheumatologist didn't like to give that dx unless really ugly symptoms popped up (kidney disease, pericarditis, etc.). She hated the way HMOs and PPOs would cut off patients with pre-existing conditions so she tried to avoid a full Lupus dx if at all possible. I could draw the conclusion then that if I wasn't sick enough to warrant that dx, then I wasn't "that sick." You know what I mean?
She is no longer taking insurance which makes it a bit of a hardship but also leaves her open to call this whatever she thinks it is which is the L word. And after all these years I'm okay with it now. It was kind of a shock this past Monday when she said something like, "Well, that's just the sort of thing that happens with Lupus." and I had to accept that she was talking about me. No more talking around it. It's still easier when I talk to family and friends to just call it "autoimmune disease." Sounds much less intimidating to me for some reason. Like "shell shock" is now called "Post-Traumatic Stress Disorder." Give it a long name and it's suddenly less scary. Softens the blow.
Anyway - glad I'm here and hope I can drop in a bit. School will be starting up again soon. This usually means I say I have less time but then end up having more time because I have to wait for the class bulletin board to load or need a break from the in-depth discussions about authorial intent which can get pretty exhausting (read: dull).