View Full Version : Hi all
11-23-2008, 03:12 PM
:D My name is Amy. I'm 44, teach art and drivers ed., and live near Phoenix.
I just got diagnosed with Lupus (SLE), Sjogrens, Hashimoto thyroiditis. What a relief! I thought I was just going nuts. For years I've tried to figure this out. My other doctor diagnosed me with "fevers of unknown origin," said I had rosacea, a sinus infection, etc.
Anyway, being diagnosed doesn't make me feel any different so I don't really know what to do with this info. Everybody I work with is tired all the time, because we're all teachers, so no sympathy for that!
I've been on plaquenil for months, and now the doctor put me on Azathioprine. I hope that doesn't make me more tired - although I've recently discovered that Circle K has "supercharged" coffee!
This is the most random disease. I don't even know how to respond when people ask how I feel. Sometimes I feel fine... mostly something aches, especially my head, but I am so used to feeling that way and carrying on with my life. I don't want to sound like a whiner, though, so what do I say, "I'm good! Where's the Ibuprofen?"
I'm Rob. I'm 40, and was diagnosed with SLE five years ago. I recently moved to Maine, after living for 15 years in Cave Creek just north of Phoenix. What part of the valley are you in? I still have a bunch of friends there, mostly in North Phoenix, and Tempe.
Isn't it strange how being diagnosed can be such a relief. It took me an awfully long time to figure out what was causing all my odd, seemingly unrelated symptoms. It didn't help being a guy either. My mother has SLE, but that just didn't register with me for the longest time. You say you don't feel any different. Not a bad thing. You're still you, though you'll have to make some adjustments along the way. Sounds like you are dealing with it all pretty well. Anyway, we're a pretty laid back group here, so make yourself at home. Welcome!
11-23-2008, 04:14 PM
Welcome to the site. My name is Kathy and I have SLE, Lupus along with several other auto-immune disorders as you will see by my signuature. I am taking Imuran (Aziathioprine), Plaquenil and Sulandack. The Imuran should not make you tired, but you will have to be careful about catching colds or getting infections, because this drug is an Immuno-suppressor. I have had Lupus just about all of my life. My doctor believes that I have had Lupus since the age of 5 years old. I will be 50 in December. You will learn what your limitations are and things like that and the biggest thing is to avoid stress if that is possible. Well I just wanted to welcome you to the site and I hope that you keep posting.
11-23-2008, 06:26 PM
Hi Amy and welcome,
I'm still waiting for diagnosis, I'm 48 yrs old, living in Nova Scotia Canadan.
My mother had lupus and my sister has it. I have an idiot for a rheumy and I'm on a waiting list for another rheumy who will actually run the proper tests.
I've had symptoms since I was 19 but my mother wasn't diagnosed for many years and I've just started putting two and two together for myself.
I'm much different than my sister. Since I found this board I have discovered that alot of my "quirky" problems are not so quirky, they are actually quite normal symptoms of lupus.
Rashes, mouth sores and other goodies.
It would be a relief to know one way or another for certain. I'm on plaquenil and arthrotec. They help quite alot. Took months for the plaquenil to finally kick in, but when it did it was worth the wait.
This is a great site ... full of friendly people who are willing to share informations.
11-23-2008, 06:35 PM
Hi Rob, Yes, I know where Cave Creek is! I live in Black Canyon City, but nobody has ever heard of that. I teach drivers ed and sometimes for fun I have the kids drive on Old Schoolhouse Road. It's hard to find a hilly road anywhere else.
Will you see this reply?
11-23-2008, 06:40 PM
That's funny that you say to avoid stress - I teach drivers ed to teens; and to avoid colds and whatnot - I teach art to elementary-school kids. The art job is full-time and I've been doing it for 16 years, so hopefully I am immune to all their illnesses (but I freak out when I find out one of them had head lice!).
I'm trying to avoid sunshine, but this is Phoenix, Arizona!!! Today the high was 78 deg. Beautiful.
11-23-2008, 06:44 PM
Hi sits in the corner,
I went to the rheumatologist years ago because I had bursitis in my shoulder and some achy finger joints. He was looking in my eyes and asked if they were dry. I thought, who cares? He then looked at my history and one sister has rheumatoid arthritis and the other has hashimoto thyroiditis so he made me keep coming back and having other tests. He referred me to an opthamologist for my eyes. I would never have known about lupus, but the dang doctor kept making me come back every couple of months.
There are so many symptoms that people have, it's unbelievable. Hang in there.
11-23-2008, 07:16 PM
I can see where it is impossible to avoid stress with your job. Believe me about the head lice, I freaked when my children caught it and boy I got rid of it as fast as I could.
What is weird about Lupus is the way that it creeps up on you and the symptoms are sometimes hard to recognize. I did not get diagnosed until I was 36 years old, because every single time I would seek help from the doctors I would get treated like a Hypochondriac or told that I was stressing needlessly etc. It was terrible. I nearly died before they diagnosed the Lupus as it started affecting my heart muscle and this is a very serious problem. When I got diagnosed and was finally able to see a Rheumatologist, the Rheumatologist told me that I have one of the most classic cases of Lupus that he had seen in years and that he believes that I have had it since the age of 5. It is sad that for years I had to suffer so badly due to bad doctors. I have a younger sister with it and an Aunt that passed from Lupus related heart disease. I guess that it is just the way it is. Oh well.
Hey there Amy,
I certainly have heard of Black Canyon City. I've spent quite a bit of time there actually. Spent many a long night at the Rock Springs Saloon. I have an old friend named Bev who bakes pies there for the restaurant. Jack Daniels Pecan Pie is the best. Do they still have "Hogs in Heat" every month? Giving driver Ed, I hope you don't have to teach them to drive up I-17 to Sunset Point. That hill is a bear.
You drive up Schoolhouse Road for Drivers Ed. My old house is just off of Schoolhouse. After all those hills take a right at the stop sign onto Fleming Springs, and another quick right onto Lone Mountain Road North. Do you teach at Black Mountain? Talk about a small world. I live near my family in Maine now, which is a good thing, but I still miss it there. Still have a bunch of friends there. 78 degrees there today? Right now, it's 15 degrees, and the wind chill is -5 here, Brrr. Anyway, it's good to talk to someone from my old home, I do miss it.
11-29-2008, 07:44 PM
welcome to the group
ive got lupus S.L.E
and a tendancey to clot
im on planqanil and iron tabs and warfrin
12-01-2008, 08:03 PM
Hi Amy and welcome;
It is nice to year that the Lupus has not made you feel like you got run over by a mac truck.
My name is Kim. I am a 37 year old mother of 3. I was diagnosed in 2003 after having joint pain, fatigue and edema to my entire body. My legs, arms and face are so swollen and my stomach looks like I am 20 months pregnant (and rock hard) from the swelling. These were my primary complaints.
I work in a pediatric ER and my doc hessitates to put me on immunosuppresants because of my job. She said it would be a death sentance with all that I am exposed to.
Here is a funny story for you. I went in to discharge one of my patients, and the mom told me that I should be at home with my feet up in my condition. She asked me when I was due and put her hands on my stomach. She then proceded to tell me she felt the baby move. I did not know what to say. I am not pregnant, but I did not know how to explain my condition, so I told her I was due in 2 weeks. It is now a joke at the nurses station and they have named my stomach "Ed". Short for edema.
Now, when I am having a bad flare day, I simply say I am in labor and everyone knows I feel lousy.
Good luck to you!! And I hope you keep feeling well.