View Full Version : Newbie alert :)
07-28-2007, 02:31 AM
Hi I'm kim a 35 yr ld mom of two(15s&7d) who was recently diagnosed with SLE and SS overlap after 18 months or so of really bad health then the summer from heck!Very angry at first but I knew something was not right with my body but did not know what was wrong.....so now I have name and it was WHAT?!?!?! but the more I read about this disease I am like oh yeah-the dr thinks I have had it for many years...I have just always hated to go because they never found anything-Oh its probably early RA because so many joint problems(lots in my family)...but the last few months were horrid..and I needed answers...now I have them.I have a great support team and a fabulous dr. and rheumy.I just kick myself in the butt-because my dr said about 9 mo. ago after some labs-I want you to go to rheumy because I think this is possibly Lupus-was alot of hand,joint,swelling,fever-not alot of fatigue then.I went in dec. and put of the labs until it was so bad I couldn't walk...I'm so stupid...I was like well its not bothering me now I'll wait awhile...idiot..guess what! now its sure as heck bothering me!LOL!Could've been on the plaq coulda allready been feeling relief...coulda shoulda woulda..isn't it an interesting situation we put ourselves in...so I have been taking 40mg steroids and the plaq tues will be two weeks-I hate pred.it makes me feel like I am speeding my wee little brain out-and absolutely kills my appetite-I hadn't noticed the "moon" but the dr said wed "oh your starting to get a little puffy...guess in reality the slender,willowy me that I see in the mirror is a tad distorted:)...yes thats me trying to giggle I'm almost 5'11 an weigh about 165(AHA-I cant believe I put that out there)I am not now nor have I ever been "WILLOWY"...so I would love to hear from you guys..like I said hubs is great kids are trying but sometimes its lonesome..and I don't always wanna "talk sick"to my friends...I've always been a pretty upbeat and quick witted person so that is what they expect not someone who was so tired she needed help out of the tub..or wanted to sit and cry because it hurts just to get up and make your daughter a bowl of cereal but then when you do cry...no tears come because they don't work right either...So i shall end my novella hope to hear from bunches of youguys soon..thanks for taking some time out of your day to step into mine...
I hope you are enjoying better health and no rain...I was up at 4 and it is absolutely POURING down here and has been for the last hour and a half-I left my windows down in the car-had to run out in my jammies-I was graceful!A GAZELLE!OK... no I wasn't! I was a hunkered up hunched over slow moving turtle who had to sit in a puddle cause the leather doesnt soak up water and I sat there and thought HMMMM-its going to be a glorious day!!!
07-28-2007, 07:15 AM
welcome Kim, if you have questions that need to be answered, there are some very knowlegdable people on these forums that can help you, as far as the rain and clouds, I can only hope for them because then i can get out and move around, as many lupus sufferers do, i hide from the sun for the most part and only go out with copious amounts of sunscreen or special clothing, I really enjoy heavy cloud or rainy days as it doesnt make my skin burn or nauseate me,
after a while of "not looking sick" friends and extended family tend to forget you are sick so sometimes it feels like its not worth telling the in the first place, and when you do tell them it seems like they all have a sure cure, so i can understand how you dont want to tell your friends
BUT!! there is a website called www.butyoudontlooksick.com that has a blog called the "spoon theory" that you should read and share with you closet friends, I hope the plaq kicks in soon, i start it also in a couple of days
07-28-2007, 10:37 AM
Hello Kim and welcome to our family :lol:
As Teroid said, we Lupies tend to live for those rainy and cloudy days so that we can go outdoors. I live in the High Desert in Southern California and the sun here is relentless (Imagine Arizona sun & heat multiplied by 5!). The temperature has been in the triple digits consistently for weeks now. I am praying for cloud cover and rain (lol)
Like many of us, you suffered with Lupus symptoms for many years before being diagnosed. We have all said, once we were diagnosed, "Wow, that explains the aches and pains that I dealt with in High School and never knew what it was about!" There is, also, nothing unusual about not wanting to see a doctor when you are feeling relatively ok. Most of us have also, "Been ther e ~ Done That!". So, don't be too hard on yourself.
The Plaquenil will take some time before you really start to see its benefits, but for most, it has proven to be quite helpful. I, too, hope that you start to feel better once your medications kick in. In the meantime, we are all here to help you as much as we can and for as long as you feel that you need it!
You Are Not Alone!
Peace and Blessings
Pretti in Pink
07-28-2007, 05:18 PM
You've joined a great cyber family that welcomes you with not only open arms but great knowledge and most of all support. There are so many people here that have survived so much that they have valuable advice.
So please don't ever feel like you're alone because we're all here.
07-28-2007, 07:08 PM
Thanks for the welcome guys!The rain did turn out great-it stayed cloudy all day and my 7 yr old daughter and I went to the park and played in mud puddles-came home and as an added bonus became great safari hunters and managed to snare ourselves a "rare" breed of tree frog in a butter bowl...we stared at him he stared at us..then we set him free in the "jungle" of the yard....So it all turned out well:)
08-04-2007, 08:26 AM
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
Keep well and God bless! :)
08-05-2007, 05:11 AM
Welcome, Kim. Loved your posts - the story about the rainy day with your daughter! (We're in a middle of a long drought here in Minnesota - Lake Superior is at it's lowest point since the 1930's.) Don't beat yourself up about not following through with doctor visits at first. No one wants to face a diagnosis of lupus or Sjogren's. I think a lot of us probably had the disease long before diagnosis - explains a lot of 'mystery' ailments, right? The thing is, now you can learn to take control of your illness, or at least learn to live successfully with it. That's what's so great about this forum. There are a lot of folks here who can help you learn how to do that. Glad you found your way here, and I know you'll be glad you did. Welcome again!