Here's a web site that has a lot of good info.... http://www.lupus.org/
This one is my fave to buy lupus stuff..... http://www.boutyoudontlooksick.com/
For those of you that don't know what lupus is....... It's an auto immune disease there's no known cause and no known cure. I'm not a lupus genius I my self am still learning about it as well as how to live with it.
Upon finding out I have lupus of course I had an overwhelming sense of doom..... My life is over!!! I thought, what about Corey he has no dad and now hes going to lose his mom too, I immediately started making his future plans depending on how long I will live. but after researching more I found I can live with this its just not going to be fun or easy. I had to make some MAJOR life changes in order to be able to function. no more tanning..... :*( (this has been the hardest adjustment for me) actually no more sun at all... I found a SPF 100 but it does not seem to be helping I still get a horrible rash that makes me look like a burn victim every time I go out in the sun.
it looks a LOT better than it was.
Ok wait I'm getting ahead of myself.... Let me start from the begging. The first question I am always asked is how did you know?
Welllll..... Back in November is a day I can pin point when I knew something was wrong. I was having leg pain in my quads ALL the time, at first I thought I was from line dancing (it is a really good work out) but then it became more persistent and sometimes soo bad I couldn't walk! So after a few months of this pain I decided it was time to go see the Dr. in January I finally went, the Dr gave me pain pills to deal with the pain until we could figure out what was wrong, so he sent me for a blood test. A week later I get a call......
My test came back positive for lupus...... There's no family history that I knew of so I jumped online and began researching. Come to find its genetic and some of the main triggers are the sun and stress. My life happens to be full of both of those right now!
I got my referral to go see the specialist in the mail and called to make an appt but they couldn't get me in till April...... APRIL!!!! That's 3 months away, what the hell am I supposed to do until then!?!?!? What am I supposed to do with this disease I know NOTHING about, this constant pain everyday? My skin falling off left and right? How am I supposed to function when I am sleeping 15 hours a day?
So I waited and waited and waited..... I had good days and bad days. Then finally my friend Heather makes me go to urgent care, the doctor there says he will give me a med pack (steroids) and a cream, just enough to get by until I can get into the specialist. And then.....
I get a call from the specialist, they have sooner appointments YAY!!! But wait.... Just a week earlier, Hey! That's fine with me one less week of pain. I FINALLY got in the end of march. I find my self at a Rheumatoid Arthritis Dr, and I am the youngest person there. (Sometimes I think about bringing a cane or a walker so I can fit in lol)
And it went like this.........
"So why are you here today?"
" I had a blood test that came back positive for lupus"
"Oh ok that might explain your rash" (it doesn't look like a "rash" to me more or less my skin is just not there... I thought you had to have skin to have a rash) "Oh yea and your skin is very red, let me see your hands, oh yes very typical signs of lupus, how it skips the joint on your fingers" (Lets not point out the obvious or anything, but I'm pretty sure I was well aware of my skin issues...).
" I also have sores in my mouth, it makes it really hard to brush my teeth or even eat"
"Oh! let me see, oh I need a flashlight"
We then had to move to a room that had a flash light in it (she now carries one in her pocket)
"Oh yes, mmmhhhmmm mmhhhmmm that's really bad, you have a huge ulcer in your mouth" (tell me something I didn't know) "Can I take pictures of your hands and mouth? You have very classic signs of lupus" (Yes I am now a Circus freak!)
This is when I begin to cry... I knew I had lupus, but I had also heard that it was very hard to diagnose because lupus is a lot like other diseases, there was always a slight chance that the doctor was wrong. I was still holding on the that slight chance, and I when I heard those words that slight chance slipped from my fingers and was GONE.
This is the "rash" on my hands.
This is how my lips look when they are inflamed, no need for implants when you have lupus :)
"Oh don't cry, you can live with this" (I thought this was a funny thing to say, you just told me I have a horrible disease and I'm NOT supposed to cry? Yes I know I can live with it, but I don't want to.... I want to hear that there is a cure, or some surgery and it will all be better and I can go back to my "normal" life)
Then she proceeds to test how bad it has affected my joints and such, so I have to walk back and forth across the room, lay on the table and she twists an turns my legs in very uncomfortable positions, and checks my reflexes which I seem to have not much of any more.
Then she sends me off with lab sheets and perscriptions and tells me to come back in a week.
At the lab....... they took 13 viles of blood.
The doc started me on 30mg of prendisone a day... the first week was ROUGH, I went from sleeping all day to not sleeping at all, a side effect of the meds (not sure which one I like better) I also felt super whacked out, I guess how a crackhead would feel, I constantly felt like I needed to be doing something.
For my second appt...... She hadn't gotten all my lab results yet so she couldn't tell me much, she just wanted x-rays of all my joints so I went the next week to do that and then she wanted me to come back in 2 weeks and get another blood test a week before I came in.
At the lab.... second blood test wasn't soo bad, just 6 viles of blood this time.
My last follow up appt....... my doctor doesn't like how my skin is looking and she said my counts are low so she doubled my meds to 60mg of prendisone and 400 mg of plaquinil a day (its used to treat malaria or lupus) Here's to hoping this works I have another appt in a month.
That's my life with lupus soo far...... More updates to come, maybe next time I will share some of the horrible death by lupus stories people find necessary to share with me as if having lupus isn't depressing enough. I don't quite want to think about how I am going to die just yet.
