When I ws 17years old, I found out that I had Lupus and I'm bipolar. I've always been a loner, so natually deppression make come from time to time, but I was 17 and untouchable, I went into to the hospital on August 9,2002, one night after work at disneyland for severe leg swelling, on August 13th ( my 18th B-day)I was released from the hospital, but not b4 my doctor said that I was losing to much protien in my left kiddney and that I have Lupus. Unfortunately it took til I was 23 and pregnant with my son, to accept that I may really have a problem. I was blessed to have a complications free pregnancy aside from being on bed rest 6 months into the pregnancy due to swelling.
When my son was born back in 07' that's when i started having really bad flare ups.
I began being overly anxious, moody, very fatigue, and having lower back pain.
On Jan.10th 2009, I woke up unable to move my feet, and straighten out my fingers.
I'm a single parent, and at the moment I realized that if I didn't do something quick I might be putting my son at risk of being put into child services.
I finally went to see an R.A. specialist, who perscribed the following meds: predisone, altace, pilocarpine, & hydroxychloroquine. My next step is having a kiddney biospy.
Since January, things have really went down hill, I've lost my job, due to not being able to perform simple job tasks, because I'm always in so much pain,and my r.a. doctor saids that I should file for disability.
The altace medication that was perscribed to me, made me feel faint all the time so I stopped taking it about a month ago on my own. Although the other medications do seem to be working cause i'm not in any pain, for some reason, now i'm even more swolen in my legs and feet. So much so, that I can sit or stand for long periods of time, nor can I bend over or lift to much of anything, other than my son.
What I need to know is, how can i make the swelling go away. My legs and feet dont look the same anymore, there always burning, and everyday they look a bit bigger. When I go to the hospital about it they always tell me to just elevate my legs and feet, which doesnt help,and makes them hurt even more. This may sound silly, but my fear is that I'm gonna wake up go to the hospital and the doctor will say the only thing they can do is cut my legs off, because the swelling is too out of control. I'll be 25 in August, and I cant imagine not being able to use my legs.
THE LAST TIME I SAW MY DOCTOR WAS RIGHT B4 I LOST MY JOB AT THE END OF MARCH,I FOUND OUT THAT I HAVE A BLOOD CLOT IN MY LUNGS, AND MY DOCTOR TOLD ME THAT IF I DIDN'T GET MY LUPUS UNDER CONTROL, I WOULDN'T BE AROUND BY THE TIME I'M 28. THAT'S 4 YEARS FROM NOW.
Being bipolar, I get really down about it, and become really angry. I'M CONSTANTLY WONDERING AND WORRYING IF TODAY IS GONNA BE THE DAY THAT MY KIDDNEYS SHUT DOWN. I've even thought, that dying would be easier than living a life where I'm so dibilated. But then i THINK ABOUT MY SON, AND i SAY THAT i HAVE TO GET BETTER FOR HIM. BUT HOW CAN I GET BETTER. MY MEDICATION CITALOPRAM, HELPS TO KEEP ME LEVELED, BUT NOW THAT I DONT HAVE MEDICAL, AND NO JOB, I CANT EVEN AFFORD TO PAY FOR MY MEDS. I FEEL LIKE I'M AT THE TUNNEL I JUST CANT SEE MY WAY TO THE OTHER SIDE.
Lupus is such a horrible disease and it can be extremely hard to cope with but with support it makes it a little easier...Anything you need just remember you have another "family" here to come to!
