Monday, May 3, 2010

Living with Lupus

My story starts a long time ago...but I was diagnosed in 1991 with severe Rheumatoid Arthritis and Lupus.I went to the dr because I had a huge knee and felt like I had just attended gym class after a summer break.I hurt with every step I took.I had surgery and then felt better.While doing the tests they looked back and as a child of 5/6 I had alot of joint pain.After more blood work and test they(the doctors) assumed it was Juvenile Rheumatoid ArthritisSee about JRA here
I got better for some time and then worse again.All the while I would have good days and bad ones.Some days I could walk and some days it was painfull.I had many knee surgerys and many many times they would drain my knees weekly taking as much as 230cc a time.
After the birth of my daughter in 1996 things went really south.
It was February 1997 and I had been having alot more bad days than good ones.Finally one day I was in bed and it became so painfull to walk I just did not.I had a maid that came in and helped and my Dad would take me to all my appointments.There were alot of stressful things going on at the same time that just made it worse.I was way over medicated and nothing was working.I would still have days where I could go out and shop for food but it was hard.
Then I got Remicade and it was like a miracle.I could walk again and I was human again!
I was a human that could ride a bike again and walk.It was like nothing happened.
Now I am more aware of things and after I had Mack in 2003 I was down with a flare for about 6 months.I am lucky the RA flares more than the Lupus but they both hurt.
I am now 43 and I cannot open a coke bottle or water bottle.I do not usually shop for food alone as I cannot lift heavy bags.I had a bad time in 2005/2006 and in 2007 I got pregnant with our miracle.If you are a regular you know her as Stinky or Makayla.She is 2 and keeps me moving.
A PSA about Lupus is although we done "look" sick we might be hurting so bad you wont see it.
I think the most hurtful thing ever said to me was while I lived stateside and had a handicap sticker.I was have a pretty good day and was walking but it was hurting and someone said "Ohh are we pretending to be handicaped today?"
Some people just do not under stand it.
Our daughter Mack is dealing with RA issues since last year.I really really hope she does not get bad like me.
I am ok for the most part even though I am having a flare.I take Enbrel 2 times a week now.I think all the pain and surgerys I have had make me stronger and more determined not to give up.
I will not let it win EVER.

1 comment:

Keli said...

I do not know much about RA, but I have a friend with Lupus and I know the pain she endures, especially when it flares up. I hope you feel better really soon.