Thursday, April 25, 2013

Kicked to the curb...

Well I am not sure if you have ever heard the saying "Kicked to the curb" but that is what I felt like after talking with my new surgeon who did my last repair on my left knee cap after having a total knee replacement last year.  I decided to get a new surgeon at the beginning of the year with the hopes that he would have fresh ideas for this lupus girl.  Before my surgery this year my knee cap was totally sliding off my knee about every five or ten minutes which tore ligaments and even did damage to my tendon.  Upon first sight of my knee my new surgeon was terribly concerned and said he was going to do surgery and help me.  Well ten weeks after my surgery my knee cap has started to slip again.  I was so very careful during my healing process and did absolutely nothing wrong but my result was not what my doctor wanted to see.  At my last visit he told me to wear a brace that was specifically designed to hold the knee cap in place but of course they didn't have my size available.  So this led me to do my own shopping for a brace.  I noticed that my knee cap was progressively getting worse and I called the surgeon's office.  I was told by his nurse that there was nothing else they could do for me.  They wished they could work a miracle on me but with my lupus they feel there is no solution.  Before the nurse hung up she said "try and take it easy".  Then there was silence. Kicked to the curb I thought.  Get out of their way because they had other patients that they could help and I was just bringing everyone down.

I was hoping for some kind of recommendation from a professional but here I am on my own.  I still don't think lupus is understood by most doctors and they have no idea the damage that this disease can do to joints and ligaments.  I have no one to share my feelings with because I don't have lupus friends. So really there is little feedback I can get from someone who is experiencing the same things.
After a day of crying I shake it off and am back to trying to help myself.  Searching for a surgeon that might have experience with lupus patients.  So far no luck.

Am I just kidding myself that there is such a person?  I don't know but lupus patients are out here in the real world and they just can't ignore us any more.  We need help just like any other disease.

Please feel free to leave a comment or maybe you have a story you would like to share...
Thanks for listening.

1 comment:

  1. So sorry you are going through this... I too suffer with knee issues... I had scope surgery in feb. been doing PT 3 times a week. They just told me my kneecap is crooked.. I go to Rheumy today haven't seen her since surgery cause I haven't felt like going so she isn't letting me refill my lupus meds.....what is wrong with this picture?!??!?!i think I will have to have more knee surgery. Both knees are so painful. When I leave PT I'm practically crippled. Lets keep in touch. We both need a shoulder��


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