Looking For A Surgeon

Did you know that it is almost impossible to find an orthopedic surgeon that specializes in patients with autoimmune diseases?  For the last week it has been my mission to find an orthopedic surgeon who might really understand lupus.   I live in St. Louis, MO and I was certain I would find one at Wash University Hospital or at least maybe a referral to go to another hospital in a different state.  I even emailed the Lupus Foundation and they really didn't have anyone in mind at all.
This is why it is so important for us to spread the word about Lupus.  Most doctors know of it but don't really understand what it is capable of doing to our bodies. 
My lupus is definitely taking its toll on my joints, ligaments and quad tendon.  This is what I have found that applies so much to me...

Why are joints affected by lupus?
As part of the inflammation involved in active lupus, the thin membrane of connective tissue called the synovium that lines certain joint spaces (for example, in the knees, hands, hips) grows and thickens. This change in size and associated inflammation causes pain and swelling not only in the joints but in the tendons and fluid-filled sacs called bursae that normally serve to reduce friction between body tissues. Connective tissue inflammation also can prompt the release of chemicals capable of eroding bone or destroying cartilage.

I have had seven surgeries on both of my knees in the last four years.  Some were full knee replacements and then the rest were revisions or some tearing going on in my knees.  One day I actually brought in something for my surgeon just to take a look at regarding lupus and he told me he didn't have time to read anything I brought in.

I really think surgeons mean well but if you are going to look like you are going to be a returning customer then they want to get rid of you.  If you can't be a success story for them then they want nothing else to do with you.

Let's face it Lupus isn't going to go away any time soon so l say learn to deal with it!

May is Lupus Awareness Month

A Look Back

This is an incident that happened last year but I never really saw the actual interview.  Click below to view video.
Overweight TV Anchor Jennifer Livingston Responds to Viewer 'Bully'

I will never understand why people think it is their right or responsibility to judge people who do not fit that perfect body image.  I look at Jennifer Livingston and see and absolutely vibrant, beautiful woman.  Why has it become okay to bully overweight people.  To those of you who judge so quickly, do you not have memories of someone in your family or a dear friend that had a weight problem?
Did you love that person?  Do you think you would have loved them more if they were skinny?
Please let people live as they are and quit shaming them because of their weight. 

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.
 

A Safe Place

I don’t see myself as a victim.  Lupus has given me an inner strength I never thought possible.  I have found that some lupus patients like to compare their symptoms.  Please don’t make light of my feelings by telling me how your disease is affecting you worse than what I am experiencing.  When we are in the moment of dealing with pain or exhaustion it can be very scary and in some cases life threatening.  I want you to know I feel for each and every one of you who is experiencing lupus.  This is a place where you can share and be guaranteed someone is listening that truly cares.  

This might not be a place for all the answers but it is safe place for you to share.

I hare it is Easter!

Dear Nurse

So sorry to the nurse whose patience is running thin. I was actually told by a nurse that I better not pass out because she couldn’t pick me up off the floor. I was horrified that I was so dizzy and feeling sick and then someone was making a comment about my weight. I was thin all my life. Then I found out I have Lupus. Taking steroids constantly started with my weight gain and yet I still ate less than most at the dinner table. My lupus started effecting my mucsles and joints and I was in chronic pain. Now I don’t know if you can imagine when you are in chronic pain but the answer is to move less and hope the pain subsides with yet more drugs your doctor gives you. Before I knew it my knees were bone on bone and I had to get both knees replaced. Okay I was ready to get up and going but oh no lupus strikes again. My ligaments and quad tendon kept having problems holding my artificial knees in place. I had rides to the emergency room in an ambulance more than I would like to remember screaming in pain because my knee slipped out of place and they would have to put me under to pop my knee back into place. I have had to have revisions done on both knees along with ligament and tendon repairs. I have had seven surgeries on my knees in the last four years. Each time I am in bed waiting to have surgery and then anywhere from six weeks to seven weeks in a brace for healing and then four weeks of physical therapy. My metabolism is so very, very confused that I am at the end of my rope worrying about my weight. People constantly look at me with a look of judgement. I am not lazy. Even in pain I tried to get out every day and walk but that never lasted too long because I was back to wearing a brace. If I am rambling it is because this is the first time I have had the chance to share these feelings with anyone outside my family and friends.
Please stop blaming the victim of obesity unless you know that person’s story. You can’t imagine what it is like walking in my shoes.