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.

Only One Week Down....

Well for heaven sakes I have only one week down and six more to go for my knee recovery.  I am going out of my mind not being able to get out every day.  Even on my worst days I try to get out for at least an hour or so.  I love getting out and talking to people.  My sister says I never meet a stranger.  If someone even catches eye contact with me I am like "Want to talk?"
I find talking to strangers always puts life in perspective for me.  When you sit home it is easy to feel sorry for yourself but when you get out you realize everyone has problems and once in a while I find someone who has lupus.  It is like a sisterhood...you want to high five the person and say I know what you are going through.
I am telling this story because about a month ago I went on the Lupus Foundation Message Board and posted
"Who is this woman looking at me in the mirror?
The two or three very first comments were people accusing me of feeling sorry for myself.  I was called a victim and of course life was going to be awful if all I did was stay at home and watch old shows.  I was not expecting this kind of response at all being I was in a group of people who had the very same disease.  No one knew me from atom and when I made that post I have to say I was at my lowest point.  I was crying uncontrollably and honestly if I had lived alone I don't know what I would have done.  It took hours for my husband to talk me back down off the ceiling.  For the first time I truly felt like I understood why these poor kids commit suicide from kids bullying them on Facebook.  My husband was so angry that I reached out and got pushed away.  It seems there is a group of people that have been on this board  for so long that they just don't have patience for newbies feeling sorry for themselves.  Although I have gone back just to read posts and those very same people have posted how sad they were on a given day and that was perfectly acceptable.
The thing is that reading my first paragraph will tell you how I am on a normal day and how I try to make the best of my situation but they just assumed things and made a judgement that I thought was very mean spirited.
That is why I am writing my own blog.  You can come here on a bad day and I will not judge you.  I will not think you are weak.  You will receive empathy and encouragement because we all know tomorrow or the next day will seem a little brighter.

Home from the hospital

My new doctor seemed a little shocked to see what kind of shape my tendons and ligaments were in around my artificial knee.  With all my heart I tried to explain that my knee cap was sliding in all different directions and I felt that some major damage was being done but I guess he had to see it to believe it.
So here I am in the recovery stage of 7 weeks to do very little but breath.  Most patients are encouraged to get up right away and use that knee.......oh no not me.  I have crutches and a wheelchair to give me some kind of mobility.
Of course the weight issue comes right into mind but I will have to put that on  hold for now.
Perhaps it is time to let it go about my weight.  Here is an incentive my niece put on her facebook page.  It is certainly worth reading but actually changing the way I feel about myself may be too difficult.  I can dream.....
So you are feeling too fat to be photographed...

My lupus seems to be taking it's toll on my joints, ligaments and tendons.  Today I find myself once again going to the hospital to have surgery on my left knee.  After my total knee replacement in July of 2012 I stood up at the doctor's office and tore my quad tendon.  Guess what?... surgery!!  I had surgery in August, 2012 to repair the tendon.  Ya think that would be enough right?   Ahhhh no.
In December, 2012 my knee cap started sliding to the left.  Yes most painful. So this brings me back to today getting ready to to go to the hospital for surgery.  I have a new doctor this time.  So I am trying my best to think positive.

This will be my eighth surgery on my knees since early 2009.  I must tell you I am getting a bit tired of spending time in the hospital, six weeks to heal and at least four weeks  of therapy.  Back to back to back leaves me with very little normal time in which I can burn one ounce of calories.  Now I have become to what my former doctor called "a big girl".  The anger and frustration I feel when I hear those words.  I certainly haven't been home eating bon bons every day.  What people don't realize is that I actually eat less than most of my family members and friends but with all this down time and medications I take for lupus my metabolism has been destroyed.  I want to help myself.  I want to be at an acceptable weight.

So I guess I am puting a lot of importance on this surgery today.  Please Mr. New Doctor do something so I can start walking normal again, lose weight and feel like I am part of society that blends in rather than sticks out like a sore thumb.

Fingers crossed for luck so I will have a successful surgery.

Who is this woman looking back at me in the mirror

I used to be vibrant, energetic, pretty and thin. Not that my life has been easy by any means. My heart was broken to pieces by my first husband who cheated on me and had me think I was nothing. Then I met this great man that showed me how a marriage could be with love and trust but my husband found out he had cancer and we fought if for a year and the cancer took him away. Now I am married to a wonderful man who thought he was getting this vibrant, energetic, pretty and thin woman and he ended up with me and my lupus. The fact that he has stayed with me and we are now going to be married 19 years blows my mind sometimes. He is truly my best friend. It hasn't been easy but we endure all the ups and downs.

When I look in the mirror I am unrecognizable. My features, hair and build are so different that people don't know who I am when I walk into a room. I would never go to a class reunion. Seeing family members that I havn't been in touch with always looked shocked when they see me. Inside I am that very same person but I have to say that when I look in the mirror I feel like I am seeing a stranger even though it is me!!! So life is all about not being shallow and to appreciate who you are inside and I get that but what do I do with the girl in the mirror? Sometimes I think if I covered the mirrors I would be more at peace with myself.

Do I sound crazy?