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.