Is it my naptime yet?

How is is possible to be so tired that your body hurts? I've been like this for days now.

I don't smoke and haven't smoked in 20 years.  I eat better than most people in the USA.  I can say that since I limit my sugar, carbs, calories, salt, and its a well balanced plan.  I exercise more than I ever did now then when I was in my 20s and 30s.  I probably could out run someone half of my age if I wasn't so tired.

In fact, I'm too tired to finish this blog.  Could someone finish it for me?  Perhaps in the comment section?  Thank you for your help.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Guilty or Not Guilty

Last night was my first of 5 self help classes for Lupus.  I'm looking around the room thinking how did I get here?  Do I belong to this group? Why do I feel guilty for sitting with these people?  How can I complain about my problems when these people can't seem to get up in the morning without pain?  Some Lupus patients have kidney failure, heart problems, and crippling pain.  What gives me the right?  I'm not sure.  Is it all relative to the situation?

However, this is my blog, and I'm allowed to complain here without the guilt.  Childlike, perhaps, but whatever. 

I didn't take my medication last night and now I feel like crap, emotionally and physically.  I'm having trouble with my vision this morning.  I can see the damage which is quite annoying.  I have ugly ulcers in my mouth (which is a new thing), my pissed off knee pain , all over body nerve pain, and the fatigue have greeted me this morning with a sunny hello.  I also didn't sleep well so that makes everything worse. Oh, and one more fun filled thing to happen to me, I have rash on my back. 

For my friends.

Ignorance of Lupus. It happened again!

6/5/11 Added:  I was eating a slice of carrot cake (not on my special diet but tasted sooo good) and asked one of my co-workers if he would like a piece.  He said yes, and I told him jokingly he would get Lupus and then he changed his mind.  He was afraid he would get my disease.  For some reason, that actually hurt my feelings. Is this stupid to worry about what other people think of you?  

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Since this is Lupus Awareness Month, I thought I would post several things people have said to me or about me...

Lupus is cancer, right?
She has a disease because she works out to much.  It caused her to go partially blind...

Lupus is contagious.

In a meeting, I have to sit in a certain spot to see all the co-workers.  This"person" said, wait, I'll make the print on the screen larger so you can see...THANKS for reminding me about my eyesight...and announcing it to the rest of the company.  Thank you for reminding me I have Lupus on a daily basis.

I have a new wonderful statement that I almost threw a left hook:  "You look great for someone who is sick"

I need a good laugh.

The last time I went to Will's Eye Hospital back in March, I was nearly blind in my left eye.  I wish I was exaggerating.  I was a mess.  I was taking the train into the city, and then returning back to the suburbs to have the IV of Solumedrol.  It was one of the worst experiences in my life.
When I left Will's Eye, I asked the receptionist when do I need to come back for a follow up?  She said that we will call you.


I waited a few days and didn't hear back from the doctor or the hospital.  I called, the person who answered said, "Why would the doctor want to talk to you, she sees 50 patients a day."  If you need your test results, you can call the 800 number. I told her the reason I'm calling is I'm going blind.  I was devastated, hurt and felt abandoned by what I thought was one of the best eye hospitals in Pennsylvania.  My general ophthalmologist  also felt the abandonment.  He told me he was going to help me but this is not his speciality.  Between the Rheumatologist and my general ophthalmologist they worked out a game plan of drugs and checking my eye sight.


Recently, my general opholmologist asked me to make an appointment with the hospital again to check make sure he didn't miss anything.  The anxiety started.  I called, the woman again wanted to know why I was calling, who told me to call, and a thousand unnessary questions.


Today was my appointment and I told the doctor who immediately sent in the office manager.  The doctor was so shocked and so was the manager.  I told the office manager the receptionist violated my rights as a patient to see her doctor.  They know who it was by the notes in the computer, and they are taking immediate action.  I hope they fire her and not move her to a different building.  Once that little red light of anger goes off in my head, you will need to run for the hills. 

Dr. Hall @ Will's told me if any changes do happen at any point, to contact her or the office manager directly.  Worst case, if I can't get through, I can go to Will's Eye emergency room where she will meet me.  They have concerns of this repeating itself and attacking my right eye.  I have to go back in 6 months for a re-check.

I lost a good portion of my eyesight in my left eye.  I was told it was too late for my eye to repair itself.


To be honest, I'm feeling pretty crappy! I could use a good laugh right about now.  Besides the eyes, I still have nerve pain and now my left hand won't stop shaking.  I've said it before and I will keep saying it,  LUPUS SUCKS.