Well, I couldn't lower to .25 of prednisone today like I planned.  I was in too much pain this morning.  I will try again tomorrow.  I had insomnia again last night but instead of reading or going on the computer  I painted my nails and washed my face with a neutrogena microdermabrassion machine my husband got me.  It's called the healthy skin rejuvenator.  You can use it every 3 days but I am lucky if I use it every couple of weeks.  It says it is the anti-aging power treatment for wrinkles, pores, age spots and firmness. My malar rash is so much more noticeable for a day or two afterward but my skin and pores are so much clearer.  I hate blackheads so much and this is the first thing I have found that really helps keep them clear besides facials. And  I can't afford facials at the spa every month so this is the next best thing I have found...well, actually my husband found it.  He has been on very good behavior lately!

I also get pimples from prednisone and from my hormones in general.  I went to one of the top dermatologists in my area to talk about my malar rash and when he heard I have had the rash since I was diagnosed in 2005, all he wanted to talk about was my acne and giving me pills to treat it.  I was thinking, I take over 20 pills a day to manage my diseases and you want me to add another one so I don't have PIMPLES?!?  Do you see the rash all over my cheeks and nose?  Do you know that it is so bright most of the time that no makeup can hide it?  Pimple pills?  Please, that is the last thing I am concerned about!

Hardly anyone talks to me about my rashes.  My Mom said once that she gets so upset for me about them and doesn't know how I cope so well with them.  But my Mom is beautiful, looks a lot like Jackie Kennedy Onassis.  So for her she always put so much stock into her looks and it means a lot to her.  Me, I never felt that way.  I am not ugly, I have been told  before that I am  beautiful, pretty,  cute, etc. but she is one of those REALLY beautiful people, who just always was noticed for her looks.

But kids are the best.  We had my husband's cousins visit us and the little girl just stared at me for a minute one morning and asked bluntly, why do you have red stuff on your face?  It was just so refreshing because they are so innocent and honest. My rash was really angry that week and very bright.  I feel like telling people that I am not blind, I KNOW when my rashes are so blatant that you have to be blind not to notice it.  But no one says anything, they are afraid to hurt me I guess.  And ironically I feel so much happier when someone asks me about them or lupus.   Most of the time my voice gets shaky like I am about to cry while talking about my constant pain, fatigue, muscle aches, etc. but it still feels good to explain why I can't attend lots of events, why you never see me taking the kids to the playground or community pool or playing in our driveway like a lot of  other mothers do, why I can't go out in the sun and heat and why I cancel on people last minute because I am too tired, sick, or depressed and sick of being sick and tired.  It just helps to make them more aware of my struggles.  I cancel on people  a lot and I feel guilty, especially if they are someone who doesn't know much about lupus and how hard it is to get through a normal day when I am flaring let alone take a shower, put on makeup, put on any clothing fancier than my pajamas, get in the car and drive to them or clean up my house for them if they are visiting us and then to be social & upbeat.  On a bad day, my muscles are so weak that I can't even hold my arms up long enough to shampoo my hair and forget about a blow dryer.  Hence the new perm; no need to ever blow dry.

But back to people not talking about my rashes.  I used to act the same way when I heard someone died.  I would  avoid talking to people about their loved one's passing  because I was so afraid of upsetting them more.  And the same when I knew people whose children have mental illness, drug problems, etc.  I did not feel comfortable bringing it up and was scared they would not want to talk about it and I would upset them.

But then I watched a show on Oprah, I really love some of her shows, and the guest was Elizabeth Edwards who was talking about when her son died at age 17.  I am really paraphrasing here because it was a while ago and the lupus fog (my memory) is bad, but she was talking about people not knowing what to say when he died and how much she appreciated it when someone would bring him up and she could talk about him.  She said that her and a lot of other parents with the same loss biggest fear is that their child will be forgotten.  So when people talk to her about him and recall memories, she knows he is still alive in that person's heart and mind.  It helped me so much in my personal life.  Now when I am talking to someone who lost a loved one, I ask how they are doing and lend an ear for anything they want to vent, share, laugh about, etc.   There is always deep pain too but I can tell it still means so much that I brought it up and they can talk about their spouse, parent, etc.  Also, I know a family with a schizophrenic son.  I used to never ask about him because I didn't know what to say and didn't want to upset them.  The first time I saw them after watching the show, I just asked "how's **name** doing?"  I could see how happy they were to talk about it and they thanked me for asking.  Even though he was committed at the time and it was a really difficult period for them, they were so happy that I brought it up and we talked for a while and I asked questions and learned more about the whole situation.  It was really wonderful to see how much it meant to them so now I make sure to ask about him every time I see them.
 
That's how I feel about my lupus rashes, although obviously to a much lesser degree.  It is the elephant in the room that not many will talk to me about but they all are thinking about it (at least that is what I think they are thinking).  That's why kids are so refreshing.  The only thing I worry about is when another kid asks my oldest son, what's wrong with your Mom's face?  I am sure at some point, he will be embarrassed about my disease.  But teenagers are embarrassed about almost everything about their parents during some stages.  Oh well, that is 8 years away.   By then, lupus could be cured or advanced enough that I will be able to live a more normal life and hopefully the sun won't be my enemy.

Sweet dreams to all of you awake like me and reading this.  It is after 5 am and the pain hasn't stopped yet.  Once again, I fell asleep on to couch around 8:30, woke up at 1:30 from the pain.  I forgot to take my medicine before I went to sleep again!  It just sucks because then the pain gets ahead of me and it is so much worse and takes a lot longer to get to the point where I can function at all.  Right now it is a toe curled, teeth clenched pain with body aches all down my legs and feet and stabbing pain in my neck and mid back.  And I am down to 4 pain pills left, I can't fill my next prescription until Monday and I need 25 pills to get me through the weekend.   I am going to have to call my doctor in the morning.  And I was just there and he asked if I was going to make it through the month or did I need more and I said I was fine, ugghh.  So it is not an issue with getting it approved, just that some of the office staff that I don't know can be pissy and say they need 48 hours.  I am just going to have to tell them I will not be able to physically make it through the weekend if I don't get more today and if I don't hear from them go down there and wait to talk to the nurse.  Because I would have to go to the hospital if I was without pain pills for 2 days.  The pain is so overwhelming that some mornings and everytime I wake up in the middle of the night I cry until they kick in.  I just lay down in a fetal position and say in my head, "please God, please God, please God" over and over and over until the pain meds start working.  

WOW, I got another comment!  Thank you, thank you, thank you!!  Whose going to be next?  It is so nice to know I am not alone out here, typing away for nothing!  Whose going to be the first to SUBSCRIBE?!?  Come on, if I am going to be a spokesperson for lupus I need a big fan base!  This is our year and our decade, lupus is going to be talked about as much as other diseases, we are going to have new drugs and treatment choices and one day, someone will discover why we get this horrific disease and how we can go into permanent remission or be cured.  That is a sweet dream for tonight, what would I be doing right now if I was cured....good night all.

xoxo

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