Starting Over (a post from one of my friends)


I would like to post this from a friend of mine who also has lupus and fibromyalgia. She has said what a lot of us feel like saying sometimes so I asked if I could repost this and she said sure. Enjoy reading and read with an open mind and heart! Thank you Melissa Bishop Wise for your honesty and candor in telling it like it is sometimes!

Starting Over

I apologize for this rant, but I just have to get this out.  As most, if not all, of you know I have both Lupus and Fibromyalgia.  Both of these illness are both severe, and nowadays, debilitating for me.  This means that most of my days are spent in bed.  Most people don’t know that, when I’m on the computer, I’m actually laying in bed.  People think that because I’m on the computer, I’m having a good day.  That’s not necessarily true.  Sometimes, although I’m sick, I get on here just to have “some sort” of human communication.  My husband works, my girls go to school, and I’m stuck here with my diseases.  There are days when the pain might be a migraine.  There are days when my kidneys feel like someone has LITERALLY punched me on both sides of my back.  There are days when my muscles, in my legs, give out and I’m left picking myself up off of the floor.  Walking VERY SMALL distances cause me to have severe shortness of breath.  I have to have Jamie, near the bathroom, while I take a shower because I’ve fallen just trying to stand on my own two feet!  It is very difficult dealing with the fact that you can’t recall a conversation you’ve had, just five minutes ago, or even finish a thought because somewhere in the middle, you forgot what you were saying.  Lupus leave me wondering, on a daily basis, if it will be my heart, lungs or kidneys that could give out that day.  I’ve been to the hospital so many times, I’ve lost count.  Once, in 2007, I almost lost my fight when I got septic, required two blood transfusion, a heart cath (which requires surgery, because it’s putting a line from my arm straight to my heart, in case of emergency).  They had told Jamie that if the last, of three meds, didn’t work I wasn’t going to make it through the next 24 hours.  The last February, I was admitted to the Heart Hospital for Congestive Heart Failure.  After 3 days, and against my doctors wishes, I left the hospital.  That is just SOME of what I have been through since being diagnosed with my illnesses.

Through all of this, I have managed to CONTINUE to be there, whenever I could for whomever I could.  Most people “think” they know me, but they don’t…

  • If there is a dollar left, to my name, I would give that last dollar to my friend
  • If I am having a bad day, and a friend needs me to be somewhere, no matter how bad I feel, I’m there.
  • If I only had on breath left in me, and someone else needs it, it’s there’s.

What upsets me is, with all I’ve been through, all I EVER ask is when I have a day, when I’m feeling “good”, please be there for me.  The problems is, everyone SAYS they will be there, but when it comes down to it, they aren’t.  Now, I completely understand that being friends with someone so sick, is difficult…But when I’m in bed 99% of my life now, when I can get up and out, WHY CAN’T YOU JUST BE THERE???

I apologize for my rant, but I put it in a “note” so that you don’t have to read this if you don’t want to.  You know, sometimes people just need a phone call, text, message, card, letter…JUST SOMETHING…Is that really too much to ask?  Maybe I need to clear out my “friends” and just start over….




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