It occurred to me that lately my journal entries have been centered around my pain and fatigue.
Something jolted in my brain that I should be writing about better stuff.
But then I realized that this journal is called LUANNE'S LIFE LIVING WITH LUPUS. Therefore, what I write about is going to be about me and Lupus.
What else should it be about? It is, after all, my journal.
I don't want to sound like a whinner but ....... Doh!!!
I have Lupus. Yup, yup I know that I should be saying I may have Lupus but Lupus doesn't have me. Well, you know something? Lately Lupus has gotten a good grip on me.
So, you are going to read the good and the bad. If you only want good, flowerly stuff find another journal to read. Sorry, but I have to be straightforward.
Unfortunately, it's been pretty bad recently.
Pretty bad......... no wait....... horrific is a better word.
Christine writes about Spoons. I'm sure most of you are familiar with Christine's accurate description of every day life with Lupus.
If you haven't read it, please do. I'm totally out of Spoons.
I could raid a catering hall and I still wouldn't have enough Spoons.
There just aren't enough.
Can't even stand at the sink and wash ONE dish without feeling as if I am going to pass out.
I blow all of my spoons just trying to get moving in the morning.
I have resorted to using "Big Gun" meds a lot. And, they are hardly working.
What am I going to do?
I'm at a loss as towhat to do. I refuse to go to the ER and deal with those imbeciles.
Alas, I just pray this pain and fatigue go bye bye.
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7 comments:
((((((((((((Lu))))))))))))) I am so sorry that you're having such a rough time of things. It just breaks my heart. I am there with you on the not enough spoons. I have been waking up in the negative lately and I hate that.
I hope for better days for all of us with Lupus.
Hugs,
Susan
I am so sorry. I can only send a hug{{{{{{{{Lu}}}}}}}} Margo
(((((((((((((((((((((LU))))))))))))))))))))
I no the feeling. It stinks.
I wish I could hug you and make you feel better.
saying prayers you feel better soon.
eileen
Your journal should be about whatever you want it to be about. And I can relate about the ER. I hate going there.
Krissy
http://journals.aol.com/fisherkristina/SometimesIThink
Lu dear, I am glad to see you writing in your journal again. My heart hurts that the lupus is being so unremittingly hard on you now. I am so sorry, dear.
Please keep on writing, even if it's not what you think is 'better stuff.'
loving you
karyl
yep, pain and fatigue sucks. I am so sorry you are feeling so bad, honey. I love the spoon article. I have shown it to my daughter and a friend. I have actually used pencils to show them. It is wonderful. I have been pretty sick myself. Didn't get out of bed two days ago. I had no spoons either. I hate it when I wake up with zero spoons. Negative energy. I will pray for you. I am doing a bit better today, honey, so I will send all my good vibes your way. I love you!!!! xox
http://journals.aol.com/valphish/ValsThoughts
you know from reading my journal that i'm right there with you ... woke up today with "even" spoons so ~~~> here's an extra! hate the er & those docs thinking all we want are pain meds. today i am dealing with STINKY (that hospital doc), who dc'd my pain patch (unbeknownst to me) and recommended a re-eval of my pain meds. the pain patch is all i have. what a ... jerk. that's all the energy i'm going to expend on him today. he doesn't deserve another spoon. my thoughts and prayers are with you, luanne. may the lupus let go of it's hold on you ...
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