(George Weiss / Bob Thiele)
I see trees of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful world
I see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful world
The colours of the rainbow, so pretty in the sky
Are also on the faces of people going by
I see friends shakin' hands, sayin' "How do you do?"
They're really saying "I love you"
I hear babies cryin', I watch them grow
They'll learn much more than I'll ever know
And I think to myself, what a wonderful world
Yes, I think to myself, what a wonderful world
Oh yeah
Ask me why is this song in my head. I dunno but its been there for days now. I love this song. I have for years. I can't sing for beans. But I always get up and sing this song at a Karokee Bar. Don't care if I make a fool out of myself. Maybe that's why the song is in my head lately. This new diagnoses has me really upset lately. I have been able to handle all the past Lupus crap. The horrible fatigue, the excrutiating pain. I have even been able to learn to deal with the disorientation and confusion that the cerebral vasculitis has caused. I have cultivated an understanding with my Lupus and we work well together now. I have acknowledged the seizures and resoled myself that they exist and have come to terms with them. Medications control these woes to where I can almost live my life. Yes, medications govern me. But what choice do I have?
Now this!! My body has taken on a fancy, inclination, villeity of its own. It does what it pleases. It twitches, jerks, yanks, pulls and moves on its own. Does things of its own accord. I have no control. I cannot regulate my own body now. There is no cure. The approach for treatment of dystonia is usually three-tiered: oral medications, botulinum toxin injections, and surgery. These therapies may be used in alone or in combination. I am very sad. Its not only the fact that now its quite obvious that I am sick that upsets me so much really. Its more that I cannot control this anymore. People continue to tell me to smile. They continue to tell me to be the "Old LuAnne." People still want the "Old LuAnne" back. I wish they would stop saying that. Do they realize how much that hurts me. If only it was that easy. If only it took them saying it to get the old LuAnne back. I would do it in 2 seconds. But its not tht easy. I just wish they could see me when I am trying to swallow 15 pills in the morning and then again in the evening. And, that's on a good day. That's not on the days when I need to take pain medication. That's not on the days when I don't need to take an antibiotic because I have a kidney infection or because I need to be admitted to the hosital because I am dehydrated and have to have IV fluids. Or because I am hurting so much that I have to have IV steroids because nothing else will help me. So please think before you tell me you want the "Old LuAnne" back!
Yup,
I see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful world
Even though all this crap is happening...... because I still take each day "One day at a time!"
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2 comments:
tears.....
Such a beautiful song...and such a beautiful entry. Having been an e-friend for over a year now, Lu, I still see that loving kind and thoughtful person. You have to grieve..and the really rough part of this lupus...is having to endure the grief of your family and friends too. Sounds like they talk about the "old LuAnne" because they have not been able to accept what is happening...you are living the disease...while they are witnessing it...so it is going to take them some time to catch-up.
It is a wonderful world...and taking one day at a time...sometimes one second at a time is the most courageous thing to do.
(((((LU)))))
I think this is a wonderful site. I am so glad it is here. I find in this journal many things that so clostly apply to me sense I also have Lupus, fibermyalgia, COPD, osteroarthritus, IBS, Gurd,sleep achnea with shakey legs, and the list goes on and on.
People do so need to be educated about Lupus. Just because we don't look sick does not mean we are not very sick and in lots of pain.
Also there are a lot of us out here in syberland that need the support of journals like this, because of the need for people who know how we feel are there to share with, cry with, and laugh with. Sometimes there are so few people we know that understand, especially our famlies. Talking to others that understan helps and we are able to share about our Drs. and the meds. and lots of times fine a lot of help in understanding what we need to do and what doctors to find that will help.
Keep this journal going, there is a great need for it.
love Willow
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