( I think this makes 3 in 2 days),
Just having some moments.
Writing has always been theraputic for me
and...
it's almost two a.m.
Sleep just won't rescue me from the aches,
Garrett held me for a bit, and tried to talk me
out of my crazy mind, but he needed his sleep,
so off to the guest bed he went.
And I am here with this bright screen, listening to
Henry's every breath. I love that sound.
Normally mid night thoughts are not very kind,
but not so bad tonight.
I am thinking positive things...envisioning
myself doing all sorts of things, that I mistakingly
thought I had to put aside...just because of some
dumb "L" word.
Things like road biking. Just because I want
a beach bike, doesn't mean I have to retire my slim jim.
And running...I don't like it, never really have...but that
doesn't mean I can't do it anymore.
And swimming...
And hiking...
And paddle surfing (my favorite).
Flare ups, like the one I had today, scare me, not because
I'm afraid I will die, because I am afraid I will live...a long
restricted and useless life.
River and I watched Star Wars 3 yesterday, and according to
Yoda...fear is the path to the dark side.
And I don't want to turn to the dark side.
Personally, I think fear is feeding Mr "L", the more frightened
I become of the future...the sicker I become.
I'm onto you now Mr. L.
But on the balanced side, its not healthy for me to beat myself up
every time I have a flare up. I need to be positive and faithful, yes..
but kind to myself.
No more blame game.
I am a seeker of truth, truth is healing and at times, painfully
revealing. Perhaps my inner truth is telling my fears to shut
the heck up. (hick up, heck up...yes I am from utah).
Aw Hell.
I just don't like to feel useless, and that is how I feel when I am sick.
Dad says that after Harriett Beecher Stowe wrote Uncle Tom's Cabin,
(a major trigger for the cival war), she was questioned about her intentions.
She simply said I just thought I'd make myself useful.
I'm deviating...that happens at 2 a.m.
I decided that I am not going to be very useful if I keep taking
these meds my doctor gives me for the insane pain (not narcotics..
muscle relaxers, which in my opinion are far more scary than pain meds)
I want my mind back. I want my vibrant zest for life to return, unblemished
from moments of weakness, when I have traded in my mind for comfort.
I will trade in my clear mind over comfort from now on.
No more med head.
I refuse to live a life like that.
And I'm gonna get back on the horse...or the bike...at least try.
If I fail, perhaps I could write a novel like Harriot.
There is always someone looking for a war:)
it's almost two a.m.
Sleep just won't rescue me from the aches,
Garrett held me for a bit, and tried to talk me
out of my crazy mind, but he needed his sleep,
so off to the guest bed he went.
And I am here with this bright screen, listening to
Henry's every breath. I love that sound.
Normally mid night thoughts are not very kind,
but not so bad tonight.
I am thinking positive things...envisioning
myself doing all sorts of things, that I mistakingly
thought I had to put aside...just because of some
dumb "L" word.
Things like road biking. Just because I want
a beach bike, doesn't mean I have to retire my slim jim.
And running...I don't like it, never really have...but that
doesn't mean I can't do it anymore.
And swimming...
And hiking...
And paddle surfing (my favorite).
Flare ups, like the one I had today, scare me, not because
I'm afraid I will die, because I am afraid I will live...a long
restricted and useless life.
River and I watched Star Wars 3 yesterday, and according to
Yoda...fear is the path to the dark side.
And I don't want to turn to the dark side.
Personally, I think fear is feeding Mr "L", the more frightened
I become of the future...the sicker I become.
I'm onto you now Mr. L.
But on the balanced side, its not healthy for me to beat myself up
every time I have a flare up. I need to be positive and faithful, yes..
but kind to myself.
No more blame game.
I am a seeker of truth, truth is healing and at times, painfully
revealing. Perhaps my inner truth is telling my fears to shut
the heck up. (hick up, heck up...yes I am from utah).
Aw Hell.
I just don't like to feel useless, and that is how I feel when I am sick.
Dad says that after Harriett Beecher Stowe wrote Uncle Tom's Cabin,
(a major trigger for the cival war), she was questioned about her intentions.
She simply said I just thought I'd make myself useful.
I'm deviating...that happens at 2 a.m.
I decided that I am not going to be very useful if I keep taking
these meds my doctor gives me for the insane pain (not narcotics..
muscle relaxers, which in my opinion are far more scary than pain meds)
I want my mind back. I want my vibrant zest for life to return, unblemished
from moments of weakness, when I have traded in my mind for comfort.
I will trade in my clear mind over comfort from now on.
No more med head.
I refuse to live a life like that.
And I'm gonna get back on the horse...or the bike...at least try.
If I fail, perhaps I could write a novel like Harriot.
There is always someone looking for a war:)
Good morning Hon. I'm so sorry to hear you're having to deal with a flare...Truly I am. I wish I could wipe the pain and aches and fears away. I hope I get to see you tonight if you're up to it. It's been too long. I just feel to tell you that I really believe that others with lupus will benefit so much from your courage, for being willing to share in your blog with your powerful writing what you experience with such honesty. I know that sounds really stupid coming from someone like me without lupus, but I am just grateful for you. I admire your spirit and your soul and your life. You WILL be able to accomplish all that you want to and much more, I'm certain of it!!! You are so strong! Always know I love you girl. I will pray for a prompt remission from Mr. L today!!!! Your faith will promptly defeat your fear! I love your blog. Thanks for sharing, and you're going to write moret han one novel!!! p.s. Ryan left you a little note last week on our blog in case you haven't read it yet. A comment in reply to your Panguitch Cafe one....~Love and hugs~
ReplyDeleteThere are volumes of novels within you. Write as much as you want. Post 5 posts a day if need be. The ability to express yourself freely and well must have been one of the coping skills you signed up for before coming to earth. :)You are wonderful Holly - absolutely wonderful. I'm so sorry for your pain - physically and emotionally. If the Lupus isn't going to go away, I pray the Lord will send other compensatory blessings instead. Kind of like, when you want to take a painful assignment away from your child but know you can't - you do everything else you can to help and support them. I pray He will do that for you.
ReplyDeleteI don't know were I read this but I believe it was Elder Packard in one of his last adresses. He said that every tear shed here will be compensated a hundred fold. Just know that You can ALWAYS rely on me. I am here for you ALWAYS. YOu need to read that talk I gave you for your mom. "A relative of mine has struggled with Lupus for 25 years. She has spent the majority of her time in bed, unable to cook, clean and serve in the church. This was a huge frustration for her and she wondered was SHE could give. What was her purpose. After much thought and prayer, the spirit taught her an invaluable truth for her life. she was the one one who could LOVE her children with a mother's love. Her purpose and gift was to build, encourage, teach and love, and she could do that from her bed. That is how she adapted." You are an amazing mother. You are doing such and incredible job raising your children. They really are great kids because of you. Just know that I love you and want you to know that you are such a strength to me so please let me be a strength to you. Call me anytime.
ReplyDeleteholly, you have good friends surrounding you, let them lift, help and support you. have you looked into any eastern medicine? acupuncture, herbs, anything that might alleviate the aching and not make you feel out of it. and you can post as much as you want, we are here to listen. love you.
ReplyDelete