Monday, March 23, 2009

ACROSS THE RIVER ...................... CHARLI at BROKEN MANNEQUIN




Photo by: John P. Ford




Each of us in this community of writers and poets and artists has connections that are special and even spiritual. Anyone with a connection with Charli knows what I am speaking about. For me, Charli was the first blogger I met.

Charli has encouraged me in my poetry and writing many times. She has shared by snail mail special notes and cards that I love including a Halloween Spook! Her spunk for living life as it presents itself to her is here in her words. Her approach is to embrace life! Charli's talent in poetry and writing is evident to anyone who reads her work.

This passage below is taken, with Charli's permission, from her Care pages. This is a difficult time for Charlie and she is meeting the challenge. Please read this. Words and thoughts have incredible power. Send yours to Charli for healing and strength. The link to her Care Pages is on her site and you can share with her any comments and encouragement you might feel.

From Charli

ACROSS THE RIVER

I ask this with a smile on my face. Okay - a sardonic one, but a smile, nevertheless.

I have much to be thankful for today.

First: The Big News. Just a few minutes ago, I received my long-awaited letter from the Social Security Administration awarding me disability benefits. It comes as such a relief. I have been terrified at thoughts of my future lately. The finances that come with chronic illness can be as frightening as the organ failure. I have been praying for help. Now I’ve got it. Thank you for all of your prayers – they worked! God is listening,.

This week I had a wonderful appointment with my primary care doctor and the medical student who works with her and follows me. I needed this appointment to be good, you see, because that appointment I spoke of in my last update - the one with my rheumatologist - went miserably.

That appointment - upon which I had pinned so many hopes - was horrible. I sat shivering and practically naked for nearly two hours in the exam room. My doctor dismissed nearly every concern I brought up. I was actually crying as she sat next to me and coldly took notes and she never paused to ask me if I was okay. She seemed intimidated, perhaps even angered, by my use of the vocabulary I’ve learned about lupus. I’ll spare you a rant and leave the issue by saying that I cried hopelessly for four days.

And now I’ve had this wonderful meeting with my wonderful primary care doc. Thank you baby Jesus! She listened to all of my concerns and although she was unable to do much (since she’s not a specialist), she absolutely agreed with my suggestion that I see a different rheumatologist. In fact she said she had been thinking about it for some time. She said, “I’d like to send you across the river and get you in to see someone who can understand what is going on with you. You have a complicated autoimmune disease that we’re calling lupus only because it looks like lupus. We really don’t know what you have.” (By "across the river" she means getting me a doctor in BOSTON and not Cambridge. Guess that's where the big girls play.)

She is going to get me in to see someone who specializes in “complicated” cases and who will hopefully put all my bizarre puzzle pieces into a bigger picture. I’m looking forward to meeting a doctor who’ll be able to understand my puzzles better.

Update on my health:
I had a migraine yesterday and today and spent much of last night painfully vomiting up pills and girl scout cookies (it’s that time of year!). I am feeling a little better, but very fatigued.

I am having trouble with my jaw – pain in my face that comes with chewing, sleeping, and sometimes for no discernable reason at all. My doctors all seem to suspect TMJ disorder – but no one is willing to diagnose or treat it until I see my dentist in a couple of weeks. Meanwhile, I’m taking muscle relaxants and eating soft foods.

The arthritis in my feet is making it hard to walk much. After standing and walking for more than half an hour or so, it feels like someone has stepped on my feet. They just throb. My right one hurts more than the left, which means I end up limping. Cute. Because of these weird foot troubles, my podiatrist (another specialist!) has prescribed foot orthotics. When I get them (they are made specially for each foot), I’m supposed to wear them in sneakers. I’m supposed to wear sneakers! No! Just in time for summer and sandal weather! I don’t even like sneakers! Pain is a strong enough motivator, I suppose. And thankfully, I own plenty of cute sneakers.

My kidney function has worsened slightly, but I’m not too worried. I think it will get better.

The fluid around my heart (that pericardial effusion) hasn’t gotten any better, but it hasn’t gotten any worse. This means I don’t have to endure any treatment for it yet – just keep a close eye on it.

I have started physical therapy for my back. I’ve been having problems sitting up for very long. Any more than a few minutes is painful and more than a few hours is extremely painful. It turns out that, because of some weird muscle thing in my back, one of my legs is 2 cm shorter than the other. (Which makes the foot pain worse, of course!) So I do my exercises every day and I’ll keep going to PT. Hopefully it works!

My lungs are actually doing okay today. Not better, but not worse. My pulmonologist is encouraging me to spend a month or two on a high dose of steroids to see if the damage done to my lungs is permanent. I’m dreading the prednisone. But breathing is important and she’s a good doctor who I trust. We’ll see what happens.

There’s more… I could bore you all to death with my various afflicted body parts. But I’ve probably given you enough for now!

The important thing is that I am feeling thankful and hopeful today! Ecstatic, really, since I got that disability letter. Thank you all and thank you baby Jesus!

Also – I got a big care package full of Avon goodies from my Aunt Carrie yesterday. Now I can really pamper myself! A celebratory bubble bath is in order! Thanks, Aunt Carrie!

43 comments:

Woman in a Window said...

I've been wondering and worrying about Charli. I went to her site a few days ago to see if there was any information. I don't think there was, if I was in the right place. So to hear from her here is wonderful.

Charli, I'm so sorry you're going through so much. Your spirit shows through though, no matter what. I wish only the best for you, such a gentle soul you are.

my best,
erin

Audrey said...

Linda, thank you for posting this. My thoughts and prayers are with Chali.

SarahA said...

Positvity is strength in itself and the positive thoughts of others can add to that strength. I really believe that. I also think things happen for a reason, even if at the time we cannot understand why. We can look back in time to come and realise exactly why 'shit' happened.
My positive thoughts adding to yours.

Marvin D. Wilson said...

Charli - thanks for sharing and for letting Linda share with us. Prayers and positive energy I send your way. I know what dealing with disabling arthritis is like and can empathize very much even though my medical condition is not overall as challenging as yours.

Stay focused on the positives, on good friends, eat well and feed your mind with healthy thoughts. God is with you in all things of this world.

Marvin D Wilson
http://inspiritandtruths.blogspot.com/

Rikkij said...

They don't come any better than Charli! As she likes to say, she's in love with just about everyone. was gonna check care pages today, thanks for doing the leg work, Linda! ~Rick

Charli Henley said...

Thank you to Linda and to everyone else! I am trying to work my way
back to the surface of things... It's a long road. For anyone who'd like to check in on my health, you can read what I call my "sick blog" - just a place where I occasionally post updates about my health for my friends and family.

It is http://www.carepages.com/carepages/Charli-Henley

You just have to "become a member" by typing in your e-mail address and making up a password. Then you can type my name (Charli Henley) into the search field and my updates should pop up.

Thank you so much, Linda! And thank you everyone!

Laura said...

Thank you Linda for letting us know and I will send my support. I hope you had a good weekend.

When you get a chance, come and enter the Under the Sheets five question contest :)

ayoung said...

That was beautiful.
My thoughts and prayers are with Charli

WELCOME TO MY WORLD OF POETRY: said...

I havev't heard about Charli before and I found what she wrote so sad.....yet not one word of "Why Me"? She must be in awful pain which puts my few aches and pains into perspective. Thank you for airing this. I wish Charli all the luck in the world and will be in my prayers.

Take Care.

Yvonne.

RachelW said...

Healing thoughts are coming your way, Charli. That sounds so horribly stressful, to have so much strain on your body. Autoimmune conditions can be so very frightening.

Thinking of you, Rachel

ps. Thanks, Linda, for letting us know what was going on.

Ghost Dansing said...

i like her blog and miss her posts.... i wish she wasn't so sick.....

E. Michelle said...

Charli, you are a wonderful writer. I know that you can make it through this. I've been wondering what you were up to.

L. Rochelle said...

Thank you for telling us this..I will say that I have overcome the worst, and I will pray for Charli as I have for myself..I'm a survivor, so it works!!
Lyn

K.Lawson Gilbert said...

Linda thank you.

Charli - I didn't know about your illness, honey. I am so sorry. But, it seems like you are getting good care and have a positive attitude. That will help you so much. I will be thinking about you every day. I have signed on to your care page. Blessings, Charli! xo xo xo

Natalie said...

Thanks, Linda! I was wondering too.
Sending you a gentle hug, Charli.xx♥

Beach Bum said...

Just dropping by to say hello and read about Charli. Surfed over to her site to do the same.

LORENZO said...

I too wondered what was going on since her post with the "red pistol". I knew that some jerk from her past had surfaced and hoped that nothing happened with that. Tell her to hang in there and that many folks are rooting for her.

Every Photo Tells A Story said...

Charli, if you revisit this post: My thoughts and prayers are with you, too! It's a long road, but you'll get there:)

~Nancy xoxo

P.S. Very kind of you, Linda, to share this with your readers.

SUSAN SONNEN said...

This puts our own lives in perspective, doesn't it? What we think is difficult or painful suddenly seems less so. God bless Charli. She found me a few months ago. Her courage and determination are inspiring.

I'm going to take a minute to pray and then head on over to her blog.

Thank you for this update.

judith ellis said...

Linda - It is the love and concern for others that make our lives fuller and better. Thank you for the kindness you have shown to Chali seen in this post. May God bless you for your kindness and thoughtfulness and may He continue to strengthen Chali. I have been to her blog on your request. She is a beautiful one.

Linda S. Socha said...

Charli.....your well being is in everyone thoughts here.

Erin
Thank your for your care for Charli and for your perceptiveness and best wishes

Audrey
I am so glad you stopped to say hello and to leave your thoughts and prayers for Charli. I know you deeply understand these difficulties

Sarah A
You are exactly right. Thank you for your positive thoughts

Marvin
Glad to see your energy and care here for Charli. Good advice and positive thoughts

Rikkij
Thank you for sending you love and caring for Charli. It counts and it matters

Hey Charli
Thanks for the note. I know you will have some care followers on many levels and that thye are relieved to now where you are and to send their support in what you are dealing with.

Laura
Much thanks for your caring. I am on my way over soon to find 5 questions!

Ayoung
Thank you for your thoughts and prayers for Charli.

Yvonne
Thank you for stopping by and sharing wishes for health and healing

Rachael
Thank you for your healing thoughts , prayers and caring. It matters.

Ghost...
Love seeing you here on Charli's behalf...Thank you for your healing thoughts.

Michele.
Thank you for your positive support for Charli

Lyn
Thank you for your prayers and caring

K Lawson..
Glad to see you here for Charli..
Thank you for your warmth and support

Natalie
Thanks for the hugs for Charli and for your gentle spirit

Beech Bum
Thank you for stopping by on Charli's behalf

Lorenzo

Will do. Thanks for showing up for Charli

Nancy
Thank you so much

Judith

I appreciate you and your thoughts for Charli....and your deep caring for others

Thank you all
Linda

Shadow said...

yikes, that's not nice. far from nice!!! charli, prayers for you from me!!!

CathM said...

Linda. Thanks for posting this and giving us this insight as to Charli's struggles. I will pop into her blogspace now and drop her a line... as I know only too well how delibitating and awful a long-term illness can be.

FlyingRabbit said...

I will see Charli in face someday. And now I plan to draw a painting about Charli using my Wacom and PS. Never stop praying for Charli.

Linda, thank you for giving Charli support and warm. Best wishes to Charli, and best wishes to youl

Hayaah said...

Being new to the blog pages, this is a 1st for me, hearing of Charli... thank you Linda, for sharing...

To Charli: Reading your words of sheer will power, that brings you through your every day, simply leaves me in awe! Wrapping my mind around how you so positively overcome so much pain and discomfort, makes me ashamed of my little issues, when compared, that so easily bog me down. I pray that the Lord blesses you with peace and love, all of which you deserve, and continue to watch over you. May we all be inspired to better ourselves through the example of your diligence and strong faith. Ameen!

Catvibe said...

Charli-I had no idea you were even sick. I am so sorry that you have to endure the ravages of illness and associated pains. I am sending you healing vibes and prayers and celestial music to fill the places where negative thoughts would reside.

Linda-You are a wonderful empathic and compassionate person and I am really glad to know you.

matthew said...

Sorry to read about your health condition Charli. I hope that you will be well very soon. Sending you healing thoughts and vibes. Do take very good care of yourself.

Linda, thanks for keeping us update on Charli's condition! You the friend that we can always count on.

Christine

laughingwolf said...

charli, you're an incredible woman, i wish you success with the new doctors

thx for the intro, linda :D

Silver said...

She is one amazing girl!

Amdist of all- there's still so much hope, love and goodness all about her!

Thks Linda for posting this.

love and hugs enclosed.

artemis-of-the-eucalypts said...

I feel so blessed to have my health. May Charli find some respite and the honest good medical care she deserves.

Writer on Board said...

Charli....

Christina said...

I don't know Charli, although I would love to. Thank you for sharing her beautiful positive attitude with us.

Diane Vogel Ferri said...

This is so kind of you to include this on your blog. God bless.

Hybrid J said...

Charli, sorry about what you're going through. You're a very brave woman. Take care and I'm hopping over to your own blog now ...
Cheers! :)

~Sia McKye~ said...

What a loving person you are Linda to send warm hugs to your friend by way of comments of people stopping by.

Those with chronic illnesses don't get out as much. On their good days, they try to do things they love and be with people they love, on their bad days their world is very small. that's when you feel isolated and alone. That's when a person feels every pain and every worry. Having someone call, drop a note, say hi on the internet is like a ray of sunshine to lift you and remind you of spring...

Robot Nine said...

Linda - Great post. Charli is one of those so cool peeps she makes me wanna improve. Love the tribute and good word. I also have the care pages setup and send her my good wishes and warm thoughts.
I am also posting your stress illusions as we speak, or as I write. Jeez they move around a lot for me. I wonder...
Alan

Karen said...

Linda - How kind of you to post this and allow the writing community to send Charli our thoughts and prayers.

Charli - If you read this, you are in my thoughts.

Charli Henley said...

I have been reading everyone's comments here... I am overwhelmed with gratitude and appreciation. Linda, you're an amazing friend. Not many people in this world are like you - and all of us who are close to you know it. I am so lucky.

Thanks to everyone who is praying for me and thinking of me. And thank you to those of you who have stopped by my carepages. I have been sick a lot lately and I feel so supported by all of you.

I am very blessed.

Ghost Dansing said...

for Charli..... broken mannequin magic

jewelrygirl said...

Charli,
I hope you are doing better. I thought I posted on here a week ago, guess I didn't. If there is anything I could do for you, let meknow.
My mom had Lupus,Sjogren's and RA. I also have Sjogrens and RA. I know a little about autoimmune problems. You most definately need a good rheumatologist. Don't settle for second rate.

Email me if you would like to. Address is JewelryAndJunk@gmail.com

Please be well.

Much Love,
Jenny

Cynthia said...

Thank you for posting this letter
Linda, you truly are a kind and
generous soul.

Charli is one brave lady, I greatly
admire her stength and her continuing sense of humor. I will
never be so quick to complain at
all, in fact not at all, with the
help of the Holy Spirit, naturally.

I will keep Charli in my prayers so
that she receives a noticable amount of relief.

Thank you for making me aware Linda.

Mrs4444 said...

Sorry this is off-topic. I just wanted to say thanks for popping in today, and how's this for psychic: The solo ensemble judge who critiqued Kendall's song today had the last name of Socha--I kid you not!

Jacqueline Michelle said...

Thank you so much for the update on Charli. I've been wondering where she's been for the last little while.

She's in my thoughts & prayers & I wish the best for her.