Photo by: John P. Ford
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.
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!