Primary Biliary Cirrhosis is a mystery. Well, not really a mystery in that they know what it is, but they don't know what causes it. They know what doesn't cause it: alcohol and drugs are not the cause. And I gotta tell you, I'm classic: I look mostly healthy, although I don't feel it. Joints, bones and muscles hurt all the time. I'm always nauseated, and fatigued. Dizziness (not the dizzy blond kind) has become a recent feature. I'm about 40 pounds overweight, and nothing I do helps - and I don't overeat. Depression has been a huge factor. That's what the blood tests and the CT Scan have shown. I'm pissed off about it too, and don't know what stage I'm in at this point - it is very treatable if it is early; if it is late, I will have to get on a transplant list. And my brain is going right to late stages of this.
So. In order to keep me happy and in a state of cheery optimism, I am putting out a reminder to send me your images for this Saturday's Good Planets Gallery. Email me at jkblue AT cox DOT net as soon as possible - put your photos in an attachment -- and let's end 2006 with a reminder of how beautiful our planet is.
15 comments:
Oh, this doesn't sound good at all. I'm glad you are getting good medical care and hope things improve rapidly. I wonder if stem cell research would develop a complete cure. No help at the moment, but a possible future help. Take care.
Diva,
My heart really, really aches for you. I sure hope the stage is early enough for the ursodiol to work. Thinking of you my dear.
Your blog shows a person of energy, vivacity, and joy, full of curiosity as you travel the world. What a rotten deal for you - I'm so sorry. I'm pushing for early stage with quick relief. I wish you the very, very best.
You floored me with this diagnosis. Strangly enough, I have been thinking of you the past few hours wondering if your Fibro might have been officially announced? Now this...!
Let it bee the earliest possible diagnosis in the history of the disease! I hope you don't mind me asking if your health-care-coverage is good enough to cover the worst case scenario? If not, maybe a trip to India will be in works? You do know what I mean, don't you?
Oh crap... I don't even know what to say about this, Diva. I'm so sorry to hear the news, and when BabyGirl and I say her prayers at night after reading a bedtime story, we'll include you for some special healing help, if you don't mind.
Heres looking at an early diagnosis. It just has to be, because I won't except anything else!
Best of luck with the early stages I know you are hoping for. You just keep the Beanie in your mind and in no time you'll be getting good news. Hugs!
Peace Chick, I'm sure stem cell research would benefit people with this disease. Let's alert the President. Wait, he's an idiot. Never mind. :)
Karena, you know how ursodiol got named? Because it's produced in bear bile. Except not the form they perscribe, that's synthetic. Bears, oh, my god.
Pam, well, I can be sassy. I'm really truly pissed off, but from people I'm connecting with who have it (message board) they say that I will get a lot of improvement from that bear bile stuff - a lot depends on where I am with this, but they say that there is relief.
Pekka, I have decent health coverage, but it's the perscription drug coverage that might be at issue. I wonder if I will have to get drugs from Canada, and become a criminal like Robin Andrea's mom?
Tina, that would be quite kind of BabyGirl, and I thank you both!
Donnie, send in the Marines! Let's get cracking, eh?
Sumo, thank you. Beanie told me I had to post about it because she was too busy playing with her new stuffed animal, a cat.
Thank you all - you guys are my peeps, and quite kind. I appreciate the energy and focus we all have, and I cannot begin to tell you how much blogging has helped me survive the insanity of our government. I know you will help me through this too.
I'm adding my hope to all the hope expressed here that this has been caught in the early stages. I know you will keep us informed, and let us know if there is anything we can do. My mom is on a new drug plan with some Medicare D HMO thing and has stopped getting her meds from Canada, but she'd do it all again if she had to!
Take care, you're in my thoughts. I'm sending a pic this morning.
Sorry to hear that you aren't feeling well physically. You sound strong spiritually, and that goes a long way in the
healing process. You're in my thoughts.
Robin, got the picture, it's wonderful. Glad your mother has left the criminal element.
AM, thank you for the photo - it's great. And your kind words.
Here's to an early diagnosis, a long life and lots and lots of time with that sweet little grandaughter - painfree.
At least the Bears are good for SOMETHING.
Good luck to you with this disease. What a dreadful diagnosis to find out about. I hope they caught it early.
Hope the meds and supplements help you make a quick recovery. Thinking of you.
May the New Year bring you Health and Peace
DivaJood, dammit, I don't know why I didn't stop by sooner. So I didn't know... I am so sad you are ill and I really truly hope you start recovering with the treatment. What crappy news for you over the holidaze! Damn. Enjoy your vaca anyway and please report back ASAP!
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