beltainelady: Scrumbella the Stilt Spirit (Default)
But truly, there's not much going on that doesn't fit into the 140-word status update on FB. And most, if not all of you, are on my FB.

Physical therapy continues apace. Hopefully, after a few more weeks I won't need surgery. I'd really rather avoid that, especially since I'll probably taken even longer to heal with the Fibro. I just want to get this under control so I can get back to doing what I want. I want to go back to the gym and go back to violin lessons.

We had a couple of people Will met through Model Mayhem over for dinner. A model and two photographers, and it just made me want to get back into modeling. I am going to do my best to work on losing some weight and getting back into shape. I won't EVER get back to my serious hardbody days, but if I can tone up and feel more comfortable, I'll be back in front of the camera. Helping Will with making backdrops and directing models and doing makeup and such also makes me want to get back into it.

I'm also wanting to get back into my Craft. I've been alone and essentially non-practicing for years now. I go to the occasional ritual with the guys in Atlanta, or to a festival but that's about it. So, I've volunteered to do a ritual and workshop at the 2011 Shenandoah Midsummer. I know, that seems like a massive jump rather than starting small but I've got so much experience doing public ritual that I'm actually MORE comfortable doing that than moving towards starting a coven. Especially since our Governor Bentley made the statement about only Christians being his brothers and sisters...I will remain quietly closeted here in Alabama. When the right people appear, I will consider starting up again. Small, slow steps toward being a BTW HPS, so I'll just work solitary and do public stuff here and there until it happens.

My narcolepsy has gotten out of hand. I've even tried increasing the dosage of my Ritalin, and instead it puts me to sleep. I've had to stop taking it and now struggle through my days, trying to stay awake at least enough to function. I'm rarely fully alert and the exhaustion presses so hard upon me. I have an appointment with a sleep specialist on Feb.2, so hopefully he'll put me on Provigil and I might be able to function again. I hope. I can't take this anymore. The fatigue actually HURTS. My eyesight is affected, and I can't tell if my prescription has changed or if it's due to the exhaustion.

*sigh* So, that's my life for the moment. Up and down, as usual.
beltainelady: Scrumbella the Stilt Spirit (Default)
I'm grateful to Dr. Sawyer for being the great doctor she is. I took Liana in to see her because she's been showing signs of Fibro. The doc tested her and checked her heart, looking for mitral valve prolapse, which has been linked to Fibro and other autonomic/autoimmune disorders. Liana does have MVP (which I also have), and possibly the beginnings of Fibro. She's been put on a light beta blocker for the moment, and we'll be watching the rest.

It's not good news, but I'm grateful for having a doctor that not only believes in and treats Fibro, but also researches and keeps up in all the being done. She's pretty fabulous, especially since she's at least 75 years old. I'm talking a SERIOUSLY little old lady.

In my own health news, it seems this latest flare is starting to let up. After yesterdays struggle with narcoleptic episodes, the allover pain is lessening, now down to my normal screaming spots.
beltainelady: Scrumbella the Stilt Spirit (Default)
I know you're busy and all that, but I'd like to ask one small favor. May I have a few good days where I'm not exhausted and burning in pain?

And, if you could, can you help Joker not to be such a klutz? I've now twice stepped on his foot, he's fallen off the stairs and he's slammed his head into the door. He needs to figure out how his body works.

I do want to thank you for having Harley finally learn where she can go potty -- and that's not in the house. And thank you for allowing Will's project to succeed.

But yeah, I'd really appreciate having a body that didn't betray me all the time. And please, allow it to be healthy for my trip up to Louisville.

Thank you,

Me

Oh, my.

Mar. 28th, 2010 06:23 pm
beltainelady: Scrumbella the Stilt Spirit (Default)
Pfizer to pay $142M for drug fraud
Sales of drug total $300M annually in Canada
Last Updated: Friday, March 26, 2010 | 3:28 PM ET Comments95Recommend88
CBC News

Pharmaceutical giant Pfizer has been ordered to pay $142 million US in damages for fraudulently marketing gabapentin, an anti-seizure drug marketed under the name Neurontin.

A federal jury in Boston ruled Thursday that Pfizer fraudulently marketed the drug and promoted it for unapproved uses. The jury sided with California-based Kaiser Foundation Health Plan Inc. and Kaiser Foundation Hospitals, the first to try a gabapentin case against Pfizer.

Data revealed in a string of U.S. lawsuits indicates the drug was promoted by the drug company as a treatment for for pain, migraines and bipolar disorder — even though it wasn't effective in treating these conditions and was actually toxic in certain cases, according to the Therapautics Initiative, an independent drug research group at the University of British Columbia.

The trials forced the company to release all of its studies on the drug, including the ones it kept hidden.

A new analysis of those unpublished trials by the Therapeutics Initiative suggests that gabapentin works for one out of every six or eight people who use it, at best. The review also concluded that one in eight people had an adverse reaction to the drug.

"The much larger majority of people will not get any benefit and many of them will have chronic neurotoxicity or poisoning of the brain," said Dr. Tom Perry of the Therapeutics Initiative.

Dr. Harry Pollett, a pain specialist in North Sydney, N.S., calls gabapentin a so-so drug with potentially serious side-effects for patients. These include drowsiness, balance problems, fogginess and edema, or swelling.

"Weight gain is a very common problem and I see that a lot," Pollett said.

The drugs represent a waste of money for Canada's health-care system, said Perry, who questioned why some doctors continue to encourage people to take the drug even though the patients are not benefiting.

"We have been using probably somewhere in the order of around $300 million a year in Canada recently and this drug has been overused since the late 1990s," Perry said. "So, do the math. It's probably well in excess of a billion dollars."

Pfizer defends its actions and its drug. The company has already been hit with $430 million in penalties and fines for fraudulently promoting gabapentin in the U.S.

Read more: http://www.cbc.ca/health/story/2010/03/25/gabapentin-ubc.html#ixzz0jW5a7uKt

I had been taking gabapentin for oh...3 or more years. *sigh*

Whine

Mar. 17th, 2010 08:09 am
beltainelady: Scrumbella the Stilt Spirit (Default)
I just saw a commercial featuring the guy who invented the chocks that replace pitons in rock climbing.

Dammit. I WANT TO GO ROCK CLIMBING. I want to go windsurfing. And hiking. And dancing. And horseback riding. And learn to ski. And walk around Paris, London, Rome, Berlin.

But I can't. I mean, I can try...but I'll pay for it dearly. I can barely walk the supermarket without pain. It takes days to recuperate from any exertion.

I WANT MY BODY BACK!!!! I want to be who I used to be: active and adventurous.

I hate Fibromyalgia. I hate my body as much as it hates me. Dammit, I want to be normal again.
beltainelady: Scrumbella the Stilt Spirit (Squirrely wrath)
I swear, I don't get a break. My COBRA premium is now 150% because I'm using the disability extension until I qualify for Medicare in October. I pay $541.88 a month, and that's after dropping my dental. I looked into private insurance, but because I have an existing condition, I will be denied. I don't qualify for the COBRA subsidy because I started prior to Sept 1, 2008. I don't qualify for the high risk pool because I have COBRA.

Will and I could get married, but the insurance premium he'd pay is about the same as I'm paying now, plus I'd lose eligibility for Liana's ALLKids program (state health for kids).

So I'm stuck paying out nearly half my monthly disability payment for my health insurance. Amazing how they can get away with it, isn't it? Thank the Gods I have Will, not just because he supports me financially, but because he supports me in all the other important ways as well.

*sigh*
beltainelady: Scrumbella the Stilt Spirit (Default)
Always playing catchup, it seems. It's hard being grateful when you're in such extraordinary pain.

Sept 13: I was grateful for Will's tolerance of my smoking in the bedroom. When I'm down for the count, there's no way I'd be able to go downstairs to smoke...and I still need to smoke. For now.

Sept 14: I'm grateful that I can talk to my family about what I need, and they accept and respond with love and understanding.

Sept 15: I'm grateful that I only have one more day to struggle through before I see a doctor. I can only hope that he's willing to refill my scripts and be willing to try others. I found him on the Fibromyalgia Association website, so it's a good chance that he'll be able to treat me the way I need.
beltainelady: Scrumbella the Stilt Spirit (Default)
I found this on the fibromyalgia community, and liked it enough to post it here so I can keep it.

The song was written by Rob Thomas for his wife, Marisol, who has lupus. I know that Will struggles daily with feeling helpless when I'm having a bad time, and now someone has put that feeling into words.


Oh what the hell, she says
I just can't win for losing
And she lays back down
Man there's so many times
I don't know what I'm doin’
Like I don't know now

By the light of the moon
She rubs her eyes
Says it's funny how the night
Can make you blind
I can just imagine
And I don't know what I'm supposed to do
But if she feels bad then I do too
So I let her be

And she says oooh
I can't take no more
Her tears like diamonds on the floor
And her diamonds bring me down
‘Cuz I can't help her now
She's down in it
She tried her best and now she can’t win it's
Hard to see them on the ground
Her diamonds falling down

She sits down and stares into the distance
And it takes all night
And I know I could break her concentration
But it don't feel right

By the light of the moon
She rubs her eyes
Sits down on the bed and starts to cry
And there's something less about her
And I don't know what I'm supposed to do
So I sit down and I cry too
And don't let her see

She shuts out the night
And tries to close her eyes
If she can find daylight
She'll be all right
She'll be all right
Just not tonight
beltainelady: Scrumbella the Stilt Spirit (Default)
Today's gratitude moment is brought to you by Flexiril, which allows my muscles to relax enough so I can sit or lie down without too much pain...but not to do much of anything else. Six of one, half-dozen of another.

Oh well

Aug. 7th, 2009 02:21 pm
beltainelady: Scrumbella the Stilt Spirit (Default)
I saw a doctor last week because I was sick and liked her so much I wanted to use her as my regular doctor. She's part of a walk-in clinic, but apparently they also take regular patients.

Today I went in for a pap smear, and got some prescriptions. Unfortunately, she can't prescribe my usual scripts because of the way their license is set up. I also pay the specialist copay rather than the PCP copay. Oh well, I've got a list of some doctors from the fibromyalgia association that I can check out. At least I got some meds to tide me over this flare. Also interesting to note that I run a fever when I'm flaring.

Gratitude moment: I still have a place I can go if I'm sick and need to see someone and the regular doctor doesn't have any slots open.
beltainelady: Scrumbella the Stilt Spirit (boobiethon)
It's really hard to be a good pet when your body doesn't want to cooperate. Fibro! BEGONE!!

I added my pictures to BoobieThon. Most of you have already seen mah bewbies of doom, but hey...if you can donate to a good cause, please do. Times might be tight, but the boobies are loose.

Oven still isn't fixed. Rent is due, so I'm getting some sort of discount for my inconvenience. Don't know what it is yet, but I found a link that with information that fixes the same sort of problem and forwarded it to the maintenance manager. He doesn't think it's the right error...so I'm going to try it myself. If I end up fixing my oven when they can't, I think I'll apply for a job.

I adopted another egg, poor abandoned thing. Adopt one today!

And it's brother/sister: Adopt one today!
I wanna see what I have!!!

Health Blog

Aug. 6th, 2008 11:35 am
beltainelady: Scrumbella the Stilt Spirit (Default)
I'm gonna start blogging about my daily health, so I can keep tabs on what's happening. I want to have a daily blow-by-blow so when I finish the disability application and get to TX and find new doctors, I can print it all out and show it...I won't remember each day anyway.

It'll be filtered to myself only, unless anyone wants to read it. If you do, let me know and I'll add you, but I don't imagine it's going to be too interesting.

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