I had an appointment Thursday with my rheumy. I went armed with a list of all the strange symptoms that have been happening to me lately, with dates and time of day attached, just to be as precise as I can in detailing how many times a week I have eyelid twitching, dizziness, nosebleeds or double vision.
After listening carefully for a few moments, his response was: "Yes, you need to see a neurologist." I told him I already have an appointment.
Then we turned to my lab tests. He said all were unremarkable, but I had too much thyroid meds. I was stunned. I am taking the lowest doseage, and have been for years. I have no shaking, out of control eating and losing weight, all the warning signs I had years ago when my thyroid went on overdrive and I nearly had a stroke. My rogue thyroid was dissolved with radiation, and I've been taking replacement hormones since.
So what the heck is going on? Well, thanks to my lupies on the Internet and Google, we came top the conclusion that my pituitary was spitting out too much thyroid. And one possibility that it's acting up is that Imight have a tumor.
A benign tumor,to be sure, as they are rarely cancerous, but I can see how all the symptoms fit. Now I just need to make an appt. with my PCP to get her "take" on this, and to keep my Dec. 2nd appt. with the neurologist.
Knowledge is power. On the other hand, "a little knowlege is a dangerous thing."
I'm trying not to depend on guesswork right now. I just want all these wacky symptoms to stop. If surgery is required, I read that the surgeon can go into the brain from the nose.
Wow. Modern medicine. But I'm still not there, yet. Just getting some information.
Even as I type this, another wave of dizziness has washed over me. Doesn't last long; I don't faint; I can keep my equilibrium and it soon passes. And, oh, yeah, the aura in my eyes. Often and lasting longer than they used to.
Oh, well. Can't do anything about any of this today. Just keep on keepin' on.
Maybe all this will stop as suddenly as it started.
We can still hope.
Lupus
Saturday, November 13, 2010
Thursday, November 11, 2010
Cognitive Issues -- Or Old Age?
I got a call last week from one of my friends, Judy, inviting me to a party at her house on the 11th. I dutifully accepted the invitation and marked it on my calendar. I thought she sounded kind of vague about details (what time, should I bring something? etc) but chalked that up to her being in a hurry.
So this morning -- the 11th, I call my friend Joyce who is one of those invited, and asked her if she would be going tonight. There was dead silence on the other end of the line.
Finally she stuttered, "I thought it was December 11th!" Then she said, "If it is today, I can't go because I'm feeling lousy."
So I thought I should call Judy and ask her when the party was....
And she said December 11th. Then she graciously said, laughing, that she "might have said November 11th, so don't worry about it, and you can still come over."
I called Joyce back and told her it was next month.
I've got to stop doing things like that.
Today is my rheumy appointment that I showed up for LAST month. That much I'm sure about. (I think.)
Lupus
So this morning -- the 11th, I call my friend Joyce who is one of those invited, and asked her if she would be going tonight. There was dead silence on the other end of the line.
Finally she stuttered, "I thought it was December 11th!" Then she said, "If it is today, I can't go because I'm feeling lousy."
So I thought I should call Judy and ask her when the party was....
And she said December 11th. Then she graciously said, laughing, that she "might have said November 11th, so don't worry about it, and you can still come over."
I called Joyce back and told her it was next month.
I've got to stop doing things like that.
Today is my rheumy appointment that I showed up for LAST month. That much I'm sure about. (I think.)
Lupus
Tuesday, November 2, 2010
It's Raining, and my body doesn't like it....
I almost dread the coming snow and ice season. I do bad enough in the rain, when my body reacts to the barometric pressure changes and makes my knees, wrists and neck ache all the time. So what's a Lupie to do?
Well, I could move to a dry climate.
I could take expensive drugs to dull the pain.
Or, I could just grin and bear it. Which I most often do. There's only so many medications I can take that won't interfere with my prescribed meds. So I usually take OTC meds, the cheaper the better. The Wal-Mart Pharmacy aisle is my friend.
I was told once that I should take a natural pain reliever: White willow bark.
Okay, I thought. I'll go see about it. In the olden days, white willow bark was used to treat any kind of inflammation. A "natural" aspirin, as it were.
However, I look at the Health Food Product: White Willow Bark, and it's sky high priced, like a 30 day supply for $30.00.
Then I mosey over to the aisle that has OTC products and look at a large bottle of aspirin. 100 aspirin for $4.00. I'm exaggerating, of course, but I don't really remember the costs involved.
Guess which one I chose?
Right.
Lupus
Well, I could move to a dry climate.
I could take expensive drugs to dull the pain.
Or, I could just grin and bear it. Which I most often do. There's only so many medications I can take that won't interfere with my prescribed meds. So I usually take OTC meds, the cheaper the better. The Wal-Mart Pharmacy aisle is my friend.
I was told once that I should take a natural pain reliever: White willow bark.
Okay, I thought. I'll go see about it. In the olden days, white willow bark was used to treat any kind of inflammation. A "natural" aspirin, as it were.
However, I look at the Health Food Product: White Willow Bark, and it's sky high priced, like a 30 day supply for $30.00.
Then I mosey over to the aisle that has OTC products and look at a large bottle of aspirin. 100 aspirin for $4.00. I'm exaggerating, of course, but I don't really remember the costs involved.
Guess which one I chose?
Right.
Lupus
Monday, November 1, 2010
I Was Asled to Share This.....
ROMANTIC COMEDY LOVE SIMPLE TO DONATE 10% OF DVD PROCEEDS TO LUPUS RESEARCH INSTITUTE
Film Lands International Distribution Deal With Synergetic
NEW YORK, NY, November 1, 2010 – Your Indie Films/Synergetic Distribution has acquired worldwide distribution rights for the film Love Simple, directed by Mark von Sternberg. The film will be available for purchase internationally on Tuesday, November 9, and 10% of the proceeds of the film will benefit the world renowned Lupus Research Institute.
The DVD version of the film will be made available through several worldwide online venues including: amazon.com, bn.com (Barnes and Noble), target.com, bestbuy.com and walmart.com.
Hailed by Variety as an “engaging neighborhood pic...with genuine flair and wit,” Love Simple is a coming-of-age romance where the lead character Seta falls in love after meeting, Adam (Francisco Solorzano) in a Brooklyn Laundromat; however, both must deal with lies and personal situations in order for their relationship to survive -- he lives at home caring for his sick father, and she has suffered from lupus her entire life.
“It made sense for us to help shine a light on lupus and raise funds for this vital organization, particularly in this year that saw lupus frequently in the news with Lady Gaga announcing a borderline diagnosis, and the heart-warming story of Snoop Dog’s daughter’s battle with the disease,” states von Sternberg. “Based on the overwhelming response we’ve received from the lupus community, the film accurately shows the often misunderstood symptoms and issues associated with lupus.”
In addition to Variety, the film has received glowing reviews from nearly a dozen lupus and chronic illness bloggers (see below), and will be featured as the lead story in the November issue of The Lupus Magazine, an online, world-wide publication for the lupus community.
“Based on the positive buzz the film has generated so far, pre-sales of the film have been strong,” said Robert Rangel, of Your Indie Films/Synergetic. “We look forward to working with the Love Simple team on helping spread the word about this wonderful film, and its efforts on raising awareness and funds for lupus research.”
The Lupus Research Institute (LRI) is the world’s leading private supporter of innovative research in lupus, and champions scientific, creativity and risk-taking in the hunt for solutions to this autoimmune disease. The LRI’s research strategy and results are changing the course of lupus research and bringing new hope to people with lupus around the world.
For more information about the film, visit www.lovesimplethemovie.com, or become a fan on Facebook at www.facebook/lovesimplemovie. For more information about the Lupus Research Institute visit www.lupusresearchinstitute.org. For more information about Your Indie Films/Synergetic Distribution visit www.synergeticdistribution.com.
Reviews of the film "Love Simple":
"An engaging neighborhood pic, with genuine flair and wit. The obstacles along the central duo's rocky road to coupledom are untraditionally somber: She has lupus, he's stuck at home caring for his wheelchair-bound father." Variety
"Definitely recommended...a great film helping a great foundation." Geoff Thomas, editor, The Lupus Magazine
“The inspiring and engaging film is a realistic portrayal of a lupus patient, and will serve as an invaluable way for us to raise awareness of a disease that is a leading cause of heart attack, kidney disease, and stroke among young women.” Margaret G. Dowd, Executive Director, S.L.E. Lupus Foundation.
"This movie is sorely needed. Love Simple is a huge gift, not only for Lupus sufferers but for their families and friends, and the world. Beautifully filmed, it is the first easily accessible media piece that I have seen to actually bring real awareness to Lupus." Julia Sherred, editor, www.geekypleasures.com
"A movie whose female lead has lupus - which may be the first of its kind! Check out their website. And spread the word!" www.despitelupus.com
"I think it is very relatable for many people. It deals a lot with dating, relationships, and family difficulties that can come with Lupus. I thought it was pretty accurate in its portrayal of Lupus." www.cureforlupus.org
"I just…watched the movie "Love Simple"... I loved it...It's definitely a great lupie movie." www.livinglupie.com
"I absolutely loved the film!" Matthew Sapp, editor, mattandlupus.blogspot.com
"The producers and directors did a GREAT JOB!!!!!" Jennifer Morrison, editor, lupuseveryday.blogspot.com
###
Lupus
Film Lands International Distribution Deal With Synergetic
NEW YORK, NY, November 1, 2010 – Your Indie Films/Synergetic Distribution has acquired worldwide distribution rights for the film Love Simple, directed by Mark von Sternberg. The film will be available for purchase internationally on Tuesday, November 9, and 10% of the proceeds of the film will benefit the world renowned Lupus Research Institute.
The DVD version of the film will be made available through several worldwide online venues including: amazon.com, bn.com (Barnes and Noble), target.com, bestbuy.com and walmart.com.
Hailed by Variety as an “engaging neighborhood pic...with genuine flair and wit,” Love Simple is a coming-of-age romance where the lead character Seta falls in love after meeting, Adam (Francisco Solorzano) in a Brooklyn Laundromat; however, both must deal with lies and personal situations in order for their relationship to survive -- he lives at home caring for his sick father, and she has suffered from lupus her entire life.
“It made sense for us to help shine a light on lupus and raise funds for this vital organization, particularly in this year that saw lupus frequently in the news with Lady Gaga announcing a borderline diagnosis, and the heart-warming story of Snoop Dog’s daughter’s battle with the disease,” states von Sternberg. “Based on the overwhelming response we’ve received from the lupus community, the film accurately shows the often misunderstood symptoms and issues associated with lupus.”
In addition to Variety, the film has received glowing reviews from nearly a dozen lupus and chronic illness bloggers (see below), and will be featured as the lead story in the November issue of The Lupus Magazine, an online, world-wide publication for the lupus community.
“Based on the positive buzz the film has generated so far, pre-sales of the film have been strong,” said Robert Rangel, of Your Indie Films/Synergetic. “We look forward to working with the Love Simple team on helping spread the word about this wonderful film, and its efforts on raising awareness and funds for lupus research.”
The Lupus Research Institute (LRI) is the world’s leading private supporter of innovative research in lupus, and champions scientific, creativity and risk-taking in the hunt for solutions to this autoimmune disease. The LRI’s research strategy and results are changing the course of lupus research and bringing new hope to people with lupus around the world.
For more information about the film, visit www.lovesimplethemovie.com, or become a fan on Facebook at www.facebook/lovesimplemovie. For more information about the Lupus Research Institute visit www.lupusresearchinstitute.org. For more information about Your Indie Films/Synergetic Distribution visit www.synergeticdistribution.com.
Reviews of the film "Love Simple":
"An engaging neighborhood pic, with genuine flair and wit. The obstacles along the central duo's rocky road to coupledom are untraditionally somber: She has lupus, he's stuck at home caring for his wheelchair-bound father." Variety
"Definitely recommended...a great film helping a great foundation." Geoff Thomas, editor, The Lupus Magazine
“The inspiring and engaging film is a realistic portrayal of a lupus patient, and will serve as an invaluable way for us to raise awareness of a disease that is a leading cause of heart attack, kidney disease, and stroke among young women.” Margaret G. Dowd, Executive Director, S.L.E. Lupus Foundation.
"This movie is sorely needed. Love Simple is a huge gift, not only for Lupus sufferers but for their families and friends, and the world. Beautifully filmed, it is the first easily accessible media piece that I have seen to actually bring real awareness to Lupus." Julia Sherred, editor, www.geekypleasures.com
"A movie whose female lead has lupus - which may be the first of its kind! Check out their website. And spread the word!" www.despitelupus.com
"I think it is very relatable for many people. It deals a lot with dating, relationships, and family difficulties that can come with Lupus. I thought it was pretty accurate in its portrayal of Lupus." www.cureforlupus.org
"I just…watched the movie "Love Simple"... I loved it...It's definitely a great lupie movie." www.livinglupie.com
"I absolutely loved the film!" Matthew Sapp, editor, mattandlupus.blogspot.com
"The producers and directors did a GREAT JOB!!!!!" Jennifer Morrison, editor, lupuseveryday.blogspot.com
###
Lupus
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