After careful consideration--and a lot of discussion with friends in the healthcare industry--on Sunday morning, with CFIDS* symptoms flaring loudly, I got up at 4:30 A.M. to stand in line to get the H1N1 flu shot.
I don't usually get a flu shot, but this one is different. My reasons for getting the H1N1 vaccine are that I have a double-whammy risk factor (autoimmune disease + asthma), and because I can name four friends of friends who've died from H1N1. Since I'll be be exposed to large crowds at shows I'll be attending this winter and spring, the odds lean heavily toward protecting myself.
(Sidebar: The sickest I've ever been was the day after receiving a handshake from an artist's fan who informed me--after shaking my hand--that she'd dragged herself out of bed with a high fever because she couldn't stand the thought of missing the show. Then she ran off to the ladies' room to throw up. Thank God no one let her anywhere near the artist; it was a fast-acting bug with the power to cancel shows and put people out of work.)
By the time I arrived in line for the vaccine clinic a little before 6:30A.M., there were already a few hundred people in line...enough to pack at least a rock club. By the time the doors opened after 8, there were thousands. I couldn't see the end of the line, as it wound all the way around the block. I couldn't see the beginning of it either, or how far we'd have to walk to get into the building where the vaccination clinic would take place. My best friend, who went beyond the definition by coming with me to stand in line, volunteered for a front of the line reconnaissance mission. One of L.A.P.D.'s finest was standing at the entrance of the building to be sure no one cut the line, with more on hand for crowd control.
The lady in front of me had a cane. There were some elderly people (who came in teams of two, so that one could stand in line while the other sat resting for a while on a low wall across the street), and a lot of pregnant women, and many babies who'd been roused from their warm beds to stand in the California morning air, which, despite its warm reputation, can cut to the bone if there's a damp wind coming off the ocean. I couldn't help wondering what would become of the people who weren't well enough to stand in line for hours that day. There was no handicapped access, though I did see two healthcare workers helping an elderly lady to the vaccination room.
The people in line, for the most part, were not poor; just uninsured, like me, or in some cases they'd come in search of the vaccine because their regular doctor didn't have it yet.
Welcome to the U.S. healthcare system.
Not that I'm not grateful to be able to get the shot at all; I'm currently without a regular doctor and would probably be out of luck if I had to rely on a doctor's office delivery system. But my friends in Europe didn't have to go through this; they simply went to their regular healthcare provider, with no waiting, no fuss, no getting out of bed at O'dark:30 to stand in a long line around a cold football field. And everyone is covered. But I digress. Back to our U.S. vaccine clinic...
After a while, when the vaccine began to run low, pregnant women were pulled from the line and admitted first. The rest of us were asked to fill out questionnaires to determine our medical priority. It began to feel a bit like a poker game: he's 29, she's got such and such, autoimmune plus asthma beats a pair. My survival mode kicked in, and although I answered the questions truthfully, I highlighted the answers that would be most helpful in getting me in by marking them with a very large X instead of the checkmarks I usually use. I also hoped that the low grade fever I'm used to having, but which could bar me from getting the vaccine, would make a hasty exit. It did.
After a check of my paperwork by several of the clinic workers, I was admitted to the vaccination line. Autoimmune people are sometimes advised to get the "thimerosol free" version to give our systems less to try to deal with. But the clinic was running low on it, so I was sent to consult with one of the doctors. He said there was still a small trace amount of thimerosol in the "thimerosol free" version, which what with my flaring CFIDS symptoms, scared me a little. Then he said, in the direct manner I use when a client is headed for legal trouble, "You're autoimmune. You need to have this" which scared me more. Ahh, The Power of the White Coat. Attitude adjusted, and paperwork OK'd for "thimerosol free", I got my shot.
It was 11:00A.M.
*In the U.S., the autoimmune disease I have is called CFIDS or CFS and has a very vague diagnosis and treatment protocol which in the U.S. often focuses more on fatigue than on other, more serious symptoms of the disease. In the UK and Canada, what I have is called Myalgic Encephalomyelitis (M.E.), which has a more specific diagnosis and treatment protocol that focuses more on the serious symptoms such as the cognitive, brain injury and respiratory aspects of the disease. Since writing this entry I've joined the campaign to change its name in the U.S., because eliminating the word Fatigue from its title would help provide better medical care, research, and funding for patients in the U.S., as well as better understanding of the disease by the general public.
MusicBizAdvice.com Editor-in-Chief Randi Reed shares music industry tips, advice, editorials, and observations on the music business. Topics include songwriting, artist management, booking, concert promotion, publishing, indie music, DIY, and other advice for musicians.
Showing posts with label autoimmune disease. Show all posts
Showing posts with label autoimmune disease. Show all posts
Wednesday, November 11, 2009
Wednesday, November 08, 2006
Letter from MusicBizAdvice.com Editor in Chief
Los Angeles, CA
Wednesday, November 08, 2006
Hi Everyone,
You may have noticed that recently when it comes to site updates, our main site, MusicBizAdvice.com, has not been as active as we usually are.
Because I value you as readers and as people, I want to tell you why. Some of my advisors would prefer I tell you a story about having to go out of town on behalf of a client or something. But MusicBizAdvice.com is a private company (mine) with no outside stockholders to keep happy, and you deserve the truth.
First off, rest assured, we’re not going anywhere. As many of you know, for over ten years I’ve battled the illness CFIDS (Chronic Fatigue Immune Dysfunction Syndrome, sometimes called CFS). I won’t go into a rundown of symptoms, (you can read more in my CFIDS Q&A), but Seabiscuit author Laura Hillenbrand and Flea of the Red Hot Chili Peppers have it, too, and Cher and Stevie Nicks have battled similar illnesses. (CFIDS is in a category of illnesses known as autoimmune disease. Rheumatoid Arthritis, Multiple Sclerosis, Lupus, Grave’s Disease, Epstein-Barr, and chronic Lyme Disease are other diseases in this category.)
As often happens with immune system diseases, recently the CFIDS Monster had enough of my working around it and decided to raise its ugly head and get noticed by intensifying the symptoms I’ve become accustomed to (and throwing in a few I hadn’t had for many years).
One symptom, something I call “CFIDS dyslexia” for lack of a better term, makes it difficult to write. It’s been years since I last experienced this, and I hope you’ll bear with us during the longer period it takes to post new material while we regroup over the next several weeks, rally the staff, and give my new vitamin regimen a chance to do its thing. Meanwhile, there will be new material trickling in, so check back.
But, I reiterate: we’re not going anywhere. And the CFIDS Monster, colossal pain in the a** it may be, will not win. After all, there’s always an upside: on a bad day my number comprehension is off too, so having me order lunch is good comedy. Maybe we can get Vegas involved and have people take bets on where each day’s delivery ends up? Just kidding.
As you can see, my sense of humor is in perfect health. …Comes in handy in the music business, as well as for putting the CFIDS Monster in its place. Thanks, as always, for reading MusicBizAdvice.com. (Thanks too, to JH and DW for their assistance in writing this.) And never, never, stop working toward making your dreams come true.
Randi Reed Editor in Chief, MusicBizAdvice.com
http://www.musicbizadvice.com
Copyright 2006 Randi Reed and MusicBizAdvice.com. All rights reserved.
Wednesday, November 08, 2006
Hi Everyone,
You may have noticed that recently when it comes to site updates, our main site, MusicBizAdvice.com, has not been as active as we usually are.
Because I value you as readers and as people, I want to tell you why. Some of my advisors would prefer I tell you a story about having to go out of town on behalf of a client or something. But MusicBizAdvice.com is a private company (mine) with no outside stockholders to keep happy, and you deserve the truth.
First off, rest assured, we’re not going anywhere. As many of you know, for over ten years I’ve battled the illness CFIDS (Chronic Fatigue Immune Dysfunction Syndrome, sometimes called CFS). I won’t go into a rundown of symptoms, (you can read more in my CFIDS Q&A), but Seabiscuit author Laura Hillenbrand and Flea of the Red Hot Chili Peppers have it, too, and Cher and Stevie Nicks have battled similar illnesses. (CFIDS is in a category of illnesses known as autoimmune disease. Rheumatoid Arthritis, Multiple Sclerosis, Lupus, Grave’s Disease, Epstein-Barr, and chronic Lyme Disease are other diseases in this category.)
As often happens with immune system diseases, recently the CFIDS Monster had enough of my working around it and decided to raise its ugly head and get noticed by intensifying the symptoms I’ve become accustomed to (and throwing in a few I hadn’t had for many years).
One symptom, something I call “CFIDS dyslexia” for lack of a better term, makes it difficult to write. It’s been years since I last experienced this, and I hope you’ll bear with us during the longer period it takes to post new material while we regroup over the next several weeks, rally the staff, and give my new vitamin regimen a chance to do its thing. Meanwhile, there will be new material trickling in, so check back.
But, I reiterate: we’re not going anywhere. And the CFIDS Monster, colossal pain in the a** it may be, will not win. After all, there’s always an upside: on a bad day my number comprehension is off too, so having me order lunch is good comedy. Maybe we can get Vegas involved and have people take bets on where each day’s delivery ends up? Just kidding.
As you can see, my sense of humor is in perfect health. …Comes in handy in the music business, as well as for putting the CFIDS Monster in its place. Thanks, as always, for reading MusicBizAdvice.com. (Thanks too, to JH and DW for their assistance in writing this.) And never, never, stop working toward making your dreams come true.
Randi Reed Editor in Chief, MusicBizAdvice.com
http://www.musicbizadvice.com
Copyright 2006 Randi Reed and MusicBizAdvice.com. All rights reserved.
Labels:
autoimmune disease,
CFIDS,
CFS,
music business,
MusicBizAdvice.com,
Randi Reed
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