Chronically Fabulous

Self-Esteem: "What did I do to deserve this?"

2009-02-23T12:05:00.003-07:00

From the time of Job in the Old Testament, it's only natural that at some point for the person who is beset with chronic illness and all the bs baggage that comes with it, cries out:

"What did I do to deserve this?"

It's also a natural law that the questions you choose to ask determine the answer you will get.
If you ask, "What did I do to deserve this?", you invite the demons of self-abuse to give you answers.
You will open yourself up to recriminations over the past (I should have gone to the doctor sooner, I shouldn't have played rugby and sustained injuries, I shouldn't have travelled abroad and gotten malaria, I should have eaten only organic foods.... and so on and so on....)

Unfortunately, today in America there is a huge industry and culture based on telling people who are sick that they did something to deserve illness. There are doctors, frustrated by being unable to cure an illness, who seek theories that blame the patient for getting sick. There is a huge industry of self-help pop psychology that tells the patient that they are to blame (you have a bad attitude, you are negative, you haven't forgiven some a**hole that hurt you in the past, blah blah blah). Then there is an industry of "natural health" proponents who say you are ill because you don't follow their diet, buy their blue-green algae, etc. Even more confusing is the fact that there are so many "natural health" diets and products, and they contradict each other and cancel each other out. You should eat a diet high in animal protein vs. you should eat only vegan raw foods vs. you should eat only vitamin smoothies vs....... etc. etc.

OF COURSE people with Fibromyalgia and Chronic Illness want to and should seek out all techniques (medical, psychological, naturopathic) to improve their health and make their lives more meaningful!

But the dark side to this is that in approaching with an "what did I do wrong?" attitude, we open ourselves up to BLAME for our illness. And the self-blame feeds into the depression, anxiety and stress that clearly makes Chronic Illness WORSE.

The truth is.... none of us is perfect. Even saints have made mistakes and done things they regret. Mother Teresa did not follow the Atkins Diet or use supplements. Hardened criminals can be psychologically messed up, full of "unresolved issues" but still have rock hard, strong, predatory, healthy bodies. If we search in anyone's past, with an attitude of blame, we can find something they did that could be a cause of chronic illness. But not all of those people did get sick. And the people who did get Fibromyalgia did not live any worse lives than those who stay healthy.

"What did you do to deserve this illness?" Nothing, because nobody deserves Chronic Illness.

When you are tempted to fall back into the addictive mindset of "What did I do to deserve this?", try replacing it with:

"What can I do now to make my life the best it can be?"

Now THAT question will lead you to better quality answers, answer that will lead you to self-care, hope, and appreciation of what you have, without shame and blame.

Get a Goat!

2009-02-04T14:27:00.004-07:00

There is an old parable in Eastern Europe, about a man who goes to the Wise Man to complain that his life is overwhelming. "I work full time at a stressful job, then I come home and I have to deal with my bossy mother-in-law, my stressed-out wife, 3 crazy kids running around screaming, the dog barking. I don't have a moment's peace. What can I do?" The Wise Man replies, "Adopt a goat." This is very strange advice, but after all, he is "the Wise Man," so the man buys a pet goat at the market and brings it home. A week later he is back at the Wise Man's Door. "What were you thinking? My life is worse than ever. My wife is yelling at me for buying that goat, the dog keeps chasing it around the house and knocking everything over, the goat chews up everything in my home, it has torn up my garden, eaten my favorite clothes, ripped up the sofa, the kids keep crying when the goat knocks them over. Ever since I followed your advice and got a goat, my life is chaos!" So the Wise Man replies, "Get rid of the goat." The man sells the goat at the market to another buyer and goes home. A week later, the Wise Man runs into him and asks, "How are you doing?" "Oh, I'm doing great! My family is so happy every since we got rid of that goat. Now when I come home, my wife is happy to see me because she doesn't have to chase after that goat anymore, the mother in law is just her usual self now that she's not complaining about the goat anymore, the kids are running around yelling and playing, the dog is just his usual mellow self. I come home to a happy household and it feels so peaceful without that goat. Thanks for your great advice."

"Get a goat" is shorthand for that moment when you feel that life is overwhelming, and then you add something even more crazy for a short time, and by comparison, your usual overwhelming life seems manageable.

In keeping with that, in November I got a 'goat.'

This goat came in the form of year old female rescued 68-lb mini Presa Canario dog.
I went to donate some of Akasha's old stuff to a wonderful rescue called Mariah's Promise. While there, our of sheer morbid curiosity I went to look in the cage of a Presa Canario.

At that moment, the only thing I knew about Presa Canarios was that a couple of them were responsible for killing a woman in San Francisco. I had always said I would never go near one of those dogs.

Then Bella came out of her cage, and our eyes met.

Less than a week later, she was living in my house and sleeping in my bed.

Love makes you do crazy things, like foster a year old dog with boundless energy who was not toilet trained, not accustomed to living inside a normal house, who acted like a wild hyena.

But she was sooooooo cute and loveable and funny. She was trying so hard to be my best friend, to show me that she was the best dog ever and to learn all about this new world she was in. And I was trying to both socialize her to the new world of being a pet dog, and train her in the basics of pooping outside, walking on a leash, etc.

But she was definitely a GOAT.

Despite my efforts to toilet train her, she managed to poop on my carpet at least once a day.
She somehow got ahold of my prized Ugg boots and chewed holes in the soles.
She peed in her crate, filling the air in my bedroom with the stench of urine.
She attacked my big dog Luca, chewing up his face so that he still has scars, and resulting in the only true dogfight I have ever seen.
She harrassed little Ozzie off all his hiding places, even squeezing herself behind the sofa and onto the windowsills.
She grabbed the tablecloth and pulled it with her mouth, with a full place setting and burning candles on the table.
She chewed all the screws out of my desk so that it now is just held together with glue and faith.
She ripped my CD's out of the entertainment center and crunched them up in her big jaws.
She rubbed against the walls to scratch her back like an elephant and broke electrical socket covers off.

Each moment of the day was chasing after her and trying to divert her to non-destructive games and toys. I could never quite anticipate what she would come up with next.

As a Christmas Miracle, Bella found her new home on Christmas day. The best doggy home possible, with kids to play with and a mom who is a professional dog trainer and knew exactly how to handle her. She is doing great and in fact she is a model citizen. I think that she is going to be a showcase for what a good dog trainer can do. Actually, I love and miss that wild child Bella, but I know that she has a much better life now, and that is what a good foster mom is supposed to do for their foster dog: get her ready for a lifetime of love with a new family.

Now, even months later, I have a whole new attitude about my formerly unmanageable life. I wake up and make my morning coffee and take my pills with a sense of gratitute that I don't smell any Bella accidents. What was formerly depressing silence I now see as peaceful quiet. My own two dogs (I used to think I couldnt deal with them, having Fibromyalgia and being so tired) are remarkably undemanding compared to the Energizer Bella. I'm still amazed at how much I appreciate my life now, after dealing with her for a month.

"Goat Therapy" is certainly a radical solution, like electroshock. I can't say I recommend it. But, I am determined now to see if I can use the crises that come up in life as a way to "get a goat" and then really enjoy the relative bliss and order that comes when you experience simply a little less chaos.

Emotional Kung Fu: The Block

2009-02-03T08:27:00.002-07:00

So there is this new "theory" about Fibromyalgia making the rounds that says that the reason people with Fibromyalgia complain about pain so much is that they are just super-sensitive to pain, and so they are at the doctors all the time complaining about pain that non-fibro people just deal with uncomplainingly. Even the New York Times is guilty of publishing an article in their health column promoting this message. While this theory may have originated in a highly scientific study of pain receptors becoming over-activated by over-stimulation, by the time it gets watered-down to the jerk on the street, it goes like this: if you have FMS pain, you're just an oversensitive complainer.

Now, this theory is insane. There is no correlation between over-sensitivity to pain and FMS. I personally have a very high pain tolerance. Before I was diagnosed with FMS, doctors were always exclaiming to me that they were shocked by my high pain tolerance, that I refused pain medicine where others begged for it, that I could tolerate all kinds of procedures without flinching. I still hear that from doctors, rolfers, shiatsu practitioners.

It took me years to be diagnosed with FMS because I didn't complain about pain. I didn't even consider the way my body felt every day to be worth mentioning.

This is also true of many female friends I have with FMS and other pain-related illnesses.

On the other hand, there are people with FMS who are the opposite, who were born with very sensitive bodies and experience pain intensely. Given how painful FMS feels to me, I can only image the hell on earth it is for someone who is hypersensitive. If you are one of these hyper-sensitive people, then my heart goes out to you, and please use the example of "your friend, Miss Chronically Fabulous, who has a high pain tolerance" to refute any suggestion that you are overreacting to FMS pain.

Those of us 'tough girls/guys' with chronic pain conditions may have certain things in common.

First off, some of us were born with less sensitive nervous systems (read Dr. Elaine Aron's "The Highly Sensitive Person" for a great non-medical description of the difference in nervous system response from birth.) That gave us a genetic advantage to dealing with pain (though as Dr. Aron points out, there are other genetic advantages to being sensitive).

Second, a lot of us grew up in families that prized toughness and did not pay any attention to complaints about pain. Friends have described this in various ways: "I grew up on a farm," "My family is hard-drinking Irish", "I was the only girl in a family of boys" -- regardless of the outer conditions, from an early age we were taught to ignore aches and pains and injury. We might have been ridiculed for "whining" or rewarded for gritting out teeth and playing through the pain. I'm not saying this way of child-rearing was a good or bad thing, just that from an early age the response we got from our immediate role models shaped how we internalized pain signals, and we learned to keep our mouths shut. It became an automatic response that we didn't even realize was going on.

Third, some of us spent years in physical training which further taught us to ignore pain. We enlisted in the military, went through basic training and served in difficult conditions. We were ballet dancers (forget the tutu - in terms of pain and injury, ballet is on a par with rugby.) In my case, I spent years studying martial arts, desensitizing my body to pain.

So when we tough types got FMS, we didn't report the pain. We kept our mouths shut for years. We were embarrassed to admit that we were unable to overcome the pain on our own. We still under-report our pain levels because we don't want to be 'wimps.'

So, when WE say FMS hurts, then dammit it IT HURTS!!!!!

Of course, it takes way too long to explain all of this to the person who is standing before you, accusing you of just being too sensitive (while they, of course, are implying that they are not so sensitive). So it's time for the Emotional Kung Fu move of the day: The Block.

Sometimes the quickest response to an attack is a simple direct block. More effective than flailing away and taking hits. Throw a strong block in the way of the attacker, and they may very well retreat, confused. This gives you an opportunity to let them know that you are not going to let them continue to attack you, to set some boundaries, or to walk away.

If the "attacker" says something along the lines of, "You know, the rest of us have aches and pains too, we just keep going," then you can block like this: Raise your eyebrows, roll your eyes, or just smile kindly and knowingly to show how you can see through them and say, "Everyday aches and pains? Please! If you had Fibromyalgia pain, you'd be curled up in a ball, screaming and sobbing and mainlining Oxycontin." Then just brush them off and walk away, or turn back to your magazine or whatever - the conversation is over. Generously give them some time to think about it, and maybe they will think about the kind of pain you are really in.

Hugs to all of you, Chronically Fabulous

Fibromyalgia Fever Dreams

2009-01-25T11:04:00.002-07:00

In a really bad 'episode' of Fibro, I am incredibly fatigued and my body feels like achey and feverish as if I'm fighting off the flu. I lie in bed and drift off to sleep for a few hours. Then I'm awake again -- severely fatigued -- but lying awake. My mind is awake but my body is still too tired to move.

This is when the Fibro Delusions begin.

In my Fibro Delusions, time seems to move SOOOOO SLOWLY while I am in bed, and so meanwhile I start to believe that I could get SO MUCH done if only I were able to get up. The longer I spend lying around, the more it seems that if I were well, I would have been a whirlwind of productivity and nothing could stand in my way.

This is the Mind-Game that FMS plays on us. To believe that FMS is the only obstacle, the only thing stopping us from achieving the impossible, and that every other able-bodied person is an overachiever by definition. The mind always moves faster than the body, and when only the mind is moving, untrammeled by the physical body, then everything goes by in a blur of imagined activity.

Every individual's Fibro Delusions take on the attractive form of the creative works that individual most fantasizes about accomplishing. In bed, trapped in their own minds, some compose symphonies, some film Oscar-worthy movies, some write novels. My mind runs to business, so in my fantasies, I am creating and marketing a creative new product or service.

In the first few years that I would get these delusions, the crazy fever dream voice would say, "Come on, you can at least write all this info down -- later when you are well, you will have started this project." I would drag myself to my computer, and try to write an outline, but just the effort of holding myself upright and trying to organize my thought would have me keeling over at the keyboard until I had no choice but to drag myself back to bed before I ended up falling asleep on the office floor.

Now, I still can't turn away from the illusions of the fever dreams, but at least I know they are illusions, so I confine myself to silly business ideas, that I can at least recognize as humorous and so just amuse myself instead of torturing myself with the ideas that will never come to fruition.

I post them here just in case someone else comes up with the idea, and I can document that at least I thought of it first.

First my brain, goaded by my constant fear that I am losing productive time when I am sick and therefore will be in financial disaster when I wake up, tries to come up with ways that people will pay me for doing what I would do anyway. Here we go:

Idea One: "The Coffee Kids"
Did you know that some pseudo-celebrities are paid huge amounts of money just to show up at certain nightclubs, because their being there makes it a "hot spot" where other people will be clamoring to spend their money? Ergo, with all the coffee houses competing for your java cash, what makes one place more hip than another? Enter the "coffee kids" -- the attractively dressed, sparkling coffee-drinkers who will sit in the window of the coffeehouse, chatting, writing poetry and drinking coffee. By positioning myself and a cadre of my cutest, funest friends as the new "coffee kids", I'll get paid for showing up at a coffeehouse and drinking a latte for all to see. Let's see, if I collect $150 per appearance (to start out), and I drink 3 cups of coffee a day...... my troubles are over. Then add in product placement by carrying a cup with a logo on it, and licensing fees from all my associates...... bingo.

I fall back asleep for another 3-4 hours, relaxed to know that my money troubles are solved, just as soon as I feel well enough to drink coffee again.

I'm awake again now, tossing and turning in a pool of sweat. But actually what has woken me up is shivering.... I've got alternating chills and fever. It is a distinctly un-sexy situation. But sex sells, doesn't it? I have to find some way to tap into the lucrative adult-products market. Ah, here we go..... a line of licensed celebrity talking vibrators. With every celebrity living or dead licensing their voice to phone calls and products, and the cheap production of audio chips for greeting cards and mass-produced molded plastic adult products. Now we just need a celeb with a large female fanbase...... Elvis! Imagine "The King" model serenading you intimately with "I'm all Shook Up." That should be good for a couple million on the novelty value alone.

I fall asleep before the bottom falls out of the market (not a good visual image for that product line.)

When I wake up, I'm hungry. What did I eat today? Um, 8 oz of rice milk at 3 am. That should explain the sticky taste in my mouth. I have a bottle of water by my bed, which I drink to try to rehydrate. I keep bottles in the fridge for moments like this, when my hands shake so badly and my muscles jerk around so that I keep dropping things. The water isn't enough. I stumble to the kitchen, feeling even colder all covered in sweat. I know I won't clean anything up, so I look for the easiest thing to eat. Peanut-butter straight out of the jar? No, that's what I ate all day yesterday, the spoon is still there. Try to push harder: I'll open a can of vegetable soup. Get some nutrients. I open the can with a can opener. How did I manage to spill that much? I drop a napkin on the mess. This should be reheated in a pot, but the last time I did that I fell asleep while it was cooking and it all burned. I take a fresh soup spoon and eat the soup room temperature out of the can. It is disgusting. Now I remember why I ate the peanut butter yesterday. I set everything back down on the counter, trying not to think about all the clean-up I'll have to do when I feel better.

Back in bed, I lie there wishing I had the energy for a shower to rinse off the sweat. Later... later... later I'll be able to do anything, once I'm well again.

Several days later, I'm back to as healthy as I get. It's taken me a few days to clean the house up again and feel back to somewhat normal. Then, I sit down at the computer to write this post. Just typing without editing (all I do here) takes me 45 minutes.

Sigh.... I'm back in Real Time now, where physical creating takes longer than thinking. I almost wish I were back in the confines of my fevered brain, where I can make anything happen.

"What Do You Do?"

2009-01-24T16:58:00.003-07:00

The standard American question when meeting someone for the first time is "What do you do?"

It's the question I dread now, that I am fully disabled.
"What do you do?" really means, "What is your job title?" and depending on your answer, you will be ranked and classified based on status and coolness.

This is the question I dread now, that I am fully disabled.

I can use my previous job title: "I'm an attorney." But this is inaccurate and just leads to another set of questions about where I work, and if not, am I looking for work..... all answers that lead back to explaining disability.

I can say, "I'm on disability" but this comes with the inevitable loss of status and distancing.

I can fudge and say, "I'm a writer," which is sort of true, and besides most writers are always working on some big opus and you don't expect it to be published or readable soon.

I can lie outright and just say something ridiculous, because nobody will ever know the difference. "I work for Homeland Security. Sorry I can't tell you more." But I'm not a good liar.

Lately I've taken to saying fake job titles that are true to describing my condition.
"I'm a stay at home mom." OK, I'm not married and I don't have any kids -- but why should that preclude me from having this job title? I'm a pioneer, breaking down that false barrier!
"I'm a circus ringmaster." Not literally, but that's how my life feels a lot of the time.
"I'm a healthcare researcher." Well, I do spend a lot of time doing this, and I know a lot. It's not my fault that the doctors refuse to pay ME for contributing to their knowledge.

If anybody with a disability has a better way to cope with the "what do you do?" question, please let me know.

Perhaps I will take to saying, "I'm a Disability Activist." Because that's like saying, "I'm on disability -- and I'm not apologizing for that fact!" Fair warning.

Help -- I caught the holiday spirit!!!

2009-01-08T09:36:00.002-07:00

Usually when I am blog-silent for a while, it is due to my getting sick, either with the primary FMS or a secondary infection that my messed-up immune system was unable to ward off. But in this case, I've been gone for nearly a month and I'm going to blame it on catching something I've never caught before -- the Christmas Spirit.

I'm kind of embarrassed about this. Not to be a Scroogette, but I thought I was too cool for Christmas -- not the religious holiday, which I observe, but the public fuzzy feel-good festivities with their tacky red and green color scheme. But this year, I caught the generosity-gratitude-hope spirit of the holidays.

And it knocked me speechless.

I do have a lot of things I believe in fervently and take seriously -- religion, love, kindness, justice -- but let's face it, writing about that stuff comes off pompous and boring. Most times when the beauty of the universe moves me to tears, it's just a side effect of medication or a symptom of PMS.

My credo is: if you don't have something sarcastic to say, then don't say anything at all.

My gosh, it's really hard to write with absolute sincerity about kindness and love and hope without sounding like an idiot. I was afraid that if my friends who have known me for years read me babbling about the stuff that has touched me over the past year, it would be so out of character that they would assume I was having a nervous breakdown and have me committed.

I don't know how to write about the things that really touch me without somehow cheapening them. Anything I say in love and gratitude seems inadequate. All I can do right now is write a list and hope someone else can fill in the blanks:

Little old ladies (and men) who use their meager Social Security checks to feed homeless animals are the unsung heroes of our communities
Sitting writing my Christmas cards, I was overwhelmed by how many people I really missed and wanted to connect with, many more than I had energy to send cards to
I am so lucky to have friends and family who care about me and help me
So many people tell me stories about their own illness, or caring for a loved one with an illness -- and I am amazed at their grace and bravery and generosity
And, like many Americans, I was moved by the unlikely hero Brenden Foster (whose video you have probably seen, but I am reposting it again in case you have not)

http://www.youtube.com/watch?v=c-vaGctUJJY

Last deep thought of the season: Puppies are cute!

Whew, hopefully the fever has passed and I can get back to my usual griping again.

Happy New Year everyone

The Courage To Nap

2008-12-01T16:29:00.003-07:00

When I tell people about getting the horrible diagnosis of a serious illness, a lot of time they respond the way that people respond to cancer or other short-term illnesses.
Trying to be encouraging, they say stuff like this:

"You've got to FIGHT the illness
You can't LET the illness WIN
Don't GIVE UP, Don't let this diagnosis prevent you from doing anything you want, climbing any mountain......
TAKE CHARGE of your health and medical treatment, ADVOCATE for yourself, RESEARCH treatments, DEMAND better health care....."
(and then a whole bunch of stuff I'm supposed to be doing, like....)
"You've got to exercise, cook all organic foods, do this treatment, that treatment, the other treatment....."
and my personal favorite "Give 110% until you BEAT this illness"

Whew! I'm tired just thinking about all that activity, all that fighting, beating, resisting, struggling. And then when I just look sad and overwhelmed and guilty about all the stuff I should be doing, I'm afraid I come across as "giving up."

It's one more pitfall of living in our Work-Ethic, No Pain No Gain, Never Give Up society. We live in a society that FLAUNTS struggle as a status symbol.
Just by not visibly engaging in sweaty, struggling effort, we risk being labeled wimps, or losers.

Unfortunately this is a very troubling thing for Fibro and CFS patients, because a lot of getting better is learning to relax, let go of expectations, and get enough rest. Whereas overworking is a major trigger of a relapse that makes us even sicker.
But we feel guilty about resting, so we push ourselves to exhaustion and then relapse. But at least then we are giving 110% -- literally more than we can, and borrowing energy we don't have.

There is a real shortage of role models for resting and relaxing.
There is a shortage of slogans that make resting and relaxing a good idea.
Actually, I think Dave Barry, that comic genius said it best, although he was talking about baby boomers getting older. So I'll just quote from his book, page 176 of Dave Barry Turns 50.

"It would help if the people who produce our popular culture would make an effort to portray napping in a positive light. Let's take the standard scene from an action-adventure movie, wherein two ruggedly handsome action heroes discover a bomb with a detonator counting down. [...] There is no reason why it could not be rewritten as follows:

FIRST HERO: Christ, there's enough explosives here to destroy half the city!
SECOND HERO: And the timer says only ninety seconds left!
FIRST HERO: Great! We have time for a brief nap!
SECOND HERO: Good idea! By napping now, we will remain ruggedly handsome that much longer!
(Dramatic music plays as we see the two heroes inflating small portable air mattresses.)

How can I make resting seem sexy again? Here are my theories.

1) I want to invent SuperFibroWoman, the comic book SuperHeroine. She dresses like Wonder Woman, except she's chubbier and she doesnt' have time to get her hair done, so she just wears a ponytail and no makeup. She's slower than a slow pitch softball, she's stronger than a toddler.... she's SuperFibro, and she always saves the day.... eventually.

2) I want some new slogans, yelled by a Drill Sargeant, or maybe chanted by a cheerleader.
Such as "Get out there and give it 75%!!" or "R-E-S-T, find out what it means to me!" or "Snooze like you mean it!"

3) I'd like to see some big screen movies in which the hero or heroine has Chronic Fatigue. Maybe a private eye who solves crimes in his sleep? Played by Leonardo DiCaprio, of course.

Meanwhile, I am going to make an effort to encourage people to take it easy. Next time, when someone says, "sorry the house is a mess" I'm going to respond, "Wow, I admire you for letting go of perfectionism" and when they say, "I'm tired," I'll say, "Go rest then, I'll still be here when you are done." Maybe, people will think I'm a weirdo or possibly a pervert. But maybe, just maybe, we can start a social movement that makes napping cool again.

Queen of Denial or Royal Pain?

2008-11-17T10:24:00.005-07:00

My friend Rebecca, who blogs at Chronic Town, said to me a while ago,
"Denial gets a bad rap.... what's so bad about denial as a coping mechanism? If I wasn't in denial about how desperate my situation is, I think I'd give up and die."

Facing the full reality of my illness is my personal spiritual project.
It's the Zen meditation of looking at something dispassionately without reacting.
Or, for my spiritual orientation: "The Truth Shall Set You Free."

Also, I see the unhealthy impact of denial on many people with Fibro. Denial about the seriousness of the illness leads the patient to avoid filing disability claims. Denial about the impact of the illness leads the patient to overexert and then suffer a relapse the next day. Denial about the lack of a cure leads the patient to waste precious money on scam treatments. I feel bad for all the stress caused by fighting reality.

It is my lifelong belief that if you want to improve anything, you have to first look at the situation directly, accurately, in full, and understand what you are dealing with.

So, I determined to take full stock of my Fibro symptoms and the effect on my life.

What the Hell was I thinking???!!!!

Just as Rebecca said, it's a certain amount of denial that gets us through the day.
The full impact of how devastating this illness is, is just too much to bear all at once.

One of the first things that my doctor told me to do, is to make a list of all of my symptoms, how often I get them, and a history of past illnesses and injuries.

30 minutes into this list, I read over it, and I just about curled up in the fetal position sucking my thumb.

That's my life? OMG, why go on!

I put the list aside, incomplete, and didn't look at it again for 2 years.

So much for me being the Queen of Facing Reality.

I guess I've revised my belief about facing reality.

Once again, the answer is to be gentle with oneself. Fibro patients like me need to re-learn a lot of push-hard, tough, no-pain-no-gain behaviors. Fibro patients need to rest before they get really sick. Fibro people need to exercise a little, not so much that they go for the burn and are in pain the next day. And, I'm adding to that: Fibro patients need to deal with their illness, only as much as they can handle.

It might be good to make a list of symptoms to take to the doctor.
On the other hand, it also might be good to spend the afternoon reading a guilty pleasure beach book, or watching a goofy escapist movie.

Facing Reality should only be undertaken with the proper protective gear: a pair of rose-colored glasses so your Reality doesn't burn out your retinas.

Signed,
Chronically Fabulous, Queen of Denial

Suddenly, Everyone Wants My Body

2008-10-30T13:48:00.000-06:00

So, a while back a psychologist friend quoted to me a study which basically proved that most of the time, when a woman notices a man looking at her, she feels self-conscious, whereas when a man notices a female looking at him, he concludes, "she wants my body."

Yes, ladies, when you look at some guy, thinking, "Should I tell him he has mustard stains on his face?" he probably thinks you are checking him out.

My psychologist friend (again, sorry I don't have any quotes for this information) said that's probably the reason that men often have a higher level of self-confidence than women do.

Certainly, I could see how thinking "everyone is judging me" is bad for self-confidence, whereas thinking "everyone wants my body" could be good for self-confidence.

This concept came back to me recently when I broke my foot, and was on crutches. Suddenly everywhere I went, people were staring at me, and it made me very self-conscious. I started to feel judged and defensive. So I thought back to the psychologist, and decided instead to interpret each stare as, "he/she/they want my body". (To be truly egalitarian, I didn't limit it to just the opposite sex)

Yes indeed, this IS a morale booster! Since all the interaction happens inside your head, it's way more fun to choose "they want my body" over "they are staring because I'm disabled."

Sometimes the results are flattering (hot young guy staring at the cast on my foot - oh yeah, he wants me). Sometimes the results are disturbing (6 year old boy staring at me open-mouthed). Sometimes the results are just hilariously inappropriate (a trio of suburban moms pushing baby carriages all look at me as I struggle with a set of stairs).

I've decided to adopt this new, self-confident worldview whenever I start to feel self-conscious about my visible limitations. And I'd encourage anyone who has a visible disability to try this perspective out for a week and see how it feel.

Those stares at your wheelchair.....oh yeah, they want a sweet ride like that!
The long looks at your cane and braces...... Pure Lust!
Feeling self-conscious at the gym because you're not one of the low-body-fat elite? ..... Tell yourself they all want your body, and get on that treadmill and flaunt it!
And the way that people pointedly turn away or refuse to make eye contact due to your impairments? ..... it's jealousy! They can't face your sexiness!

Try it out, and see if it changes your mood.

Is there anything GOOD about Chronic Illness?

2007-12-09T11:10:00.000-07:00

Spoiler: Yes, I did finally find something good, cool, and fun that has happened to me due to having Fibro.

I have been asked, "Is there anything good that came out of you having Fibromyalgia?"

(Usually, I hate this question, because most people use it as a 'trap'. If you find anything good, then they will follow up with 1) "See! You get good things from being sick so you don't want to get well!" or 2) "You needed to get FMS to make you a better person," - both of which are BS jerky answers.)

Usually my answer is Hell No! Anything positive that came about 'because' of the illness could have happened without getting sick.

I don't believe in the paradigm that people need pain or punishment in order to beat them into spiritual lessons.

Some people say that their chronic illness "made" them become more understanding of others, more patient with themselves, more spirtual. My reply is that the illness didn't "make" them, but that faced with the illness they made a choice to be a better person. Faced with a chronic illness, a person go either way. They can become more understanding of others, or they can become more narcissistic and think that their illness is the only pain that matters. The choice is the person's, and if they made a good choice, they should get the credit for their behavior, rather than crediting the illness, which is neutral.

But I have finally found something that is really wonderful, which happened only because I have Fibro.

I have met amazing, cool, creative, fun people ONLY because I met them in a Fibro support group or we reached out to each other because we both have a chronic illness. I have close friends that I cherish, whom I would never have met unless we were on the same bulletin board or attending the same group. I keep meeting more people who write to me because of my blog or on Myspace, because of chronic illness, and I look forward to meeting more, because THEY ROCK!

Yeah we initially connected because of Fibromyalgia, but I discover the fellow patient's wonderfully quirky sense of humor, their creative and artistic side, their compassion, their style, their wisdom, and I'm really glad I met this person.

I believe that if there were a miracle cure for Fibro tomorrow, we would all stay great friends. But we never would have met without Fibro.

Thank you all for being your amazing selves!

Oh yeah, and Fibro still sucks.

Emotional Kung Fu: the quick jab

2007-07-30T14:49:00.002-06:00

Random New Age Jerk: "You have an illness because you are harboring negative thoughts, because you have anger or resentment. The mind is more powerful than any medication. Your body and immune system are perfectly capable of fighting off illness if you think positive thoughts. But if you can't overcome an illness it's because you are hanging on to the illness with negative thoughts."

Me: "Please go find some broken-hearted parents who suddenly lost their infant to S.I.D.S. and tell them that their precious baby was filled with negativity, anger and resentment, and that's why their little angel succumbed to S.I.D.S. when other parents get to experience the joys of holding their babies and watching them grow up. It will sure be a comfort to them to realize that it was their little baby's own negativity that resulted in her death."

If you don't have to deal with New Age Jackasses who try this routine, consider yourself lucky. (I've heard other patients complain about having to deal with Christian Jackasses who have a variant of this same attack, "If you really believed in Jesus, this wouldn't happen to you." It just shows that if someone wants to be a jerk, they will find some way to manipulate any set of universal beliefs to support their behavior.)

Here a person who is healthy, rather than counting their blessings and reaching out to the afflicted, instead congratulates themselves, and immediately judges that they are a better, more spiritual person and you are not, because they are healthy and you are not.

(Personally, I find this accusation of negativity REALLY irksome because I make a concerted effort every day to be pleasant and encouraging to the people I encounter, and not let the pain make me irritable towards others. It doesn't make the pain any less for me, but I figure just cuz I feel miserable is no reason anyone else should.)

This type of attack does nothing to help an ill person relieve the stress in their lives that could be making symptoms worse, nor does it help an ill person to practice positive thinking to overcome depression. Rather it creates separation, a New Age more-spiritual-than-thou pride, and snap judgments.

It's amazing what the "people who think positive don't get sick - people who are harboring negative thoughts succumb to disease" criteria tells you about the world.

People in Africa and Latin America are dying of A.I.D.S. at a devastating rate, and of a number of infections and diseases that are rare or unknown in the industrial Western world. So, apparently according to the New Age Jackass, those dark-skinned people are just really negative compared to us whiteys(?!?!) Who else is "negative"? I guess little kids with leukemia are "negative", because the illness got to them. Ted Bundy the serial killer was a healthy, athletic young man (until his untimely execution), so I guess he didn't have any anger, hostility or resentment as he butchered his victims. I'm sure you can add to this list yourself.....

If you have been one of these New Age Jackasses at times yourself, just know that telling someone to "be positive" and blaming them for the illness, does nothing to make them feel more positive. If you want someone to be more cheerful, then tell them a joke that makes them laugh, do something generous to put a smile on their face, or ... maybe.... even listen to their complaints without interrupting (shocker!) because everyone runs out of things to complain about eventually and even the very miserable eventually will get bored with complaining and want to talk about something cheerful.

Meanwhile, here's the Emotional Kung Fu move of the day...

The "quick jab" is a boxing move that is very useful to get someone to back away a little when they are attacking you. Perfect for this type of attack.

"Yeah, I do have anger and resentment built up, but the only anger and resentment I have is that I have to continually deal with jackasses like you!"

Side Effect: Weight Gain

2007-07-30T12:39:00.001-06:00

The doctor smiles at me comfortingly.
"It's a very safe drug. The only side effect you might experience is weight gain."

Weight gain?! Now the doctor's smile just looks to me like a mocking idiotic grin.

"Wait, what about other options? Don't you have any drugs that carry a risk of brain aneurysm instead of weight gain? I'd take that! What about birth defects? Cancer? Come on, work with me here." Doc just chuckles at me. No such luck.

Damn FDA! Hey to a woman, weight gain IS a serious side effect. Every few months I get a new drug and along with it, another 15lbs to carry around.

When people say, "You don't look sick" - to me, I do look sick, because all that weight happened from various effects of the illness. And then combine that with being too sick to get out of bed many days - that really does a number on your metabolism. It's the law of nature - go into hibernation, come out with a body shaped like a grizzly bear.

For all of us who have been through this cycle with an invisible illness, we now have a new level of stigma. With fatigue, to the unkind world we look "LAZY." Now due to the drug effects, we look "FAT." Fat and lazy - just about the worst possible things to be in image-conscious, modern, workaholic American society.

Isn't it absurd that at a time when I am in pain, I can't work, my life is passing away before my eyes, that what I am really concerned about is weight gain? It just shows how crazy-making it is to be a female living in 21st century America.

Yeah I'd like to believe that it's just me, being a neurotic mess, but I'm actually less weight-obsessed than most women I know. I keep hearing the complaints about weight gain from women with so much to be proud of.

Many years ago in college, I went out to lunch with a woman who had just returned from a year of volunteer work in war-torn Bosnia, sheltering refugees and providing rape crisis services. She described a life of constant near-death experiences, dodging bullets and threats. With grace and humility, she related how she witnessed and comforted the victims of rape and torture. I was absolutely awestruck by her. BTW she was just drop-dead gorgeous in an old-fashioned way, voluptuous figure, cascading blonde curls, long lashes, etc. I asked her how she was dealing with returning home to "normal" life.

She said, "Well, I'm so ashamed, I have gained 20 lbs and I just feel like a loser for being so fat and not having control over myself."

Geez, shows where priorities are, huh? It doesn't matter if you are a cross between MacGyver and Mother Teresa, if you are overweight you are a loser?!

Meanwhile a male friend relates this story to me: A woman he works with has returned from a mission to Saharan Africa with a horrible wasting disease. She is under medical care. Her eyeballs are all yellow and her skin is wan. But she's thrilled that "now she can wear all those designer clothes she couldn't fit into before, and she (in her own words), thinks she looks great!"

It's crazy. I tell myself it's crazy, and I still worry about it.

Meanwhile I have this fantasy....

I'm back at the doctor's. He looks at me seriously and says, "Well we have this new experimental drug for chronic pain. It's just that it carries some risk of side effects. I have to warn you about this. You will lose 20lbs and all the hair in your legs will fall out."

I sigh dramatically. "Well doc, I'll take this new drug. As for the side effects.... well I guess I'll just be brave and deal with them."

Illness and Isolation - Part One

2007-06-28T18:37:00.002-06:00

Someone recently wrote me with an interesting question: "Why is it that my friend with FMS is so isolated and alone? And a lot of it is self-imposed: when she's sick, I want to come visit her but she pushes me away. Why does she do that? It isn't healthy." This got me thinking. Before I had full-blown FMS, I would sometimes get sick as anyone does. But I never was as isolated as with FMS, and I never had that urge to push people away as I do with FMS. So what is it about FMS? Why do some of us with FMS want to be alone when we are sick, even though it makes us lonely?" There are a lot of reasons I can think of, from simple to complex, reasons that I think people with FMS will relate to, but that are really counterintuitive to other people. So here I begin with the simplest reasons.....

Part One: I don't like the way I'm judged and treated when people to see me at my worst

When I go out to meet people, I dress, I do my hair and makeup. I look professional, or I dress in eveningwear, or maybe even something very hip. I hold myself a certain way, I project an image, and people treat me a certain way based on the impressions they get from how I look.

Like it or not, people do judge you by your appearance. And they treat you differently depending on the judgments they make, conscious or not.

I don't like the way I am treated when I am looking weak, disoriented, vulnerable, and disheveled. I don't like being at best, pitied; at worst, taken advantage of. I can't tell you how many times I talked myself into going out anyway, in a weakened state, and had a bad experience with someone I met based on how I looked and carried myself.

All that holds true for being out amongst strangers - but my friends and loved ones should look beyond that, no? Well, of course it feels different to be around people who know me well, and even among friends, it feels different depending on how close I am to that particular person.

But I still don't want them to see me.

Part Two - Call it vanity or insecurity, but I want to look attractive to the man in my life

For my husband/boyfriend/lover, I always want to look attractive. I want to be gorgeous, I want to be sexy. I have a lot of anxiety over him seeing me again and again, looking sick, looking run-down, unsexy, unglamorous.

No matter how often he tells me that he loves me no matter what, I still worry about it. How many times I can let him see me being sick before the excitement and romance will disappear from our relationship?

Deep down I feel it's unfair to him to have to be in a relationship with someone who is sick all the time. I want to hide the most unattractive aspects of my illness from him.

I try to believe in our relationship and overcome this - but there is so much lore for even healthy women (true or not, it's a common story) about how a man leaves a woman because she had "let herself go" and "stopped being sexy to him."

Part Three - I don't have the strength to deal with my friends' emotional reactions

When it comes to my friends, I don't want them to see me "looking sick" because hate seeing the reaction on their faces. I have friends who have 'known' for years that I have a chronic illness. I meet them for coffee when I am well enough to go out, and they listen sympathetically while I agonize and rant about the hell that I have been going through. They know all the facts about how my life has changed, they hear me talk about it on the phone, the experience the results of my no longer being able to join them for strenuous activities and having to cancel get-togethers.

And still...... These are friends that 'know' that I am chronically ill -- and yet that first time that they see me, with their own eyes, in the midst of being really sick, it is still a major event. I can see their shock, their fear, their confusion, dismay, pain, and more. I can see it on their faces, I can hear it in their voices, and I can feel it in the tension in the air. I don't know how our friendship will be affected after they go through this. I don't know which will happen, and taking that risk is one more major stress that I don't need when I am sick.

I don't know what is the appropriate degree for me to help my friend deal with their feelings. My friend who sees me at my worst for the first time, goes through a major emotional experience. What's my role - "The Sufferer" who needs all her energy to deal with her own crisis, or "The Supportive Friend" who wants to help my friend deal with their own emotions. A part of me really resents having to hold someone else's hand and help them deal with the fact that I am sick! And that's one reason that I don't want people, even friends I know, to come over and see me when I am sick. Because watching them go through this realization is very emotionally strenous for me, and when I am already not feeling well I want to spare myself that stress. Some friends adjust quickly and smoothly and are focused on me, other friends are deeply confused and unable to adjust.

It's very hard to say this part to people. Friends who want to help, will be very offended to be told that I don't trust them to be able to handle what they see, or that MY having to deal with THEIR reaction to MY illness, really tires me out. But, I have found, that the people who get the most offended and try to persuade me that they can handle it and they know exactly what to do, are too wrapped up in themselves and their egos, and are the ones I least want around.

At this point, I do have a few friends and loved ones who have seen me ill, and who have made me feel better emotionally by accepting me equally at my best and at my worst, and adjusting themselves to my energy level on those bad days. I am very grateful to have them in my life, and yet it doesn't make me any more willing to go through that again with someone new.

I wish I were "tired"

2007-06-28T11:18:00.000-06:00

Recently, some patients with CFS and FMS have said how frustrating it is to say that one of the main symptoms is being tired all the time.... and to get the response from a healthy person, "Yeah, I'm tired all the time too." The overpowering fatigue can be a truly disabling symptom for people with this family of illnesses, yet it is one of the hardest to make others understand, because "tired" seems like something that everyone goes through sometimes. "Tired" is bad, is good, is frustrating, is a sign of a busy and demanding life.... but "tired" doesn't sound like a disability.

My response is..... I WISH I WERE 'TIRED.' Because I remember what 'tired' felt like, and one day I aspire to stop being Fibro Fatigued and be merely 'tired' like everyone else. I remember the feeling of being tired at the end of a day, and longing for rest or sleep, knowing that if I rested, I would recover from being tired. I remember being tired at the end of a long day, after doing a lot, wishing I could do more but feeling like I'm satisfied that I tired myself out doing a lot. I remember the physical feeling of being tired after a long workout, a hike, playing sports, knowing I could go to my edge and then recover stronger than ever. I remember being tired but being able to push past the tiredness and just drag myself along because I had things I "needed" to do that "couldn't wait." After years of "Fibro Fatigue", I long for the days when I was just "tired."

Tired is......
I'm tired, I can't wait to get into a warm bath and relax.

Fibro Fatigued is.....
I know I should take a bath but I don't have enough energy to walk to the bathroom, turn on the faucet, take my clothes off..... oh, man, I can't even think about it. I'll just sit here achey and sweaty and feel guilty for not being able to take a bath.

Tired is.....
I really want to go to this party, but I'm so tired. Well maybe I'll go just for a little while, and leave early. At least that way I'll see my friends and have some fun.

Fibro Fatigued is......
I can't move. I can't even remember that anything is going on outside my body. I don't remember which day it is, where the party is, anything.

Tired is.....
I'm tired, I'm going to just veg in front of the TV.

Fibro Fatigued is......
I can't handle the noise and stimulation of the TV, it feels like being on a roller coaster ride. I lie down with no TV, no music. If I can't sleep, I just stare at the wall in a stupor.

Tired is....
A yoga class or a brisk walk, some sort of workout, will help me sleep fully. I am tired but I'll force myself to get some exercise.

Fibro Fatigued is.....
I don't have awareness or control over my muscles. If I try to work out, I make jerky movements, slip and fall, get injured.

Tired is.....
I feel like resting. I think I could sleep if I lay down for a nap.

Fibro Fatigued is......
I don't want to rest, there is something I really am enjoying, and then I involuntarily fall into a deep sleep, regardless of what is going on around me.

Tired is.....
I'm looking forward to going to bed, because I will sleep and wake up refreshed.

Fibro Fatigued is.....
I'm already frustrated, because I sleep and I don't feel any better, I don't know how long this will last or when I will be able to function again.

Tired is.....
I'm just relaxing with my thoughts.

Fibro Fatigued is.....
I can't keep a thought in my head. I can't focus on anything and time goes by like I'm in a coma.

On a "good" day, when I am at my peak functioning.... I am Tired.

Phantom Limbs and Phantom Lives

2007-06-26T21:08:00.001-06:00

A "phantom limb" is a phenomenon in which, after a person has a limb amputated, they still feel it there. The amputee might feel pain, tingling, soreness as if the arm or leg is still there. It has often been described that they feel this pain in the place -- the air, the empty space, the non-existence -- where the limb used to be. The phantom limb continues to live on in the neural impulses of their brain, and it lives not only in the past but in the present -- when an amputee may develop a disease or injury in the limb, for example walking by and "banging" their limb against a wall accidentally.

When I "started to get seriously ill" (or rather, when the symptoms of the illness became so strong that I could no longer brush it off or deny that my health was deteriorating) I was on a determined path through life. I was working hard and the future was bright.

It was more than that, my success felt predestined, inevitable, and unquestionable. I knew what I wanted out of life and I was all set up to get it. I had worked hard and earned my forthcoming success.

It was as sense of entitlement, even, a contract with the universe. I had paid my dues, set my sights, I was going to have a marvelous life.

The specifics aren't important here, but my entitlement included a high-powered, prestigious and lucrative career; an athletic, shapely look that I "worked out" to get; a chic lifestyle in a big coastal city. In this life I was always "on", fashionable and busy and powering my way through life.

As I went through the death-wrestle with the illness, it became increasingly obvious that my life had changed forever, and whatever my life would become, it was suddenly headed in a completely different direction.

The illness claimed my future, it claimed the life that I KNEW I was supposed to be leading.

For the longest time, I kept clinging to this dream, increasingly with a sense of desperate anger. Damn it, right now I am SUPPOSED to be working at high-priced consulting firm. I DESERVE that life. It's MINE.

But that life, that future, was chopped off, with as much finality as the blade of a thresher taking a hand. Once the crisis has been averted and the blood flow staunched, you look at that stump and know that life will be forever different.

I should be at the acceptance stage by now. It's been 14 years since I first saw the blades coming for me, since I knew I was going to get amputated.

I still wake up suddenly from a heavy sleep, a little confused about where I am sometimes. What am I doing in this little apartment in Denver? Aren't I supposed to be living in Manhattan right now? What are they doing at work without me, at the job I am supposed to be at? Where is all the money that is supposed to be in my bank account?

Sometimes when I am waiting in line at some charity clinic, a person looks at me, my manner, my affect, my resume, and they say, "You aren't supposed to be here." And I say, "I know." I'm supposed to have this life that was cut off, that I'm still attached to in my brain, although anyone can see it's long gone.

At strange moments, I still feel my phantom life. I wonder what is going on with it, as I can't see it. Is there a parallel universe in which Healthy CF is very busy right now? And what is she doing? Does she have a relationship? Is she on a trip to Europe right now? Did she buy a building to convert into her private headquarters? What is she wearing? Where is she going out this Friday night?

Maybe this is as far as acceptance goes for me personally -- a dull ache instead of a sharp pain in the phantom life is all I can ask for.

"War on prescription drugs" victimizes sufferers with severe pain

2007-06-26T21:06:00.000-06:00

Everyone who is interested in health care, politics, government, and chronic illness, should read this article:

Reason article on chronic pain and suicide

I am not taking a political position on the drug laws in general, but what most people don't know is that right now in the US government regulations prevent and punish doctors from prescribing pain medicine to patients who are really, honestly, suffering from debilitating pain.

The article might seem extreme but I can attest from personal experience as well as the experience of talking to other chronic pain sufferers, that this is really a major issue.

Honest doctors will flat out tell you, that they would like to prescribe pain medicine but they know that their office will be visited by government officials and their reputations will be tarnished, for medically necessary pain treatment.

Patients who need pain medicine are resorting to wheedling, trickery, trying to beat the system, etc. -- in other words, beginning to act like drug addicts.

Patients are being treated for depression, anxiety, any other disorder, that stems from being in pain that is entirely treatable, right now, with available medications.

I find it really damning that driving people to suicide is apparently preferable to treating pain.

No, I'm not a drug addict -- On being "OUT" about chronic illness

2007-06-26T21:03:00.000-06:00

I've gotten a lot of negative reactions -- fear and confusion mostly -- from certain people about "coming out" -- by which I mean publicly talking about my chronic illness.

The thinking goes: If you tell people you are ill, they will treat you differently. You will be locked out of certain jobs, activities, etc. because people will know that you have these limitations. You are giving up privacy, people will judge you.

Unfortunately, it's too late for those concerns. My symptoms are so severe that it's obvious to anyone who spends any time with me, that something isn't right.

I haven't been able to work a steady job in years. I miss appointments. I sometimes have flare-up so severe that I am desperate and begging for painkillers. I cancel activities at the last minute because I have to stay in bed. I am clear and intelligent one minute, then spacey and forgetful. Sometimes I sleep all day, not even waking to answer the phone.

Do you know what that looks like, to someone who doesn't know that I have FMS? It looks like a drug addict.

I decided to tell everyone that I have FMS, and explain the details of my struggle, because that's better than the alternative: being thought to be an addict who screwed up her promising future.

I had a really humiliating moment a few months ago that made this really obvious. I had to go to the hospital for an IV. Murphy's Law: I have really difficult-to-find veins. The first tech stuck me in one arm -- ouch -- missed -- then the other arm. Missed again! She called out her supervisor, who jabbed me again in the first arm -- missed! Second time in the second arm -- dug it around a little trying to get the needle to feel around in my arm for a vein -- nothing. I started to feel like a voodoo doll, getting jabbed by needles repeatedly. Then, finally, the Keystone Medics inserted a huge needle and IV into a vein on the back of my hand.

An hour later, I was out of the hospital and wandering home. Suddenly, the events caught up with me, and I needed to use the bathroom. I ran to the nearest coffeeshop and asked for the keys to the restroom.

The lady behind the counter was in the act of handing me the keys, when she stopped. Took a look at my arms, bandaged and bruised at the veins. Even the back of my hand was irritated.

Her grip on the keys tightened suddenly and she stopped.

Great, she thinks I'm a heroin addict. And I have to go really bad. Wetting my pants -- that would prove I'm an out of control drug addict, wouldn't it?!

"I was at the hospital," I say, smiling, trying to look trustworthy.

Wait! No, that didn't help. Now she thinks I have some communicable disease that I will spread all over her coffeeshop! How long will it take to explain FMS? Will she believe me?

Sorry lady, here comes the lie. "I gave blood," I say. "The techs did not do a very good job."

She hands me the keys, says nothing.

On the way out of the coffeeshop, I stop and buy a very expensive mocha drink, that I will probably throw away on the way home. To reward the counterlady for letting me use the bathroom. Or maybe to prove to her that I'm not a homeless heroin addict.

So, given my choices -- people can think I'm a drug addict, or lazy -- I'd rather take my chances with them knowing that I have FMS.

Dear World -- I'm sorry, but I'm dealing with a major illness and I just can't live a "normal" life like most people. I can't make plans far in advance or keep up with everyone else's energy level. I don't want to disappoint you or let you down when you find out that I can't keep up. If you can understand some of my limitations, I'll do my best within my powers. Thanks for understanding. -- Miss C. Fabulous

The "Real" Purpose of Medical Testing

2007-06-21T13:58:00.000-06:00

3 days ago I underwent a sleep study and a daytime sleepiness study, as one more medical test to better figure out what medications and treatments I should pursue.

Here is how this test goes:

I report to the Sleep Center, where electrodes and wires are placed all over my head, face and body, attached to a portable unit that I must carry with me at all times. It takes about 35 minutes for the attendant to attach all of the electrodes with a heavy glue.

I sit and read, watch TV from a chair. Then at 10:30, I am ordered to lie down in bed, lights out. The camera zooms in on me, and a voice over an intercom tells me which way to move. Very sci-fi. Then, "go to sleep."

Sleep isn't easy because the air conditioner is broken and I keep waking up in a sweat. Mercifully the attendants bring in a fan. Somehow I do get to sleep. Then I'm woken up again for some procedure. Back to sleep. And just when it's restful, then at 5:45, I am awoken, bright lights on, and must immediately get out of bed.

I'm tired. But now I have to somehow stay awake. I have brought books to read, there's a TV. All I can think about is sleep.... The camera follows me to make sure that I am awake. As soon as I start to slouch and lie down, or my eyes start to close, desperate for a little rest, then someone runs into the room and makes me get up and stay awake. Then, after a few excruciating hours, where all I can think about is rest, there is a "nap test." I get to go to bed, lights off, lie down..... ahhhhhhh. It feels so good, I'm asleep in minutes. And just as rest has come over me, the bright lights snap on, people come in the room, and I'm ordered out of bed immediately and have to stay awake again.

All day long this cycle repeats -- forced to stay awake, then allowed to sleep just long enough to feel it's sweetness come over me, then dragged out of bed again and forced to stay awake. All I can think of is the next nap time and how many moments of sleep I can steal before they come for me.

Sure, the accommodations are very comfortable and quiet, and the food is good, but I can't help feeling like I'm in a prison torture chamber. Sleep deprivation and disruption of circadian rhythms is a time-honored torture method for breaking down prisoners. Every time the cheerful orderlies burst in to get me out of bed, every time I hear the camera zoom in on me to see if I'm asleep, I am filled with an irrational, involuntary, desperate desire to bargain with them, to confess. What do they want from me? They can have it! I'm ready to talk! If I tell them what they want to know, will it do any good? Will they actually let me sleep?!

Which brings me to look back on all the torturous medical tests I have undergone in the past 3 years. Each level of testing seems more excruciating and humiliating. And I think this is the real purpose of the design of these medical tests -- to test just how desperate the patient.

Because anyone who wasn't at the end of their rope, and willing to do anything to get well, would not put up with this, but just say, "Forget it, this isn't worth it," and refuse to comply. I know if anyone had suggested most of these tests 7 years ago, I probably would have just said, "Nah, I'll live with this illness."

I imagine all the doctors gathered in a room behind some one way glass.
"She's back. Damn, we can't do anything to cure this patient, and we can't get rid of her. Are you sure she's that sick? Can we scare her away? Oh yeah, I've got a really good 'test', let's see if she is willing to go through with it. ..... Wow, she did that test. She must really really want medical care. Hmmm, OK, well, then I have another test lined up, let's see if she still thinks it's worth bothering us for our time after THIS one! ...... Damn, she put up with that. Amazing. How are we going to get rid of her now? Oooh, I thought up something really evil....." and so forth.

It began with the usual needle sticks for blood draws. I never had a needle phobia, I was one of those people who always was intrigued with the human body and watched the blood draws up close. But years of repeated needle sticks and IVs, not to mention the 3 or 4 sticks it usually takes, and those attendants who don't want to waste a stick, so if they miss the vein, they will dig the needle around in my arm, trying to catch a vein with the sharp edge...... I'm officially needle phobic. My blood pressure (never a problem before) rises automatically in the chair.

Then there were the urine tests. Nobody wants to hold a cup in the urine stream and collect their urine (well, if anybody does enjoy this, I don't want to know about it.) And then wandering around the office or hospital trying to find the person who wants one's urine? I have spent so much time carrying around little cups of yellow liquid, that I can no longer drink lemonade or mountain dew without a gag reaction (well, maybe that is a normal reaction to mountain dew?)

Apparently I did the urine tests a little too smoothly, because the next doctor had to up the ante with a 24-hour urine test. In this test, I am issued a big plastic jug, and for 24 hours every time I need to pee, I have to pee into the jug. In between peeing, the jug must be kept in a refridgerator. It's a workday, so this means that I have to carry a jug of urine around the office, and keep it in the lunchroom fridge. If you want to know what carrying a jug of urine does for your poise and social standing.... well you can imagine. The only good thing I can say about that experience is that nobody stole my lunch that day.

I thought the 24-hour urine test would prove my dedication to following doctor's orders, but after a few years I think it was time for the medical establishment to set the hurdles higher again. Since then, there have been breathing tests that locked me in a glass box while I asphyxiated, tests that dug around in various parts of my anatomy that I consider private, and at last the sleep test.

I've tried to think of this as performance art, I've tried to imagine what it is like to have a medical sexual fetish, but ultimately, I can't find a way to put a positive spin on this. The best I can say, is that with a certain bravado, I'm going to vault any hurdle the freaky medical testing people put between me and treatment.

I just shudder to think what could be coming after the sleep test.

The Healing Power of Sarcasm

2007-06-14T11:06:00.000-06:00

Random Jerk:
"You create all this drama saying you're sick, but I know you're not sick. I see you around, shopping, going to parties, hanging out with friends, you're having fun, you're laughing, you don't look sick at all. All that stuff about being sick is all in your head. I can see that there is nothing wrong with you."

Me:
"Wow, you can tell if a person has a serious illness just by looking at them???
That is amazing!
To think that hospitals and labs and research scientists spend millions of dollars developing and administering tests on a microscopic level, and meanwhile all you have to do is look at someone from across a room at a coffeehouse and you can tell if they have a systemic disorder or not!

Think how much money this will save the city government!
We need march across to Denver General Hospital right now and tell them to dismantle their laboratory, their nuclear medicine division, send all their diagnosticians with MD's and PHD's home, because all they need to do is to station YOU at the door and just by looking at someone you can diagnose that patient.
You need to IMMEDIATELY inform the government of your awesome super-power!
Just march right up to the ER door and tell them that you have an incredible super-power that is better than X-ray vision, and that all the people who have spent decades in graduate research can go home right now because you are better than them.
Go now! It's your civic duty! I'm sure they will all be delighted by this new discovery and you will be treated like a hero.

No - wait! Why waste your incredible gift on just a local government? You need to share this with all humanity.
Right now, the Centers for Disease Control has an entire division dedicated to communicable diseases -- TB for example -- that they believe can be transmitted from person without anyone being aware of the danger. Those fools! All you need to do is look at a person and you'll know if they are "sick" or not.
And what about AIDS?
All this money being spent to instruct people that they have to always practice safe sex and use a condom, because one can't tell by looking if a fit, healthy-looking partner could be harboring a deadly syndrome.
Well forget safe sex! There's no need for that anymore, you can just look at a person, and you'll know if they have AIDS or not!
This gift of yours is going to change the world. What are you hanging around here for? You need to immediately start calling the World Health Organization, call the New York Times, call the Journal of the American Medical Association! They need to know about your ability to diagnose dangerous disorders just by looking at someone! Go tell them now! Go!"

Warning: This is the roundhouse kick to the head of Emotional Kung Fu. If the person just said, "Gee, you don't look sick", out of ignorance, it's overkill to return fire with a response like this. A person who says "Gee you don't look sick" might really be well-meaning.

However, if you get the "you're just faking it" or "it's all in your head" speech from a real jerk (and only a real jerk would say "you're faking it," so it's a dead giveaway), then I recommend kicking them upside the head with this deadly sarcasm move.

It will knock them out, emotionally speaking, and they will be speechless except for some weak grumbling.

But YOU will feel a lot better. And that's all I care about.