Monday, July 28, 2008

Los Angeles Times Article

Well, it's happened. I'm published for the first time in the Los Angeles Times effective this morning, Monday, July 28,2008 in their Health Section.

(Click on article to enlarge)

This piece evolved from an emotional e-mail written to some friends a year ago because of frustration in my ongoing battle with chronic disease, undiagnosed symptoms, and the erratic nature of visiting my various "A-Team" physicians who often seem to be engaged as much in a battle of egos amongst themselves as in a pursuit to "help" their patients. The specific event that triggered the e-mail from which this developed was the fainting spell that I had at Slimmons in the middle of an exercise class (I had been fainting daily for close to a week at that point, my personal limit of going down being two times a day) and being forced to go to the hospital via ambulance and paramedic.

Those who know me know that I hate paramedics. I am none to crazy about ERs either or doctors in general either.

Don't get me wrong. I know that the doctors I see are amongst the best in the world and I am lucky to be included in their practices. With most of them, you cannot call off of the street and get an appointment. You must be referred by other doctors to even be considered.

Additionally, most of them are very nice and well intended men. But having been sick for so long and having been on disability now for over 4 1/2 years, I've hit my limit. I'm tired of living in poverty and relying on charity to get by. I'm tired of filling in my day with daytime TV and hiding from those other people who are not working long term and who don't have a brain in their heads or life direction. I'm tired of getting projects and ideas started to fill in my time, only to have my health take a turn for the worse and have to give up even the little progress I make.

I'm tired of my life as it exists.

The incident that spawned this article happened 15 months ago. Unfortunately, I was limited to 500 words for the piece. I had plenty more to report; plenty more to say. In the end, even after my very-good insurance kicked in, I was put through test after test after test, seen by doctor after doctor after doctor, again and again and again, and in the end, told that my issue was "sub-clinical" and that they could not come up with a diagnosis. The fainting spells continued.

I fainted at Slimmons last fall - I can't remember the date but it was the night that Ricki Lake was featured in a piece by - I think - Inside Edition. I knew that I was going to go down before I fell the first time... managed to get myself into the dressing room before hitting the floor. I'm not sure how long I was there, but the first thing I remember was Michelle M with me trying to wake me up. I spent the class hiding in that room for fear of disrupting the filming.

After class was over, I shakily made my way to the front lobby. Sat down on one of the chairs, but was curtly told that the club was closing and I needed to leave. So I got up and started across the street towards my car. Think I remember somebody asking me if I was all right and being unable to respond. And the next thing I remember was being prone on the ground in the middle of the street with a crowd of people around me including Richard Simmons. I'm unclear what transpired from there, but I knew right then and there that I had damanged my knee badly in the fall, that I was already mortified at the attention that I was receiving, and all I wanted to do is get out of there and home. I insisted that they not call the Paramedics, and drove myself home. Saw the Orthopedic Surgeon a couple of weeks later (wanted to give myself enough time to be sure that it wasn't just a bone bruise vs. something serious), and ended up with knee surgery on the left.

Sporatic fainting has happened since then, and this spring, I had a week when I fainted every single day. A visit to my Internist, a referral to my Cardiologist, and again was told that there was nothing to be seen. Frustrating!

And then a trip to my Gynocologist, who thinks that just maybe the issue has to do with Perimenopause. Prescribed an estrogen patch for me. And I haven't fainted since.

Now don't get me wrong. I'm not convinced that this is the answer. Yet. Sometimes I have the fainting spells daily and weekly for months at a time. And sometimes I go for several months without one before the cycle begins anew. But for the time being, I have a little hope. At least this doctor, Dr. Rothbart, had nothing contradictory to say about my other doctors. Just quietly went about his business and we'll see what we see.

And as far as the article appearing today in the newspaper? Makes me think of the old movie "Joe vs. The Volcano." I'm very ill again with autoimmune issues. Tom Hanks, in the movie that was awful by the most lenient of standards, made one quip that remains with me to this day. "Bad timing, babe."

Will my doctors even see the article? If they do, will they care? Will they be angry with me? Will they take it out on me? I suppose it remains to be seen.

All I know is that the truth is the truth is the truth. If any of them questions me about it and the veracity of the statements, I can tell them, to the line, who said what and when. I can tell them that the financial cost of the adventure - which I did not want to embark on in the first place - was obscene and I got nothing out of it. Not a diagnosis. Not a glimmer of hope that the issue would resolve itself. But a lot of nasty comments and insults directed at me.

I don't know why I submitted this piece to the Times for consideration. I don't know what the upshot of it is going to be. I received my first congratulatory call about it before 8 am this morning. I suppose that there is some small possibility that it might help somebody, somewhere. I hope so. Because all I've gotten out of the whole thing is a great big headache. And no, I'm not going to look for help with that. To what end would I start that process?


Anonymous said...

I for one am proud of your published article..maybe it will give the medical community a wake up call to work on their bedside manner with us..maybe it will give the medical community a wake up call to communicate more effectively with other dr.s on consults as well as us..

I am so proud of you..and I pray you get nothing but kuddos, and congrats for it.

Vennie said...

The LA Times!!! Whoo hoo! I've heard writers are generally told to "write what you know", and boy, do you know about frustration with the medical community!

Just for the record, if any of the docs try to tell you they think you have a "brain cloud", head for the hills, and not the volcano.

LI Laura said...

I want to say congratulations on being published in the LA Times, but it doesn't quite seem like the right sentiment seeing what the reason for writing the article in the first place was. You exposed what people with chronic illnesses go through, and maybe a doctor or two will read it and think twice before speaking. Good for you!


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