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?

Picking Up the Marbles

On Tuesday, I saw my new Podiatrist for the first time. My old one, Dr. B-, seemingly could not make an appointment without changing it... from afternoon to morning, from morning to afternoon... from week to week. We finally hit a point when I could not accomodate his schedule. After we had a 3:30pm appointment for 3 weeks out, I got a call from the office in which he practiced. At 4:30pm the day before. He wanted to change it to 10:45. AM.

Unfortunately, or maybe fortunately, that conflicted with my Physical Therapy appointment. I complained to the staff. Explained to them - and they already knew it - that I had been more than accomodating to his shifting-like-the-sands-of-the-desert schedule without complaint for months now, and this time I couldn't do it. What were we to do?

Dr. B- only practices at that location on Wednesday afternoon, and when queried, they couldn't guarantee that if I made an appointment with him for the following week, he wouldn't change it again. So that was a no-go. Then they suggested that I see the other Podiatrist who was still practicing in their office (and I assume will be taking a larger role with Dr. B-'s eminent departure to another location). After a brief discussion about finances because I did not want to have to pay for another doctor because the first doctor that worked in their office left me hanging post op, we agreed that they would pick up the charges and we made the appointment. For last Tuesday.

I liked her immediately. Dr. K- did not change my appointment, and in fact was right on time. We briefly discussed my surgery and the aftermath; she was surprised at how painful it still was (I hadn't realized it until she gave it a good squeeze which made me jump and yelp) and how weak the toe was. She showed me an exercise in which I was to pick up a pencil from the floor with my toes for the next two weeks ("at least 10 times a day") and she would see me again then. When she would be prepared to make me orthotics for my exercise shoes so that the bones that were clearly shifting in my foot might be contained and we just might delay the onset of yet another Neuroma. Like I said, I liked her.

I told Rocky at Physical Therapy about her. He has been aware of my ongoing concern over Dr. B- and was happy to see that I was better suited. We've agreed that my last rehab appointment for my knee will be tomorrow. Truthfully, there might have been some merit to me continuing for another week or two, but my finances after four-plus-years on disability just won't sustain it so I'll have to make due on my own. I've made a remarkable recovery already, especially for me.
Anyway, Rocky decided to have another exercise added to my routine. It was one in which they spread marbles on the floor and I was to pick them up with my toes and drop them in a little cup. After 15 minutes, I had not yet completed the task. As I said, my toes are really weak.

Not being able to do such simple things is very frustrating, and an analogy for my whole life. I would like to be normal. Well, maybe not normal because that's pretty boring, but it would be nice to have a life where my body was not constantly failing me.

I am currently struggling with a number of medical issues. My left knee and toe are recovering nicely, but I'm sure that my right knee has a torn meniscus (damaged the week before the left knee surgery) and I had an MRI yesterday so that we can confirm it. My Crohns is flaring and, although it's not escalated the past couple of weeks, it was advancing at an alarming rate up until then. I have not got a lot of faith that the newest medication - something that I have to inject myself with weekly - is going to help, but I have no choice in the matter. I'm giving myself the shots and hoping for the best.

In the meantime, the fainting issue also returned about two weeks ago with a vengence. I don't even necessarily have to be doing anything taxing to bring it on. I can just be standing there talking to somebody and boom! I'm on the floor. But of course, I hate it the most when it happens at Slimmons and it did twice in one week in two successive visits. The second one in which I never progressed past the front desk.

I've seen my Internist for it a week ago - I think/hope he is taking the situation seriously - and also the Cardiologist. Wouldn't you know it, Dr. G- gave me an Event Monitor (again) and sent me on my way until May when I will have a stress test done in his office. And the last faint before seeing him happened two days prior. I've had some vague dizzy spells since then, but in all honestly, I've kept my butt planted in a chair and I never go down when I am sitting. I can feel kind of bad sometimes, but not to the point of a faint.

Then, yesterday, I was at my therapy appointment and discussing my frustration about the whole thing with Dr. M-. Especially that I would be responsible for pushing the button on the monitor when something starts to go wrong. One of the unfortunate things about the big episodes is that I seem to have an intellectual disconnect before I go down. I don't have a lot of time when my body is signaling distress, but I usually think "Oh my God I'm about to faint" and if I acted on it right away, I could probably avoid it by getting to a chair. But that's where things go awry. I don't seem to be able to act on the thought and if somebody asks me if I'm ok (I am often very flushed too), if I'm able to answer at all, I say "yes." Not the right answer but all I can get out. And I'm supposed to be able to push the button?

"That sounds like oxygen deprivation to your brain," Dr. M- said. And we discussed the pressure that I always feel in my neck before such episodes. Carotid Artery Disease was his immediate suggestion. A build up of Plaque in the Carotid Arteries.

I looked the ailment up on the internet this morning. There I found a lot of my symptoms. Transient ischemic attacks. Weakness, numbness, tingling, or paralysis of arm, leg, face, on one side of your body. (I had a neurological work up about this complaint almost two years ago with no identification of the issue.) Blurry eyesight. Dizziness, confusion, fainting, or coma. Sudden severe headache with no known cause.

But then there are the risk factors. Hi levels of low-density lipoprotin cholesterol and triglicerides in the blood. Nope. High Blood Pressure; Diabetes. Used to have both, but they went away years ago along with the weight. Smoking. Obesity. Lack of exercise. No three times over. The only risk factor that I currently have is a family history of coronary artery disease.

Dr. R- scheduled the test for it tomorrow. He told me point blank that he did not think that this is what is wrong with me. And I appreciate his point of view. But I am desperate at this point to have some kind of diagnosis. Anything. Even something as serious as what we will be testing for.

I intend to grill the tech about the results during and after the test. I don't expect to have them fully revealed to me, but I will phrase the question in such a way that he will be hard-pressed not to give me some kind of response. Something along the lines of "I intend to return to exercise class on Saturday as my Cardiologist said I could. Are you seeing anything on your screen that would suggest that this would be a bad idea?"

And then, since Eric & I had a long discussion about it last night, if there is no reason that the tech can give me not to attend, I will return.

I don't know what will happen when I arrive. I know that they all care about me at Slimmons, but how long are they to be expected to put up with my medical issues before they finally pull the plug on me? It's been years going there, with regular issues of health predominating my appearances. I'm always fearful of the day that they will finally tell me that they've had it with me and ask me to leave.

And if I do attend on Saturday, what will happen in class? I'm really scared of that too. If I go, I intend to participate fully. After all, my doctor said I could. And if, by participating I provoke another spell? That might not be a completely bad thing. Because I'm practicing now, telling myself to "Push the button." "Push the button." "Push the button."

Maybe if I rehearse it enough, when I have the issue again, hopefully while I"m wearing the monitor, I'd like to think I'll have the presence of mind to push the button before I go down. Get a recording of what is happening with my heart at that moment.

I'm desperately trying to pick up one of the marbles in my life.

Faceless People

I think that anyone with an income who works in a large city has seen them. Or "not" seen them on purpose. The homeless. They sit on the sidewalks in varying states of decay. Addicts of one sort or another. The mentally ill. The down-on-their-luck. I've done it too. Walked right on by, purposly averting my eyes while feeling bad, pretending they don't exist.

After all, what can I do about it? I'm barely in a home myself. Having been saddled with medical issue upon medical issue upon medical issue, and the bills that just won't quit, I live in quiet despair. Trying to pay my own way and not making it without help. Incapable of putting in a full day's work, or even a partial day enough of the time to generate a sustainable income. I'm on to something with my creative endeavours, but don't have the health and energy to make anything out of them. I'm trying...

Yesterday was "Injection Day." The medication that I have been taking for the past eight weeks is weighing heavier and heavier upon me. Almost from the beginning, I noticed changes. Unpleasant changes. Not only in my physical state, but my emotional and intellectual ones too. I reported them to my doctors, but they never take the side effects that I report seriously. Hence the great Cyclosporine indicent of 2000.

The effects of the medication are cumulative, meaning that each time I give myself an injection, the side effects get worse and worse. The problem being, of course that it's working well on the base illness. It's the rest of it that I can't handle. And again, nobody takes it seriously, no matter what I say or do. "It's that pain-in-the-ass patient again, complaining."

I'm at a point of intertia where a good part of the day, I'm not functioning anywhere near a normal capacity. I've tried to maintain a normal routine... doctor's appointments, classes, exercise class. But making myself go and interact with people is something akin to pushing a toy that operates on a flywheel. I rev myself up and take off. I go and go and go, blurting out the most inanine comments at the most inopportune times. Irritating people. Offending people. Driving them crazy. And then crashing. Barely able to interact. Barely able to move. Making them feel bad.

Most people can't stand to be anywhere near me anymore. I can't say I blame them. I can't stand to be around myself either. I dread any activity that requires personal interaction. Or physical exertion. Or worst of all, both.

I injected myself early in the morning. Getting up at around 6 am, I dragged myself to the refrigerator where the Humira is stored. Pulled a syringe and alcohol wipe. (I tried to use the pen; this medication is unbelievablly painful to inject and I wasn't able to stand not being able to control the speed at which it went in, so syringe & needle it is.) Carried it to my bedroom where the dogs were still sleeping. And, over the course of the next two minutes, slowly dispensed the medication into my right thigh. And waited.

Within the hour, the first signs were well in progress. Shortness of breath. Chest pains. A fluttering feeling something akin to an electrical charge running down my limbs. I remembered Dr V's instructions... I was probably having a slight allergic reaction. "Take a Claritin." So I did. For what good it did. Which was none.
By 10:30, I knew I had to get up and moving. I abhor laying around all day if it's possible not to, so although I was dizzy and had a headache as well as the other issues, I forced myself into the shower, got dressed and made up, and by 11:30, headed out to my Weight Maintenance class. Where they could immediately tell that I was not myself. I was starting to crash emotionally as well as physically by the time I had arrived.
This particular group is not terribly demanding on my emotions, though. They study food with Lucy on a more intellectual level, and have the good sense not to bother with the emotional aspect. so although I wasn't a full participant, I could still keep up. I just wasn't terribly enthusiastic.

Getting home took almost 90 minutes thanks to I-have-no-idea-what-caused-the-traffic-jam on the 405 freeway. And I debated whether or not I should attend exercise class. Ultimately deciding that maintaining my normal routine was important, I got changed and headed out to Slimmons.

Richard is unbelievably accessable. He arrives 30 minutes before class every Tuesday to talk to his students individually, privately, in his office. I know that these sessions have helped many of us in ways that is hard to describe. They've definately helped me. But I also know that at this point, I am persona non-gratis, so instead of waiting in the lobby for a chance to talk to him, I hid out in the dressing room until class began. And wondered if I had made the right decision in coming at all.

It didn't take long to figure it out. It had been a mistake. I knew it when I started to flush and turn red. I knew it more as my chest got tight and I had trouble breathing. And I really knew it when, all of a sudden, I got a new pain. Intense pain in both of my kidneys. I stumbled out of the classroom and into the bathroom, where I sat for quite a while until it subsided from excruciating to severe. Then I moved out of the bathroom and sat on one of the dressing room benches for a few minutes.

S- came breezing in. I know that she is tired of my ever-present medical issues. Looking at me quickly, she said "I know that you would tell me if you needed help." with disapproval in her eyes, and ran back out before I could respond. (I can't blame her for her attitude. I almost never want help. And I can't say that I would have asked for it last night either.) I muttered "I need to get out of here." to myself, and dizzily made my way to my purse and bag, purposely averting my eyes so that I didn't have to look at anyone. After all, I don't trust them to do what I need. Just help me to my car so that I can go home. No. They over-react and call the Paramedics. That's expensive and the net result of the last Paramedic visit was about $25000 in bills between the call and a bazillion follow up doctor's appointments and tests. And we still have no idea what causes the fainting spells. I just don't have the financial where-with-all to bear any more bills like that.

So I made my way out of the studio as the class continued, and out the front door before it happened. My head suddenly pounded so hard that I became momentarily disoriented. I remember bouncing against the locked left door of Slimmons and sliding to the ground. They hadn't seen that, thank goodness, and I knew I was glad I was out of there so that they couldn't call the medics. And I sat and waited for the moment to pass. But it didn't.

I tried to get up, but when I would try to bear any weight on my limbs, they felt like an electrical charge was going through them - intensely painful - and I got even more dizzy. I realized that I did need help, and tried to crawl my way back into the studio. And couldn't make it, so I lay on the sidewalk hoping that somebody would see me and assist.

The problem with these issues is that although I can't communicate coherently, I am acutely aware of what's going on around me. I remember the two people walking by on the sidewalk, strangers. I couldn't reach out or say anything and they pretended they couldn't see me. So did the joggers; one coming from my right, and the other from my left. The first one moved into the street and then back onto the sidewalk to avoid me; the other actually jumped over me. And as I lay there, I realized that this was exactly what the homeless experience. Purposeful neglect.

I wish I could say that somebody eventually came and helped me, but they didn't. I lay there, the music from class blasting out of the door, and slowly recovered. I was finally able to sit up, and then stand up - barely - as the class was fetching their weights for toning exercises. I stumbled to my car, vomited in the street, and then sat in the back seat of my car for a while before transferring to the front where I sat for maybe another ten minutes. Then, recovered enough to operate my vehicle, turned on the ignition and drove home with no issue. I did think about going to the emergency room for a couple of minutes. But to what end? I'd be there for hours and hours and then they wouldn't help me. They never do.

I also wish I could say that I got some kind of revelation from this experience. That I am more empathetic to the homeless and down-and-out now, but I know that's not true either. I still can't do anything to help them. If I look at them as I pass, then I take on some personal responsibility for their plight, and I just can't. Can't. I don't have the reserves in any way, shape, or form to do so.

And I sit here wondering if there is some higher purpose for my experience. Believing that there is would imply that I believe in a higher power, which I don't. If I did, then I would have to be mighty angry and I just don't have the strength for that. And I would also be required to believe that there is hope for my situation, which there isn't. My doctors avert their eyes as I plead for them to find something in their bag of tricks to heal me.