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health issues & leavin' on a jet plane

Posted Jun 29 2010 12:00am 1 Comment

My speech to the law enforcement officers last week went really well. I was nervous, and shaky, but managed to get through it without reading most of it (last year I just read the whole thing), and I think that was much more engaging and interesting for the audience than listening to me read my story. I had them imagine what it was like to be psychotic, with specific examples of a lot of different scenarios I lived through. Some of the things I experienced during my years of psychosis without medication were really unpleasant, and some of them are things I don't discuss here much (or maybe, ever). But I decided to be a bit more forthcoming than I was the first time I gave this speech, and mentioned some things that had happened that most people don't know about.

Unfortunately, this made me a terrified, nervous wreck after I was done divulging it. So I was more nervous afterwards than I was prior to the speech.

On the positive side, several officers (about 6 or 7) came up to me after I was finished to ask me questions, and tell me that they had learned something from what I had said. On Friday, I went to their graduation ceremony, and there were approximately 150 people there for that. The people involved in the C.I.T. training here are really dedicated to the program, and I think they do an excellent job. From what I've heard, our local program is known around the country. There is even an international C.I.T. association that has annual conferences now, and some of our local folks went to that this year and participated.

I am preparing to go to a conference in a couple of days, which is for a national women's organization that I belong to and that should be fun. However, some health issues came up again last night that would be very problematic if they occurred during this trip.

Basically, I had an episode last night of the same thing I ended up in the emergency room for several months ago. It was not the first or second time this has happened since then, either. I really felt like I might die. It sounds silly, I know, but when your heart is beating too fast, and your brain feels like it's throbbing because you have a horrible headache, and you're short of breath, and you're weak and your tongue, face, arms and legs start feeling numb and tingly, and you feel dizzy and like you are gong to pass out and you're really anxious, it can feel like you're dying. I almost called 911, because I was so afraid that I was going to have a heart attack. But I kept remembering the crappy attitude of the nurse I had the misfortune of meeting during that E.R. visit several months ago, who told me to my face (sans actual evidence), that there was nothing wrong with me, and proceeded to treat me like garbage. I also remembered the heart monitor I wore for two weeks which ended up revealing nothing much important to the cardiologist other than my heart "beats a little fast".

I knew exactly what would happen if I called 911. People would come in, look at all my medications spread out on the living room table, most of which are for mental health issues, and immediately assume I was a psych patient, nothing more. Then, they would test my respiration rate, and if that was normal, it would not matter at all whether or not I felt like I couldn't breathe, because I was probably not really short of breath. This is when someone would call it a panic attack.

The thing is, I know what a panic attack feels like. I have had them before. And that is definitely not what happened last night, or the other times that this has occurred. I don't know if it was a hypoglycemic attack. I do know my endocrinologist has told me I am "pre-diabetic", a couple of times, but never recommended doing anything about it other than losing weight. I also know that my Seroquel dosage is tremendously high, and that this episode happened about an hour after I took my medication for the night, which is also when it happened the last time it occurred.

To further complicate things, I have been diagnosed in the past with Dysautonomia, and specifically Neurally Mediated Hypotension, and my rheumatologist still tells me she's not sure if I have "Mixed Connective Tissue Disease", or just Sjogren's Syndrome without that, or actually Lupus, with the other stuff. The other stuff that's been going on for sixteen years.

When I was 19, I came down with this terrible illness that ended up being diagnosed as Fibromyalgia and Chronic Fatigue Syndrome. I knew right away that it was something more involved than Fibromyalgia, and back then, nobody had ever heard of Fibromyalgia in the first place (and CFS has never been taken seriously by most doctors). I was correct that it was something more involved. This went on to be a battle that took over my entire life for years at a time, when I was really, really, physically ill. Luckily, it was not something fatal.

The thing with chronic illness is, it's often not obvious what is wrong with a person, or even that there is anything wrong. You can look totally healthy and be terribly sick at the same time. This leads to people assuming it's "all in your head", which, of course, becomes all the more likely when there obviously is something in your head that's quite off. So, doctors will blow you off, or misdiagnose you, or assume that you're a hypochondriac. Compared to a lot of people I've come across who have the similar health problems to what I have, I really don't go to doctors all that often. I tend to avoid it, based on past experiences of medical ignorance that was not remotely helpful, and also based on my frustration with never getting a final, definite complete diagnosis.

I know I have Fibromyalgia, which doesn't really even bother me compared to the other problems, and Hypothyroidism, for which I take two medications. I have arthritis in the cervical spine, which was diagnosed over ten years ago. I have a vestibular disorder that was diagnosed sometime around 2004 by a neurologist. I have peripheral neuropathy, that was diagnosed a few years ago at the Mayo Clinic. And I have Sjogren's Syndrome, that was first picked up on by an eye doctor in 1998 or 99, which can lead to numerous other problems.

So there is that stuff. The thing is, I do not have the desire to spend all of my time going to doctors, reading medical research and demanding all sorts of tests. I do my best to take care of myself, take the medications that seem to help, and visit doctors regularly. That's enough for me.

I do not have the financial ability to see tons of doctors and get tons of tests, so that's not really an option. I went to the cardiologist, because it was recommended by the E.R. doctor, and because I was having chest pains all the time. She recommended that I stop taking the diet drug, Phentermine, which the endocrinologist had prescribed. I did that, and I thought it helped relieve the chest pains. But then this happened last night, and obviously there is something else wrong.

This stuff gets old. Being sick can be really depressing, and I have to remain focused on things that don't make me want to lie down and die, so I try not to focus too much on being sick. Then something happens, and you can't function. What to do? I don't really know. I do know that no chronic illness is helped much by trips to the emergency rooms. Been there, done that. Wasn't worth it. So, I'm crossing my fingers and hoping that I don't have another one of these episodes in the next week.

I've decided to cut back on the Seroquel, because I'm pretty sure that it is part of the problem, and I don't like taking a dosage of something that is so high, no research has been done to show it being beneficial. Also, I do not wish to take 1200 mgs of this drug which is very sedating, when I become so sedated after taking it that I feel I am about to pass out and become comatose. It's not worth the chance that I'll have this kind of episode again. I really want to find an alternative to Seroquel, but there are not many antipsychotics that I haven't already tried. Hopefully my ARNP and I can figure something out.

Sigh. This sounds like such a miserable post, and I really am not miserable at all right now. I hate complaining about my health. In general, I feel like a jerk if I complain about anything. That said, I think that this blog is the one place where I can vent about whatever is going on and there may be someone who understands, who listens, who is not harshly judgmental. I do hope that I can further develop a relationship with my new therapist, who seems like an open-minded, kind person, and perhaps get some benefits from talking to him in the future.

It's later now. I had a break from writing this post. Now that I've come back to finish it, I should note that I'm not having a health disaster tonight, and feel okay. That is a good thing. I am not going to worry about it happening again.

I am also going to buy one of those blood sugar monitors to test and see if I have low blood sugar, should such an episode occur again. I had nothing in the house with sugar in it last night, except freeze pops I had bought for my sister when she was saying here, and a banana. I ate those to see if I would feel immediately better, which would indicate a blood sugar issue. I didn't feel immediately better, but I did feel better about 40 minutes later, so I'm not sure what that means. I've read that a person who is pre-diabetic should test her blood sugar to monitor the situation, and that seems like a good idea.

So, goodbye for now. I will probably not write another post for the next week or so.

Check out Chantal Kreviazuk's version of "Leaving on a Jet Plane"; I love it!

P.S.: If you have a blog, or know of a blog that would be eligible for the Choose to Live Award, please shoot me an email at jen.evolving at
Comments (1)
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I think the worst thing you mentioned is looking fine and feeling awful. I feel so rotten most of the time that I rarely leave the house but when I do I make a major effort to look my best. When I see someone I know and they say "How are you? You look great!" I just want to say "Do I really? Because I feel like crap and I'm exhausted and have stupid voices chattering away in my head and I don't even remember your name because my memory is so shot and I don't want to talk about anything, I just want to get home as fast as I can and take a lot of stuff and try to sleep so I can have a couple of hours of not feeling anything."

I had Lyme disease which wasn't treated for 20 years and it has irreparably messed up my brain and body. And just when I was getting somewhat better my husband of 25 years died rather unexpectedly and all I can think is "Why not me?" He was a really great guy and I'm just a wreak of a human being. I'm sure my daughters would be better off. I won't say I don't feel sorry for myself because I do, someone of the dozen plus doctors I'd seen could have tested me for Lyme before it trashed my brain and body to the point of no return. And I will say I feel angry, at the doctors who said I was crazy and at the people who think I just need to "get out and get some exercise" or think I have it made because I sleep and read and watch TV all day (which I do to try and drown out the stupid voices.) I feel like shit and I hate it, I'm sick of pain and pills and confusion and depression and I'm sick and tired of feeling sick and tired.   

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