Poetry Boy

Here’s the basics about my appointment from Monday.

My neurologist releaased me from her care and told me not to come see her for this again. She told me that she thinks it is all in my head and that I need to see a psychiatrist instead. I kept asking her about my symptoms and she kept telling me “I know you think you have __, but really you’re making it up.” I don’t know if she meant that she thinks I am completely fictionalizing them or that they are real to me but have no physical basis. I asked her about the EEG results and she told me that the machine must have made a mistake. I asked her about the EMG results and she told me that clearly it is much milder nerve damage that what she previously thought. She told me to go to PT for that and wrote me a referral for “neck pain,” when I don’t even have neck pain. Basically, she reversed what she had previously told me. She even wrote “no neurological damage” in my file. She talked to me like she thought I was crazy and a troublemaker. When I tried to talk to her about the last MRI, she wouldn’t discuss it except to say that I was uncooperative and wouldn’t let me tell her anything about it. So, that door to finding out what exactly is wrong with me has been closed. I have a PT appoitnment for next week, but I have been advised that keeping it and going to PT without a diagnosis could be dangerous. I will have to think a bit and decide what to do next.

So, yet again, I have been left to wonder what kind of bad Karma vibes I am sending out into the world. Coming on the heels of my hospital misadventure, I had yet another emergency this week. The one coming less than a week after the other was a bit much.

Monday, I went to a late afternoon movie downtown and met Christopher there. He’s the friend who took me to the hospital last week. As the movie let out at about 7:00, we went back to the garage. He got off the elevator on his floor and I continued up to mine. I got my keys out as the door opened. Out of nowhere, my right hand went dead, like it does sometimes and I dropped my keys down the elevator shaft. I panicked and ran down to where my friend was parked, but he was gone. I ran down the rest of the stairs to the police station, but it was closed for Martin Luther King day. I walked around looking for help for a while until I rememberred the gov’t building next to the garage. The security guards called the elevator company, but they refused to come out, even though it was explained I had no car keys, no apartment keys, I couldn’t get ahold of anyone to come get me, and I had neurological problems.

They still said no because it was not an emergency in their view and it was a holiday. They were rude as can be to me over the phone. For a moment, they agreed to come if I paid them $400, but then took that offer off the table. The security guards gave me until 9:30 to find a ride and suggested that if I didn’t find someone that I go stay at the homeless shelter for the night. I was terrified and have never felt so alone in my life.

Finally, Christopher called me back and told me he was coming to get me but that he had no place for me to sleep. Eventually, he got me something to eat and checked into a hotel at around 10:00. He even insisted on paying for it and it being a really nice one b/c he thought it would be more comfortable for me. As bad as the experience was, I am lucky to have him as my firend and did get a night in a nice hotel out of it. I don’t know what I would have done without him, by the time he got there, I was shaking so hard I couldn’t stop, completely in a large panic attack and my legs were close to collapsing. My right leg was in such bad shape that it is just now getting back to normal pain level today. Meanwhile three security guards sat at their desk watching basketball and trying to get me to leave.

Tuesday morning, he came and got me early so we could be there when they told me to. After a bit more hassle, they finally got them out for me. It took them less than 3 minutes from the time they stopped the elevator to the time I had them in my hands. I will be getting a $200 bill for that. I also was supposed to have to pay $50 to get my car out of the garage for parking overnight, but the lady at the gate felt sorry for me and let me go.

That’s the basics of it. I’m not sure I conveyed just how horrible it was, but that will do for now. After it was over, I thoguht about how much it upset me and why and two things came to mind. While I have long been aware of my health problems, this left me feeling like a gimp or cripple in a way that I have not before. Also, it bothers me that the elevator company was able to be as shitty as they were to me because there really isn’t anything I can do about it. They have the right to decide whether or not to send a technician and it’s not like I can get people to boycot their product or that it matters if I do. They have no reason to give a shit if I ride their elevators or not. Like with my medical stuff, they have me cornered. I may be wrong and just looking at it the wrong way, but I believe I am powerless here.

So first the good news: I didn’t have a panic attack this time. I was really nervous, downright scared even, leading up to the test, considered cancelling it several times, had all sorts of nightmares and prelimanary panic attacks for weeks, but in the end, I went and got through yesterday without a panic attack. I am proud of myself for that. I have also decided to go get some help on overcoming my claustrophobia. It’s getting decidedly worse, and it needs to be taken care of before I refuse to get into elevatorsor soemthing to that effect.

Now for the rest of the story: In every other way imaginable, yesterday was a complete clusterfuck and I still don’t have an MRI, though I did my part and did everything that was asked of me.

I think I’m going to give all of you a bit of a narrative play by play of my day. It may wander a bit and it is really long, but here goes.

My friend and I got to the clinic at 1:00, half an hour before the test as I was told to do on the phone on Monday. I get to the MRI desk in the clinic and was told, “Oh, your test is being done at the hospital.” Not only is this a long walk, inconvenient, and aggravating, but the hospital only has a closed MRI machine. In fact, it’s the one that I tried to sit up in. My face literally turned white, but my friend calmed me down and we took of walking for the hospital, getting there at 1:15. I go to sign in and not only do they have my last name wrong, but they apparantly think James is a feminine name, because they have me listed as a female. It takes me a bit of time to convince them that I am the right person and they made a mistake. I was actually asked, “How do we know that you’re not trying to sneak in an MRI for thrills?” Gaaaah!

Eventually they get me registered and trundled down to MRI. Upon going to the desk, I am chastised by the clerk at the desk, “You were supposed to be here an hour early!” I apologized and explained to which I was told, “Ignorance is no excuse for wasting everybody’s time.” I was repeteatedly taken to task for this during the appointment, even by the same tech who told me to be there 30 minutes eary. I filled out the paperwork and headed on back to meet the anesthestist. Our first conversation went as follows:

Him: “How are you today?”
Me: “I am very nervous.”
Him: “Why?”
Me: “I am very claustrophobic.”
Him: “Why? That seems like a waste of time to me.”

Oh, now that I look at that way, I’m fine. What an asshole I’ve been. I mean really, how was that supposed to help in any way whatsoever, and if he doesn’t understand about panic attacks or phobias, why is he being put in charge of a patient with both of them? This was followed by him repeatedly taking a drill sergeant approach to me and disregarding my fears. I almost turned around and left, but I didn’t. I explained to him that my claustrophobia is so severe that I sometimes have panic attacks in the shower and all about the other MRIs and the elevator drops, I told him about my nightmares and gave him the whole picture. He promised me that I would not be put into the machine until I was unconscious and that they would not stop the anesthesia until I was out. He then got everyone in charge of the MRI to promise me the same thing. I put my feet up on the bed and decided to stay.

After he got done taking most of my history, he told me that they needed to do a test putting me in and out of the machine to make sure I fit. I begged them not to make me do it and felt tricked in a way with having this sprung on me, but they told me I either let them stick me in the machine without anesthesia to see if I fit or the test was over. So, even though I was terrified, I agreed to let them do it. I don’t think I was in the machine more than 20 seconds, but it felt like an eternity. I don’t know how I didn’t panic, but I didn’t. I was terrified and felt like I was being put in a coffin again, but did not have an actual panic attack.

I went back to my bed and was next asked about my allergies. I told him I was allergic to novacaine and that when I was 8 I almost died from it. After I told him what happened, he told me that he didn’t believe I was really allergic to it and told me that part of the anesthetic required novacaine. I again almost left, but before I expressed those thoughts, he offered to do a small test on my hand to show me that I wasn’t allergic to it. I agreed to the test and it came back OK. I am really confused about all of that, especially since I still have a white mark where he injected me.

He then started my IV. After trying several places in my hand without success, he finally stuck it in my index finger right by the knuckle. Let me tell you, needles were not meant to go there. In the meantime, the medicine pump broke and we had to get a new one that he then had to learn how to use. And people wonder why I was so nervous about things going wrong. What could possibly go wrong, except everything?

Finally, I laid down on the MRI table with my IV in me. They hooked up the blood pressure monitor and the oxygen thing on my finger and put oxygen in my nose. Then, they stuck the heart monitor on me, only to discover it did not work. They finally decided that it was because of my extra hairy chest. So, they ripped the electrodes off of me and brought in a plastic razor to shave parts of my chest, doing such a crummy job that they actually cut me and it’s all infected today. Finally, the heart monitor is working. I was then told that the medicine was flowing.

I was awake for about 5 minutes and then the next thing I know I am waking up in a bed and can hear everyone talking excitedly about me and checking to see how many nurses are in the OR.

Eventually, the anesthetist came in and told me that I didn’t have the test. I didn’t know what had happened yet and when he told me I asked “How did I mess up this time?” He told me I didn’t do anything wrong and explained about what happened.

What happened was once I was in the machine, I stopped breathing and my windpipe closed completely. They took me out of the machine and got me breathing again, but decided I could not continue the test without a breathing tube and there was not sufficeint OR staff for me to have one. They told me the cause of the problem was tied to my weight, though I am confused about that too because it was not a sleep apnea thing. I tried to get more details, but I really don’t understand what happened exactly. I have a couple of friends who believe it was the novacaine, but who knows.

He then measured my windpipe for a breathing tube and it turns out mine is too small to safely use one. They can put one in, but I run the risk of needing an emergency tracheotomy during the procedure. This runs in my family, as I have several relatives who have nearly died because of complications from breathing tubes. He also told me that doing what they need to do for me to have an MRI now will turn this into at minimum a non invasive surgery that could require me to spend the night.

What he then told me next shocked me. He told me I was still conscious and talking to them when they put me in the MRI machine, telling them I wasn’t asleep yet and asking them to wait. I do not remember it, but that is not the point. He broke his promise to me. I feel lied to and I now do not trust anybody in that department to take care of me or respect me as a patient. I am really angry about that. He was shocked when I told him I didn’t remember and thought I was sentient of the whole thing. It’s just not acceptable as far as I am concerned.

Eventually, they got me unhooked and went and got my friend to help me on the long walk back to the car. My friend took me out to eat so he could make sure I ate and was OK before he took me home.

So here is where I go from here: I made an appointment for an MRI with the full surgery set up that is for March 23. However, I do not think I am going to go through with it. The risks are now getting too high, and it has become something far bigger than I am willing to do. Plus, as stated before, I really don’t trust them, for several reasons. I am going to see my neurologist on January 26 and I am going to talk to her about us going a different path with me. They told me that there are other alternatives to an MRI, and I want to look into those. I am going to fill her in on everything and I am going to ask for the results of my neuropsych test from the summer. If she gives me a good reason to go ahead with this as it is scheduled, I will. However, it is going to have to be a damn good reason. If she cannot give me a good reason, I am going to call and cancel it. I am not giving up on treatment or a diagnosis, but I really can’t go through all of this again, unless it is literally a life or death situation. I did my best yesterday, and it still didn’t happen. I think it is time for me to try a new path. I feel like a lost motorist who keeps passing the same damn tree. It’s time to try turning in a new direction and see what happens.