Get over my fears and anxieties about going to the doctor and actually go get the medical treatment that I need.

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 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.

How I wish I had good news to report from my MRI on Tuesday, but I don’t. Even though I had my MRI scheduled for the open machine, I wasn’t able to have it.

The machine was very different from what I was expecting, even with me having researched it and looked at pictures of it. It was like being put in two large dryers that were in front of one another. I had learned the measurements of the macine and measured them off and practiced being in it in off and on for three days, but not even that did any good. I told the tech about my history, and he suggested we do a couple of practice trips into the machine first. When he put me in the first time, it bothered me quite a bit, but because of how important these pictures are, I told him I was OK and he could move to the next step.

After that, he put a large cervical restraint on me that bolted my neck to the table, he put some leg straps on me that tied my legs to the table, and then he put this hard plastic mask on my face that covered my whole head, including my eyes, and bolted into the table. There were two slits for breathing, but not even the slightest eyehole, and it was about an inch from my face. It was like one of those death masks they put on mummies. That mask covering everything plus my whole head and neck and neck being bolted down to the table left me feeling trapped and suffocated. Anyway, I started to have a panic attack like last time as soon as he put all that on me, but somehow, I still agreed to go in the machine and see if I could stand it in the machine with all of that on me. I just couldnt. I couldn’teven really breathe in alll that stuff, and once he put me in the machine, it felt like I was being burried alive. He took me back out and I was having a lot of trouble breathing like last time.

He told me that the next option is to try it with full anesthesia, where they will knock me out completely and keep me out until its over. I don’t even want to think about going near an MRI machine again, but I agreed to it and they have scheduled it. It’s not until January 13. That was the soonest they could arrange everything. I really hate that it’s that far away. I need these pictures now. Plus, I keep dreaming about that machine. I want all this over with. I’m not as angry with myself or as ashamed of my fears as I was last time. This time I mostly feel profoundly disappointed. I really believed that I would be able to do it this time, even if it meant gritting my teeth or dealing with the panic and anxiety, but I was wrong. I tried my best and still didn’t make it.

I finally have some appointments to get me to my final answers. Both of my MRIs are scheduled for the morning of November 4. It took some adventures as usual getting there. They told me at my last doctor appointment that it could take 2 weeks to get them scheduled becuase of insurance stuff, so I waited my two weeks. After that, when I still didin’t have an appointment, I went to the clinic to see why. Later that day, they called me on my cell phone, and while I know two things are true, I do not know what order they came in. I know that Brittany will no longer mess things up for me because she doesn’t work there anymore and that she lost all of my paperwork. I don’t know if she lost my paperwork and got fired or if she got fired for not telling me about my MRI appointment (and everything else) and since my paperwork would have been on her desk decided to shred it. It doesn’t realy matter, I guess. Anyway, it took two more days and a constant repeating that I wanted open MRIs, but I finally got them scheduled. So, early in the morning on Election Day, I will have both of my MRIs and finally get them over with. Then, no matter how sore I am, I am going to drive up to Columbus, so I can vote.

After we got the MRI stuff straightened out, I asked the new Brittany (I think her name is Peggy) about my follow up visit. SHe told me she had some other tests to schedule, but she would get to it as soon as she could. I should have known better. I should have insisted that she do it right then. My follow up didn’t get scheduled until this week. It was supposed to be for November 17, but now it is December 1. It seems so far away, even though comparatively to my start date it’s really close. I’m just hoping that on December 1 I finally get two things: a formal diagnosis and some pain medicine.

I wanted to tell everyone why I really haven’t been on here for almost three weeks. It’s a combination of things, but they’ve worked together to keep me from having the energy to really post on here and have led to me withdrawing a lot from pretty much evertybody in my life.

The main issue is that I’ve been having some trouble dealing with some of the news that the doctor gave me. Not the stuff connected to my neck. I’ve shoved that down for now, until I have a definite diagnosis and course of action. What has been bothering me is thew news about my EEG results. I went and looked up some things about it in medical journals at the medical library at school. I learned a whole lot about slowing and how the EEG detects it pretty precisely, but I’m not going to go into the deatils about that and skip to the more important part. The type of slowing I have is moderately severe and according to the doctor focused on the part of the brain that controls reading and writing. What that means is that while the form I have does not usually get significantly worse in the form of coma or braindeath, which seems to be the case with other forms of slowing, it is not likely to ever get any better either, and I will likely never get that part of my brain back the way it used to be.

I have been having a hard time dealing with this. I have been having a bunch feelings that change pretty rapidly from being embarrassed to being furious to being sad, but mostly I’m just plain scared. I guess I should be happy that I know that this is most likely permanent, but I’m not. Not at all. I am grateful that this is not a form that often leads to coma or braindeath, but that feeling tends to get overshadowed. I’ve tried to fight the desire this has left me with to withdraw into myself, but the harder I fight, the less successful I am.

I was starting to deal with things a little better last week, when I got a letter from my insurance company. Basically, I am about to be on my own for 100% of the bills attached to this until next September. I will use up the rest of what I have left in the still unscheduled MRIs and still owe thousands for that. Plus, I found out that I already owe the hospital over $1000 for the EEG, even though the insurance comapny approved that test. This has left me not at all knowing how to balance debt versus health.

Finally, my classes are just plain wearing me out. It’s hard for me to get to post during the day this semester and by the time I get home, I am just so tired and sore that I don’t want to type much of anything and just don’t have the energy to get on here.

I just wanted to tell all of you where I’ve been and that I miss you all dearly. I hope this entry is the begninning of me being on here more often again, but I don’t know. I do hope to be able to go back and read everyone’s back entries and catch up with everyone soon.

Yesterday was my follow up visit for the tests I had in August. This is the appointment that I was supposed to have, but got bumped, five weeks ago. What I was told is a mixed bag in all respects of the phrase, but the doctor finally has a solid direction to look in and I finally have some understanding in what is happening. That in itself is a very good thing. I am also grateful that it appears that what is qrong with me is neither, fatal nor lifelong. So, while I am not exactly turning cartwheels over the news I got yesterday, I am relieved and grateful for several reasons. I guess to put where I am psyschologically with all of this is that I recognize the good side of my visit yesterday, but I am still processing it and there are some definite parts of it that I am coming to terms with.

Despite the fact that I had it seven weeks ago, the results from my neuropsych test have not yet come back, so all she had to work with where the EEG and the EMG. However, both of those tests revealed some definite pieces of information that have given her a direction to look in.

First, the EEG: She told me that while my EEG did not come back suggesting that I have any type of seizure activity going on in my brain, it did show an abnormality. She told me that it showed that I am experiencing a random, intermittent, significant slowing of brainwave activity and that my brain is literally slowing way down for periods of time. This slowing is centered on the portion of my brain that focuses on reading and writing. She does not know what is causing it yet, as she needs my neuropsych results and some pictures, but the slowing is definitely happening, often for long periods of time, and explains my difficulty reading and writing. I am relieved to learn that there is a physiological reason for my lack of production since January and that I have not just been lazy or not intelligent enough to do my work, but at the same time, I am terrified at the possibility that this slowing could be permanent and I may never get my mental sharpness back. That said, it is the start of an answer and the begninning of targeting some the cause of some problems that have been haunting me for quite a while. I will, however, continue to be scared about this until I know that I am going to get my mental abilities back.

Now, for my EMG: It definitively showed damage to the roots of the nerves at my C5 and C6 vertabrae. She does not yet know what is causing the problem, as she needs some pictures, but she believes that my symptoms are coming from some sort of damage in my neck. Right now, she is leaning toward herniated or ruptured discs at both C5 and C6. Obviously, I am not exactly jumping up and down at the prospect of neck surgery, but I am relieved that she thinks it is something fixable. She told me that disc problems would explain just about all of my symptoms, though she thinks it is possible that the slowing in my brain is related to something else. In the meantime, I have been insturcted to avoid jarring my neck and have a whole host of travel and driving restrictions.

Here’s what’s next for me: I have to have two different MRIs. I have to have one on my brain and another one on my cervical area and my entire spine. However, the good news is that I will be able to have both of them in an open MRI at the clinic. It will take 10-14 days to get the MRI on my neck and spine approved, but after that, they will schedule both of them ASAP and schedule a follow up for me two weeks after the second MRI. They are going to try and schedule them for the same day, but there are no guarantees. She promised me that both of them would be open MRIs and that I won’t have to get back in the closed machine again. I told her all about what happened when I went for the MRI and even about how I have even started getting scared in crowded elevators, and she told me that response is quite common and was very sympathetic.

However, it just wouldn’t be an entry from me without another story about that idiot that does the scheduling for them fucking me over again. When the doctor came in, she said something to me about my MRI that was scheduled for today. I was confused and had no idea what she was talking about. Turns out, the woman who does the scheduling scheduled me for a new MRI on my brain 5 weeks ago and never told me. I had to cancel it because it was scheduled during my class, and I couldn’t miss today. Also, it turns out that she bumped my previous appointment without checking with the doctor. When my doctor found out about that yesterday, she was furious, as she feels time is of the essence here, now that my neck has been targeted as the cause. My appointment ended with me talking to a a nurse who was put in charge of scheduling my tests and the doctor going off and looking for the idiot, apparently prepared to pull her out of a meeting she was in.

I want to close this post by thanking all of you for your support these past five months. I’m not sure I’ll ever be able to articulate just how much it has meant to me and what a difference belonging to this wonderful community has made in my life. I am eternally grateful to each and every one of you for all of the wonderful ways you have found to support me, not to mention overwhelmed at how much love all of you have shown me. I know I have a long road left to go, but I know I will make it to the end, largely in part because I am not traveling it alone. I have a whole bunch of friends from all across the world traveling it with me, helping me up when I fall, and cheering me on each step of the way. Thank you all for all of the friendship you have shown me. I love you all, very much.

My doctor’s appointment today didn’t happen. They re-scheduled me and didn’t tell me. They had three emergency appointments and I got bumped. I guess that means that whatever I have isn’t fatal or an emergency, since they felt they could bump me. I know I could still have something chronic and/or very serious, though this suggests to me that they think whatever it is can wait a while longer. My new appointment is not until September 22, five weeks away. I really feel that is unacceptable, but I tried every bit of persuasion that I could, short of holding up other people’s medical care, which I did not want to do. I had prepared myself mentally for any sort of news today, but I guess I get to do that again in five weeks.

I told the nurse I really needed to talk to the doctor about my MRI and other options and whether or not my other test results made an MRI still necessary. She took a message for me and told me the doctor would call me back today. I thought she was feeding me a line when she told me that, and I was right. I did not get a call back. My doctor is only in on Mondays so I will call back or go in next Monday and see if I can get anywhere.

My plan in the meantime, is to make an appointment with my GP for next week, once school starts and the clinic is fully open. I am going to ask him for some pain meidcation, as I am currently taking nothing and just dealing with it. He should be able to give me something that will help. Also, when I went to the neurologist the first time, she told me that she is convinced that I have an orthopedic problem, too, as some of the pain is definitely in my joints. I had been waiting for this part of the process to be over with before starting down that road, but I am going to go ahead and get a referral and get the ball rolling on that, too. I just can’t sit around for 5 weeks hurting and wondering. I need to actually do something productive during that time so that I don’t lose too much time when the actual treatment begins.

I didn’t have my MRI today. I had two panic attacks in the machine. I had one when they put me in the first time, and they took me out right away. It felt like the walls of the machine were squeezing me and I had trouble breathing. They asked me if I wanted to try again and I agreed to. I had another panic attack as soon as I got put into place and this time I ripped my IV out and started trying to move around, even trying to sit up. They had to take me out again. I was breathing like I was drowning. They told me that I will have to resechedule and have it with sedation and arrange for someone to drive me home to have one there. Then, the nurse told me to get dressed and go and left me there still shaking and struggling to breathe. She even left my blood on me from where I pulled the IV out. When, I got in the car to go home, I had a third anxiety attack and started to have a fourth one in the shower at home.

I tried to be brave and strong. I even let them me put me in there again after the first one. I tried to be brave, but I failed at it in the end. I fought to get this test and then I couldn’t have it. I’m embarrassed all of this, not to mention disappointed in myself, though not as much as I was earlier.

I don’t know what this means for my doctor visit on Monday. Mom told me that there are other tests the doctor can order can order, like a CT Scan or maybe she can get the insurance to approve an Open MRI, even though the hospital doesn’t have one and I would have to go elsewhere. Mom said I might not even need it now depending on what the other tests showed. I hope one of those things is true because I am not getting in that machine again.

This afternoon, I had two more of the tests that my neurologist ordered. I had an EEG followed by an EMG.

The EEG was the first of the two tests. The woman who gave it to me told me that I was getting it because my neurologist wanted to check for seizure activity in my brain. I have multiple symptoms that make checking for that a reasonable decision. I wasn’t surprised when she told me that, but it was still a little nervewracking to have it verbally confirmed to me, no matter how glad I am that my doctor is being thorough. The test itself had some unpleasant moment, the light they shine really hurt my head and I could feel the electricity from the test running in my arms, but overall it was tolerable. The tech giving it to me didn’t say anything about it except that they would fax the results to my doctor before my follow up appointment. The good news about that test was that the woman who gave it to me was very cute, had a very sexy voice, and was very gentle when she was touching my head and face. She even washed most of the glue out of my hair and off my face so that it didn’t hurt my head. Because she was cute and friendly smiling at me, even though that’s part of her job, I tried to harness my inner Unc. However, I was friendly, but not flirtatious, so I guess it was just my inner Jamie. After she found out I was from Columbus, she began telling me how her boyfriend’s family was from there, anyway. However, she definitely made that test far more pleasant than it would have been. In fact, when we found out that the same woman who made such a mess of me scheduling my MRI such a clusterfuck had messed and failed to actually schedule my EMG, she called the neurologist’s office and helped me get the necessary forms so that I could still have my EMG today.

That was the only pleasant part of my EMG, although the tech who gave it to me was also very friendly and I enjoyed talking to him. Both halves of the test were very painful. I bled quite a bit during the needle part and had quite a bit of blood to clean off of myself when I got home. I’ve been home for over three hours and I can still feel both the electricity from the test and exactly where they put the needles in. I’m typing this one handed because on the hand where they stuck the needle in my palm, it still really hurts to move my fingers. So, I am still quite sore and quite tired from the test, which was at least as painful as I thought it would be, if not more so. However, the doctor talked to me for a few minutes and told me he found something. He told me that he sees a very strong possibility that I have “rooted nerve damage” in my neck. I am shocked by that, as I hadn’t even considered a neck problem to be a possibility. He was stunned to learn that I don’t have neck pain, as he told me I should be having quite a lot of it on a daily basis. Beyond being shocked and a little anxious to learn more, I haven’t really reacted to this yet. I am glad that they found something, even if it is pretty vague sounding. It’s at least a start. He told me that he doesn’t want to rule out nerve damage in my right leg either, even though it didn’t show up in the EMG. He told me my leg behaved strangely during that part of the test. He could not elaborate more on what he told me because the only information he had was the test his office gave me, but he assured me that my neurologist should be able to tell me more.

I now have three of my four scheduled tests done, with only my MRI next Friday left. I’m starting to feel that I may get some answers when I go see my doctor again on August 18.

So, here’s the bit of good news that I mentioned in my other post.

My MRI has finally been re-scheduled. I went in and told the woman at the desk what had happened and politely asked her if she would help me get the problem fixed. 15 minutes later, the woman who sets up testing appointments came out and gave me my new appointment time with a “I just got yelled at” look on her face. It was clear from watching the two women interract that the one at the desk made the other one come out and hand me my appointment. They also were not aware that she had the part about not leaving multiple messages on her voicemail until yesterday and were very upset that it had been almost a week and she had not called me back.

Anyway, my MRI is next Friday afternoon, so it is also before my follow up visit in two weeks. I have the time where I will see it 50 times a day over the next week and a half.

My next round of testing comes this Friday witth a doubleheader of tests: an EMG and an EEG.