From a post by jeywolf in without_meds:

I've been getting out more, which is good. My cycle of vertigo episodes appears to be waning, but I am still not free of this wave. If I keep improving at this rate perhaps in a week I'll stop carrying a staff or cane with me when I go out.

My primary care nurse has yet to produce the referral to the neurologist I wanted. I have given up on her being of much use and have located on my own a doctor of oral pathology who is an expert on Behçet's Disease as well as a sufferer himself. He should be able to rule in or rule out Behçet's as an explanation for my symptoms. Unfortunately, I'll have to pay for the appointment out of pocket, which will definitely be a strain on the coming month's already tight budget.

I saw my therapist yesterday. I still don't know the point of going, but I still keep going. I have an appointment next Monday. I'm quite ambivalent about it, but I'll probably go anyway. My therapist wants me to keep going, but also wants me to find my own reason to keep going. I am not motivated to search a reason to continue therapy, as I don't really believe that I would find one. Perhaps, if she thinks I should keep going then she should find a reason for me to do so. I feel the whole endeavour is a waste of resources.

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Today, zarthon is taking me to see my primary care nurse. Hopefully she'll give me the referral I want. At the very least, I'll get a flu shot.

After that, purpleglitter and I will be meeting riga_mortia at the Diesel Café. bathofblood may or may not be there.

riga_mortia wants me to go with her and possibly panda_cookie and/or bathofblood to mute_halo's grave tomorrow. I don't think I am physically up to it right now, considering the frequency and severity of the vertigo episodes I've had lately. Even if I was physically able, I think seeing Rob might be something I want to do on my own.

I haven't really talked about how I've been doing lately. The "episodes" have been on an upswing. I have spent the majority of today immobile. This has not been an uncommon day. I don't like this eating into my life. On days I can, going for my walks is an act of defiance. I want to get back to being productive and perhaps be on the road to getting a job again. I am mentally ready to go back to work, but it is not a realistic option as long as I have these cycles.

However, I am making some progress on figuring the problem out. I was previously unaware that "vertigo" has a specific medical definition. The term is much more specific and I believe better suited than "dizzy" for the spells I've been having. More specifically, I am suffering bouts of central vertigo, as it often is accompanied by blurred vision, loss of fine motor control, sensory distortions, slurred speech, and ataxia. The question still remains as to what is causing it.

I have found two candidate conditions: multiple sclerosis and Behçet's disease. Of course there is a good chance that it is neither, but they do give me a direction to go in when I try to get this issue checked out again. I'm going to make an appointment with my primary care nurse (who I think is a bit of a quack) and see if she can set me up again with a neurologist or someone who can properly look into my symptoms. I'm getting quite tired of this.

Skye is egg bound with a soft shell egg. It is pressing against her nerve, which is causing her limp leg. They are going to try some treatments on her overnight to try to get her to pass the egg on her own. If she doesn't she will have to undergo surgery. I hope she can pass it on her own, as surgery is very tramatic for small birds. Poor Skye. I love her.

Skye's lead test came back normal, meaning lead exposure is not the cause of her foot paralysis. It seems the two most likely causes now are a tumor or damage done due to possible egg binding. Either way, we'll likely find out tomorrow after her x-rays are done. She'll have to be knocked out for the x-rays, but she should be fine with that as the vet said other than her foot she is in excellent health.

I'm very worried about poor Skye. I don't think anything bad should happen to budgies ever.

Dilly is helping take care of Skye. He is such a good budgie and loves her so. I'm very impressed with him. We all love Skye. Skye is a pretty budgie bird.

Just got back from the vet. Skye has been having trouble using her left foot for the last week or so. The vet said that the foot is not in pain and is not injured. The problem, she said, is nuerological. The two likely causes are a kidney tumor pressing on the nerve or lead exposure. She took a blood test to for lead and the results will be back tomorrow. That seems the most likely cause at this point, and it is also the most treatable. Skye did very good at the vet and remained calm the whole time. I'm very impressed with her.

I am against psychiatry because psychiatrists are now giving hard-core antipsychotics to kindergarteners and Prozac to toddlers. I'm against psychiatry because much of their drugs have nasty permanent debilitating side effects such as tardive dyskinesia, and deadly side effects such as significantly increased diabetes risk and neuroleptic malignant syndrome. I'm against psychiatry because no psychiatrist can adequately explain what a "chemical imbalance" looks like or what a proper "chemical balance" would be. I am against psychiatry because there are no objective tests for mental "illnesses", all diagnoses are made subjectively based on the opinions of individual psychiatrists who regularly come to differing conclusions regarding the same patient. I am against psychiatry because if mental "illness" actually is biological in origin, neurologists should be handling it on a medical basis. I am against psychiatry because psych drugs simply mask the symptoms and don't actually help patients get better. I am against psychiatry because a friend of mine was told that her son could no longer attend school unless he took addictive amphetamines. I am against psychiatry because of the ongoing campaigns to force dangerous drugs and electroconvulsive therapy on adults that have committed no crime. I am against psychiatry because the psychiatry has become more about selling drugs than helping patients.

The world is changing, and I am an important part of that change. However, I am but one of over 6.4 billion people who are also all important parts of that change. Over 6,400,000,000 people. All different, none greater and none less than any other. Imagine a building two hundred stories high, each floor containing thirty rooms, each room containing a thousand boxes, each box containing a thousand lightbulbs. That building, though immense, would not contain as many lightbulbs as there are people on Earth. I have a part and purpose in the awakening that is the Happening, as every person does. I must be mindful of keeping in the part and purpose which was meant for me. No more. No less.

I must learn to focus my energy on what I need to and am meant to focus it on. I must learn to trust the winds with that which it is not my place to change. Trying to move that which I cannot move saps my energy and my focus far more than I would like or can afford. I become so involved and such things end up driving my thoughts. I loop about every misaction and about my failure to move that which I was never meant to move. The loops dissociate me from mindfulness of the presence of the All.

I have been given a different set of tools than most. A set suited to the purpose I am meant for. I am not neurotypical. It does not make me less than anyone else for when I stumble where they do not. Nor does it make me more than anyone else when I do not stumble where they do. It simply makes me me.

I have been doing many meditational prayers throughout the day. I need them to stay in mindfulness of my relation to the All. I am tempted in them for the wisdom and strength to move forward and keep in the Center Path. However, the Universe has provided me with all the wisdom and strength that I need to do that which I was meant to. It is hubris for me to think that I could instruct God on what I need. It is hubris for me to think that the Universe would change Itself based my egocentric requests. The All is so much greater than me that I am simply thankful for those gifts that have been given to me and in awe of what I have been allowed to glimpse a but small part of. I will do my best to keep mindful of the All and there is purpose that It has meant for me.

I saw my neurologist today. I though I was prepared this.

Half of the EEG session could not be read, and nothing was identified in the half of the EEG data that was interpretable. There will be no more tests. No one knows what the fuck is going on, and it is likely no one will ever know. Time to start living my life with the assumption that the current episode trend will continue indefinitely, because I have absolutely no reason to believe otherwise. At least this frees me from having to worry about the long term, because there probably won't be one for me. While that thought may be a bit depressing to me at this moment, I know that it is actually a good thing. It's a licence not to care what happens to me. I can cast off the ropes that bind me to this world. Let me look with this new sight and see the darkness bright.

My neurological or whatever the hell issues have been in a relatively inactive cycle the last 3 or 4 days. I say relatively, because what I consider an inactive cycle now I would have considered a very active cycle less than a year ago. Although it waxes and wanes in both intensity and frequency, the baseline has been increasing. It is like the waves of the rising tide. I await tomorrow, still in hope of finding out what drives the waters.

zarthon slept over at purpleglitter's last night so he wouldn't have to commute out to Arlington in the morning to give me a ride to my neurology appointment this morning. We arrived on time, at 8:30am. We waited about 10 or 15 minutes and were brought back to one of the exam rooms. After waiting another 15 minutes we were told that they never received the EEG results from SleepMed. They said to wait and they'd have SleepMed send over the results. We waited. Nothing. We waited. Nothing. Finally the doctor came in and said that we could leave and he'd call me with the results. When zarthon asked what would happen if I needed a prescription, he stated that if that was necessary he would then make another appointment. I told him that I wanted another appointment to be set now, and that I did not want to discuss this over the phone, I wanted to discuss it in person. So now I have an appointment for 4:00pm tomorrow, which zarthon has generously agreed to drive me to.

I did make one error today. I left my cane in the car. I didn't trust the neurologist not to chastise me for using one before he said I needed one. I wish I had brought it, because it turned out I could have used it. I had to rest against the wall a couple times going up to the office and at one point I had difficulty getting out of my seat. Both were relatively minor incidents that would have been made somewhat easier if I had my cane. Luckily I had no major episodes while movement was necessary.

I'm worried about what to do with the cane tomorrow. If I go up with the cane they may think it just for show because I didn't have it yesterday. But if I don't, I may need it again and have to deal with not having it. I don't trust these people, and I know there is a very good chance already don't believe there is anything medically wrong with me because of my psych history. It would fit with the pattern of medical care I've been receiving. We'll see what happens tomorrow, if anything actually does.

Getting a bit nervous now as the time approaches. 13 hours and 17 minutes until I might finally get the answers. At this point I have no idea what he is going to say. My mind is running through a thousand scenarios.

That's what I do, I obsessively run through what might happen so that I'll be better prepared for it. I do it for major events like this as well as everyday interactions and activities. I used to think that everyone did that, but I have since learned that is not the case. Most people actually just take things as they come, and if they run scenarios at all it is only for major event and then only one or two scenarios are run. Most do not take the process anywhere near as far as I do.

Running scenarios is especially important when I will be dealing with others in a potentially volatile situations or situations that may be socially confusing or overwhelming. I get lost easily and I do not pick up on social cues from others well and, although I have gotten somewhat better at that over the years. My run throughs help me know what to say and do before hand, and in that way compensate for my lack of social ability.

I've become so good at mentally compensating in many areas of my life, most people don't even realize they are very difficult problems for me. I often wonder what I could accomplish if I didn't have to spend so much of my mental resources on compensation for those resources on compensation. On the other had, I wonder what my life would be like if I wasn't lucky enough to have the degree of mental resources that I am gifted with, because without them compensation would be nearly impossible. I would be rendered almost completely non-functional.

Wow. That was some tangent.

Whatever the neurologist tells me tomorrow, things will be different for me after my appointment. I will have a different outlook, for better or for worse.

The envelope please.

In less than 24 hours I will find out the results of my EEG. Finally. After all this time, I will know for better or for worse. The long wait, the long fight, is coming to a close. This may very well mark the beginning of a new struggle, but at least a new struggle will mean that I've made progress. Finally, whatever it may be, my future can soon begin.

these "episodes" "dizzy spells" "seizures"
whatever the fuck they are to be called
they are being more defined now by when they aren't happening than when they are
i am not having good days
i am just barely making it
the razors, the pills, the trains
all seem more tempting
but tuesday is just 4 days away
promise and pessimism there meet
if he cannot help me
if he cannot say what is
then there will be no reason to believe this decent will not continue
but he may be able to give me a magic pill
a way out of this spiral
a salvation in a bottle

four days
live
die
hope
forget
breathe
release

I'm drifting through the days haphazardly. I don't feel like I'm making it. I tried to make it to the bank yesterday, but wasn't able to get out of the house until too late, despite having gone to bed at 10:00pm the previous night. I got to the bank just after it closed at 4:00pm. I completely lost it. I had just found out that my neurology appointment friday was no longer in the hospital computer system. I'm going to have to wait until the 24^th for an 8:30am appointment. It's going to be very difficult for me to get out at that time, because my problems often are worse in the morning, however it was the only time available until february. Soon I will attempt another trip to the bank. Hopefully I'll have better luck this time.

I've been very dizzy and fally today with a smaller degree of twitchiness. I did manage to make it to dan4th's New Year's waffle party. I particularly liked dan4th's gingerbread waffles. I enjoyed being at the party and having good talkings with the people, familiar and new, that were there. When it came time to leave, dan4th offered me a ride because I had been having "dizzy" episodes off and on while at the party. I declined because I felt guilty about taking him away from the party. I didn't want to be a burden. That was a mistake on my part. I made it halfway to the bus stop from dan4h's house when I ended up on the snow the first time. Went down again across the street from the stop. And again waiting at the stop for the bus. The third time, a passerby was worried and called the authorities. Luckily I was able to get up and on a bus before they arrived. However, I had an unusually intense episode while sitting on the bus and lost consciousness. I ended up missing my stop and getting off at Stop & Shop. Stop & Shop is a 20-30 minute walk to the house_of_clocks when I'm doing well, and I didn't have enough money to get back on the bus. I used my last 50¢ to call purpleglitter and ask her for a ride home. Unfortunately she was in Braintree with zarthon and couldn't help me, so I had to walk. It was quite cold and the walk didn't begin well. Almost a half hour after I left Stop & Shop, I had ended up on the ground four times and had traversed relatively little distance. I almost ended up crying in the snow because I didn't see how I was going to make it home. However, I did end up breaking out of the episode cycle and was soon able to walk the rest of the way home largely without problem. Even so, I felt a large wave of trappedness. I don't like feeling that I cannot leave the house without depending on the assistance of others. I don't want people to feel obligated to give me a ride home every time I visit them. I'm worried that people won't want to see me because of that. I feel like I was already a burden and now I'm becoming a greater and greater one. I know that things may not remain this way, that when I see my neurologist again I might get meds that might help me. But with so much fighting, I don't have faith in the medical establishment anymore. I don't have faith things will get better. Maybe I should be more optimistic, but I can't get myself to be. I just can't.

Over the last several days, I've been going out more than I have in quite a while.

Wednesday night, zarthon took purpleglitter and I out to Uno's to celebrate purpleglitter's fabulous new job.