I walked around Arlington and Cambridge yesterday without a cane. i'm experimenting to see if I can (at least temporarily) leave them at home. I don't like having to carry one. I almost fell down at a couple points, but I didn't. While not completely inactive, my vertigo issues seem to be at a relatively inactive point. I know that I'll probably need to take a cane with me again in the future — but if I'm not going to be falling every day, I don't need to bring my cane with me every day, eh? I can take the occasional tumble, especially since I'm wearing thick fake fur coats with padding to dampen any falls that do happen.

i'm just not fit for snow shoveling anymore
but it still needs to be done
so i did it
it's cold out there
i'm pretty dizzy in here, but it is done
for now
there is more snow falling
it won't be done for long
winter in massachusetts

Yesterday evening was a bit of an adventure. purpleglitter bought a huge club chair at the Salvation Army in Saugus on Saturday. There was no way this thing was going to fit in her car. Neither of us could find anyone with an appropriate vehicle to pick it up. Running out of options to get the thing back to Arlington, yesterday she gave in and rented a U-Haul.

However, purpleglitter was very nervous driving it, and I have my vertigo spells - so it seemed a good idea if neither of us drove the thing. We called around to various people who might be able to drive it, but none of them wanted to. Eventually I drove it to Saugus and purpleglitter drove it back. dalious was about to help move the chair into the house, and move it he did. He took it most of the way himself, only requiring assistance to maneuver it through the doorways.

To top off day, purpleglitter was named best employee at her company yesterday. She rocks. Sitting in her new throne with her certificate in hand, she knows she rocks.

Heading off shortly. I'm a bit worried about the possibility of falling at the airport. I've been having less vertigo episodes the last couple weeks, but I'm still having at least one severe one daily and I won't have a staff or cane with me at the airport. Most of my time at the airport will be spent sitting and if I'm sitting an episode won't be a problem, so my chances of a good trip are pretty high. Nevertheless, I'm worried. I don't want a huge hassle at the airport. Nothing I can do about it though. Qué será, será.

I got a letter Friday from my primary care nurse. The letter was dated Tuesday, the day after I saw my endo. The letter informed me that she set me up with an appointment for an MRI (albeit non-gallium based). I guess my endo lit a fire under her ass. My endo is good.

I have an appointment with my primary care nurse tomorrow about getting an referral to a rheumatologist. The letters constitute a slight change is sea, and I am optimistic that my appointment tomorrow will go well.

My dad:

His surgery went fine and should be out in time to vote straight Republican. They are going to put the second stint in next Monday. Things are looking good and he appears very willing to give up cigarettes.

Me:

I do not have Behçet's disease (with about a 95% certainty). However, he was cautious about the" ulcerations" on my tongue and suggests that I get a biopsy after I get a teeth cleaning. He did not have a suggestion as to what they might be looking for with a biopsy. I've had the ulcerations on my tongue for as long as I can remember, the one dentist I asked said I must be biting my tongue in my sleep. I accepted that then, but now am questioning that assessment.

Of course, since the doctor I saw today is an Behçet's expert and outside my normal insurance it would make sense to attempt to find the care in-network. I'm not even sure if this is where I want to put my energy: if the weird tongue issues are not connected, I'd rather concentrate on the vertigo.

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.

While I was sitting on a bench on the shore Spy Pond last week, I found myself looking down from above at Spy Pond and the autumnal trees of Elizabeth Island. Whether this was some sort of spontaneous out of body experience or a product of dissociation combined with vertigo and a high aptitude for spacial transitioning, I do not know.

Regardless of how I got there, it brought my thoughts to the budgies. The budgies get a lot of out-of-cage time. They fly around a lot in Lake's apartment. But it's not the same. The room has a ceiling and walls. The room has limits and I wish I could give them the sky. They are birds, that freedom is their hatchright. It seems unfair to keep them contained, but there is no realistic other option. To set them free in New England, especially on the dawn of winter, would be to give them death sentences.

We do our best to give them the closest to what they deserve as possible. We try to give them what we hope is a better life than they would have in the wild: providing a constant food supply, healthcare, and freedom from predators. It might not be enough, but it is all that we have to offer.

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.

I want to lie down. But, lying brings sleeping and sleeping brings waking and waking is not good at all. My falling down/seizure/dizzy/whatever the hell they are spells are particularly intense and particularly nasty upon waking and I attempt to limit waking to once a day — even a half-minute of slumber can be enough to set things off.

I've had several people complain about my appearance, saying something must be done. I look to ratty, my clothes are often tattered. I should die my hair or at least brush it more often. Wear lipstick. Do something.

However, I like how I look. I feel comfortable in my own skin. I've stopped trying to fit into a mold or a subculture. I'm exploring my own ground. And while I may get a little down about my weight now and again, I'm finding peace there too. I don't want to go back to being the bulimic stick I was years ago. I might be "overweight", but I'm pretty healthy (well, except for the falling down/seizure/twitchy/dizzy/whatever the hell they are spells).

I don't mind that people think I look like some "crazy woman". I am a crazy woman. I embrace that. It took me a long time to be comfortable in my skin. To be comfortable being what I am. I have come to realize of late that beauty is not about who or what you are, it is about not fighting who or what you are. I'm letting myself be me, and I like it.

I am not saying that there isn't room for improvement or bettering. While I have come far, I have a long way to go still. But as I move ahead I want to add more than replace. I no longer don't want to be me, and those who want me different will have to get used to that.

I've been drifting away the last several days. The dizzy spells and twitchiness have enveloped me. I cannot move and flicker out. I fight this place, it is hard, but I am not giving up.

Sometimes I end up caught in a nasty cycle in which I have one of my "episodes", can't get up, and fall asleep. My "episodes" are more common and intense right after waking, and in these cycles I'll wake right into another episode, not be able to get up, and fall asleep again. Yesterday, I spent 3 hours on the couch in such a cycle – drifting in and out of consciousness.

I was planning a trip to Maine to see invalid_userid this weekend, but purpleglitter convinced me I should wait until the current wave subsides. However, in preparing for the trip I did find out that the bus route to Maine was quicker, cheaper, and more frequent than I had previously thought. This will make the prospect of making plans to visit less daunting in the future.

Project Schedule has not happened since Monday. I wonder if perhaps the concept is flawed. I've always had large portions of my work day where I could not be productive. I was able to compensate before, why not now? A refined and rigid schedule leaves no room for compensation. However, I am not sure if I should give up Project Schedule until I come up with a better plan to increase my productivity and ready myself for re-entry into employment.

Yesterday went well until the last half hour of the schedule. I became very twitchy and dizzy and couldn't complete my cleaning.

I've always had downtime during the day when I couldn't accomplish much. These spells are in no way new. I always made up for them because I was very good at what I did. I worked very fast and my downtime was rarely noticed. I'm very lucky in that regard, for if I were not twice as efficient at my tasks I wouldn't have been able to hold down a job even then.

For breakfast yesterday I had a veggie burger with basil mozzarella cheese and barbecue sauce; for lunch I had pizza balls with basil mozzarella, faux ham, and faux turkey topped with parmesan cheese; for dinner I had spaghetti in pizza sauce with parmesan cheese; for my healthy snack I had cashews.

Food went well, but I only got half of my half hour of exercise in with a walk up to Arlington Center and back in last evening's thunderstorm. Getting in my exercise is going to be hard right now because I've been having lots of wobbly/dizzy/fally/seizurey/whatever-the-hell-who-knows-the-doctors-apparently-don't episodes, but I will not let that be an excuse. I will continue to try to make Project Three Meals work. I refuse to let this crap control my life.

I've been having falling/dizzy spells/seizure/whatever the fuck it is issues again. I've had felt a bit more wobbly over the last week, but it's really spiked the last couple days. According to merryperseis, my eyes dilated at the beginning of the episode on the bus coming home from the North End on Friday. This does not surprise me, as one of the major symptoms of the episodes is muscle weakness and poor coordination which often makes eye focus difficult, so eye dilation would make sense. However, as this is only time eye dilation has been noted in conjunction with one of these episodes, and I would prefer it to be noted again to designate it as a symptom instead of as a coincidence.

Yesterday was much worse than Friday. My morning walk an with taiaselene was without incident. I was fine until the afternoon, which went horribly. An incident that while waxing and waning lasted for well over an hour. There was in addition another significant episode in the evening, though shorter and less severe than the afternoon one.

Of course, there is no way of really knowing where this is going and when the cycle will wane again. I am using a cane/staff again when I go out and will until this bares itself out. I will not let these episodes keep me from going for my walks and other outdoor activities. I refuse to let this control my life. Sure, that increases the chance that I might be sent to the emergency room by the unduly worried — but that just means I'll have an opportunity for a cathartic release of anger at whatever asshole doctor I get. Works for me.

Food perfect. For breakfast I had spaghetti in tomatoe sauce with spinach and parmesan cheese; for lunch I had Spanish rice with faux pork; for dinner zarthon took me out to Rudy's where I had enchiladas verdes, chili con queso, and jalapeño poppers; for my healthy snack I had a caffeinated cliff bar. I wanted to walk home from Rudy's for my exercise, but both zarthon and purpleglitter were very much against the idea because of the number of spells I've been having lately. They insisted I ride home with them, which I did. Sooner or later I'm just going to have to say fuck it and get in my exercise regardless of the spells. I have to live my life, and that means taking risks.

I have been using my staff/cane to get around again. The gorilla glue works well holding it together, but fails when the staff is subjected to lateral forces. To strengthen the break in this regard, I tightly wound twine around it. I then coated the twine with wood glue to keep it from unraveling. I'm contemplating staining the twine, because it is much lighter than the rest of the staff. I have the stain, I just haven't decided if I want to.

I've been getting comments that my staff looks like a shillelagh. I have heard "Nice shillelagh." several times the past couple days. While I never intended it to be a shillelagh, the comparison is oddly pleasing to me.

Didn't do so well again at Project Three Meals today, but i keep going. I had pizza for breakfast, For lunch I had gluten, mushrooms, and baby corn marinated in soy sauce then stir fried. For my healthy snack I had a pickle. zarthon took purpleglitter and me out to Rudy's for dinner where I had chili con queso, enchiladas verdes, and fried ice cream. I also had a cry baby italian ice from the Ice Stand by Spy Pond.

I didn't get any exercise of note in. Exercise has proved to be a difficult issue because I've been having more issues with dizziness or whatever the hell these spells are where I get twitchy and have difficulty walking. They got better for a while, but seem to be waxing again. Nothing near what they were at their peak last winter and it's not really a good excuse for not getting my exercise in, but it is a mental deterrent to doing so. I need to just fucking go out and take my walks.

I can do better. I will do better.