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.

I"m getting dental!!

Good news for me, but I'm still a bit dubious about the new Mandatory Health Insurance Bill. Everyone under 100% of the FPL (Federal Poverty Level) will get free health insurance. Everybody who makes above 300% of the FPL will be required to purchase healthcare outright

My chief concern is in the subsidies provided for those making 100% to 300% of the FPL (between $9,500 and $28,700 for individuals). Since people in that bracket are already hit hard by the high price of housing in Massachusetts and will now be required to buy the subsidies plans, the affordability of those subsidised plans is of great concern. Since the subsidies are not currently spelt out, it could be a nasty trap where one is slapped with heavy fines for not having enough money.

I would rather the subsidies have been spelt out before this point. I would also have preferred there to have been more discussion about this legislation before this point as well, as I tend to follow the news fairly closely and this is the first I've heard of the sweeping reforms just passed. Until the subsidies are spelt out, I'm going to reserve my judgement on the legislation.

A good summery of the bill can be found here

I'm extremely worried that we all may be kicked out of the house_of_clocks. Even if we do keep it, I've already given up on heating it this winter. Due to other's lack of funds, the household is currently behind on rent by a staggering amount. I anticipate some money coming in soon and maybe more coming in from two of the roommates. But, the one that owes by far the most may never pay it. I didn't know how bad the situation was until recently, because the person who owes the most is also the person in charge of handling the rent. The problem is the landlord doesn't want multiple checks every month, so we all have to hand over the money to one person who then writes a large check to him. I can't be that person, because having a large amount of money appearing in my account every month could screw up my SSDI and MassHealth. Kicking the person who owes the most out right now doesn't' seem like a viable option, because we'd still be far in debt to the landlord without them. The best hope is the continued generosity of our landlord, who hasn't kicked us out yet.

Finding a roommate right now would prove very difficult. A portion of the bathroom ceiling collapsed yesterday, the fridge is pretty ragged, we have a minor (at this point) roach infestation and we're in debt to the landlord. I doubt anyone would want to move in under those circumstances.

We need to have a house meeting, but I don't know how to arrange it within the confines of household politics. I'm pretty sure that two of the roommates are unaware of the direness of the situation and need to be informed forthwith.

purpleglitter thinks I should jump ship before we lose the place and has been trying to find other places with affordable rents that I could live. Even if I can come up with the first and last for another place, I'll feel bad about screwing over the landlord and the other roommates, but it may be the best option, because none of the friends and family I've talked about the situation to have said they would take in mazzycat. I will not give her up.

I feel guilty whining about my problems which are very minor compared all that is going on right now. I'm safe, I know I will have a place to stay, and my city is still here. But it is my journal and I needed to get it out.

My sister, ellynx, told me that she can both help me find a doctor that will take me seriously and help me pay for seeing that doctor if MassHealth and Medicare won't. Finding out why I'm having these "spells" will make my life a hell of a lot less scary. Not knowing is worse than anything it probably is, and definitely highly contributes to my current low mood directly and indirectly. I have many other pressing issues, but my "spells" keep me from addressing them efficiently. And because of that inefficiency, I get completely overwhelmed and then am not able to address the pressing matters at all. Then things deteriorate more and more, and then… well … here I am thinking about jumping in front of trains. While getting my neurological issues taken care of may not solve all of my other problems, it may at least put a damper on the current domino effect which is dominating my life. I need to come up for breath and this offer from my sister is completely out of the blue and has my head spinning. I didn't expect this tonight. In fact, after the day I've had, added to the last few weeks, I truly didn't expect to have an optimistic outlook again ever. Maybe things can work out. Maybe I wasn't able to jump for a reason.

Just got back from therapy. We discussed both reasons I have been considering therapy. I discussed the events of the last week and told her that I didn't want to be on psych meds and that it has completely solidified my previously existing distrust of the medipsych establishment and want to leave every part of it, including therapy. She said that she did believe that I needed psych meds. I explained that if I start taking psych meds, the best case scenario is that just when they get the regiment straightened out to where it is helping me, I'll have to go off them again because on January 1^st I'll be dropped from the MassHealth prescription plan and placed on the new Medicare prescription plan with its much higher co-pays and lack of flexibility. I'll be lucky to be able to keep affording my hormones, much less taking on the additional hassle and cost of psych meds. She thought that was a sound reason not to take them, and said she respects that decision. It's things like this that help me separate her in my mind from the medipsych system in general. Yes, she works in the system, but she is not a fan of it. I figured out that I do want to remain in therapy with her.

However, want might not be the biggest part of the equation. If I lose MassHealth, I may have to leave therapy whether I want to or not. Robin wants me to keep in touch with her on what happens in that regard. She was frustrated that DMH didn't work out, but blames them more than me, which makes me feel better even though I blame myself. Losing MassHealth will screw up more things than just therapy, I really hope that it doesn't happen.

I'm not really good about getting things done. I have some sort of strange blocks about forms and bills and the like.

The KeySpan called today requesting tribute with the tribute with the threat of discontinuing service. I have money in my bank account earmarked for them, I just hadn't sent it out. I ended up paying via check by phone, and the house_of_clocks will not be losing its gas service. I need to similarly placate Verizon at somepoint soon.

After talking to KeySpan, I decided to call MassHealth as I need to get my reenrollment straightened out. I knew that the forms they sent me in June were due sometime in late August, however I completely lost them. My therapist reminded me last Monday that I have a case manager with MassHealth and that it was their job to handle my reenrollment. She said I shouldn't be filling out the forms at all. Unfortunately the first thing I found out upon calling MassHealth was as a cost cutting measure they let all the case managers go. I was then informed that the forms need to be received by August 20^th, and that it will take them 3-5 days to get replacement forms to me. So I may experience a gap in my coverage. I don't know if I'm put on the waiting list if my coverage lapse, but if I do I may end up months without MassHealth. I do still have Medicare, but there are sizable co-pays on just about everything. I am just scraping by already and can't afford the co-pays, especially since I will also be having to pay the Medicare premium that MassHealth currently pays (around $60 a month). I would have to consider healthcare and emergency only thing. That would seal the deal on quitting therapy. I know I made my own bed with this one, but it sucks anyway.

I went swimming with iamacliche and recoiling last night. It was the first time I've been swimming in several years, and the first time I've been in a pool in over a decade. It was big fun, although I did realize just how out of shape I am. Swimming 50 or 60 feet tired me out. That's very out of shape. I need to start exercising on a regular basis. On cooler days, I can go for long walks. But I need to come up with an indoor routine for when the weather isn't so nice. Maybe I could go back to my dancing workouts. Unfortunately, in order to do that I'd need music, and in order to have music I need to fix Severus. I planned to reinstall the operating system on Severus a few weeks ago, but never got around to it. I need to do that soon, but today I have a more pressing concern: get my MassHealth paperwork sent in.

I have been contemplating moving to Portland, OR. Portland is a liberal city with a nice public transit system. It has milder winters and summers than New England. With all that, the rents are about half that of the Boston area. Unlike SSI, the amount I get from SSDI doesn't vary with my housing costs, which means saving $200 on rent puts $200 extra in my pocket. I've long said that an extra $200 a month would be all I really need to be reasonably happy. Right now, I feel crippled socially, because I can't really go out to coffee houses and other various gathering places with friends on any sort of regular basis. $200 a month would allow me to do that and also get some new used clothing at the thrift stores. I don't know how I can make that extra money in Boston without jeopardizing my benefits. There are various illegal options available to me, and while they are tempting, I'm far too afraid of jail and prison to explore those routes. Any move to Portland won't happen until at least next fall, and even then would be contingent on a number of factors. If the housing bubble in Boston actually bursts, the move might not even be pointful, as rents here would be driven down. I'd wager even money on that happening.

I have been posting simi-regularly again, but I haven't been posting much about what's been going on in my life. So here goes.

I still get twitchy and panicky sometimes, but not near as often as I did last year, which is not near as often as the year before that. So I'm continuing on the path of improvement. I'm still going to therapy, but I'm not sure the aim of it at this point. It's nice to talk about what's going on in my life to an quasi-objective outsider, but there seems to be no direction. A good part of the reason there is no direction is me. I'm not entirely sure where I want to take my life at this point.

I am near or at the point where I could conceivablely work a job again. A steady job would help me incredibly financially. The disability checks are just barely enough to get by on, and leave scant left over for much else. A job would also help me structure my day, my days now drift by in a random fashion with little rhyme or reason.

However, I am extremely discouraged about my chances of actually getting a job, and if I do get one, my chances of keeping it. The job market sucks right now, which is very discouraging, as is the fact that I'd be applying with marks against me. Being a out transsexual carries a lot of discrimination, which I experienced to a very high degree when I was in the job market before. I had a very difficult time finding a jobs, and when I eventually did find jobs they usually paid far less than I should have been making for the work I was doing. Far less than most non-trans folk in a similar profession and at a similar skill level would accept. I fear that the coupling of the discrimination with the fact that I've been out of work for almost 5 years will be a death sentence for my job hunt. The gap in my job history gives employers an easy and valid excuse not to hire me if they are at all uncomfortable with my gender identity.

And after I've gotten a job, it is possible that some symptoms may become problematic again. If I am unable to keep the job, I'll be in a far worse position than if I never tried. By getting a job and failing I will be left with no job and no disability or medical coverage. I could quickly end up on the street, a possibility that seems far to real to me seeing I've been there before.

As an effect of how I view the chips being stacked heavily against me in the job market, I am very dubious about even trying. And the discouragement and resentment I feel from the situation leads me to seek out other reasons the job market isn't where I want to go. Do I really want to end up working at a job whose sole purpose is to make some fat cat a little richer? To line someone random person's pockets? Do I want to go back to facing the annoying issues that generally come up in a work environment strewn with a ton of assholes. I've virtually locked most bigots and right-wing nuts out of my life, do I really want to go back to interacting with them? All in all how can I view it as worth it to fight very hard for something that is going to suck anyway? Money isn't enough of a motivation. Survival would be, but through disability my survival isn't nearly as impaired as it would be with a failed job experiment.

If I'm not going to get a job, I must figure out what I want to do with my life. I want to accomplish something, I just have to accept that it won't be in the traditional definitions of success. Being successful could be simply improving the lives of those around me, which I do to a degree, but I could be doing more. It could also mean participating in political actions, to improve the world in general. Creative work that inspires and touches others is also a valid form of success. Doing volunteer work that helps the local community would also be valid. One thing prevents me from achieving any of these successes in large quantity is something that I can work on: day structure. I need to plan out my day and add regularity to important routines. This is within my reach, I am in a position to move. I have given myself time to orient myself to my new world since I have gotten off my psych meds, and now that I am more familiar with the new landscape it is time to make my move. I need help to do this. I still have the tendency to drift, and I'll need those around me to help me focus. To occasionally ask me "what have you accomplished today"? Help me keep my eye on the prize. With the support of my friends and some difficult changes on my part, I could become a better, more successful person.

'Tis the set of sails and not the gales Which tells us the way to go.      -- Ella Wheeler Wilcox

I need to set my sails.

ducks can put half the brain into sleep mode and leave the other half alert
wouldn't that be handy
it would also be interesting to have a completely left brain experience
and then have a completely right brain experience
would the right brain be able to remember what the left brain did?
of course the duck system allows the waking side to awake the sleeping side
they use this primarily to literally keep an eye out for predators
but if i were doing someones taxes i could let my right side go to sleep
and i wonder what art could be made without interference from the left
this would be interesting to experiment
i would like to try something like this on acid
it just might be feasible.
just maybe
possible
kinda sorta a minor likelihood
worth a shot
would be a nifty skill
i could function all day long
8 hours right only
8 hours left only
8 hours both
if memory doesn't work well in transfers, i could attempt a synchronize function and bring the other half up to date
in any case i've dealt with not remembering the majority of my day before
losing time, even in this odd scheme wouldn't be disastrous
at any one point i'd have at least two thirds of my memories
and a third of the time i'll have them all
well all that i can remember
as i don't have all my memories still
but i have been doing good at keeping present nowadays
my therapist says this is a good thing
my therapist is going to ask me all sorts of questions about what happened
i don't want to answer them
mostly because i don't know what caused it
i guess it could be the celexa outage, but i don't think that's explains everything
i talk with my pdoc monday too, perhaps i'll ask her if that could explain it
she'll probably say "yes" and squawk at me for losing them and not getting them replaced
but i didn't have any money and masshealth won't cover replacements for lost pills
that's all i feel like typing at this time
so i'm going to end this post
goodbye

Yesterday in therapy we discussed me getting into a day program and/or possibly getting a part time job through Mass Rehab. Mass Rehab can find me a job that won't cause me to lose my benefits. So, if I'm able to handle it I'll have a little extra cash on hand. I've always said a couple hundred a month is all I need, and that's what I'd be getting. Eventually I'd like to go back to a full time job with benefits, but that is still a while off. I'm very pleased that at this point I can consider getting a job again. A year ago that wasn't even something I could think about. It's a mark of improvement. First step is to get on DMH, from there I'll see where I go.

I volunteered at the local arts center Wednesday night. It was a good experience. Volunteering allows me to do good while at the same time testing the waters to see if I might be able to hold a job in the near future. I don't think I can go back right away to the kind of work I was doing. I need to find a lower stress job, probably very part time to start with. My therapist says she can hook me up with Mass Rehab, where I can find a job that won't cause me to lose my benefits. That is very important, as if I lose my Geodon, I won't be able to hold down a job. Eventually I want to find a job with benefits of it's own, but that's a long time off. I feel my life is heading in a better direction now, hopefully it will continue to do so.

I know several people are going to gripe at me for this, but I had two cups of coffee today. But I did, with lots of help from purpleglitter, get my forms for the Department of Mental Health and MassHealth filled out. I'll be sending those off tomorrow with the phone bill and gas bill. For now, I'm going to smoke some pot and write a stream of consiousness post. At least that's the plan.

I saw my pdoc today. She hadn't gotten my message about having to get pre-approval on my Celexa because she's been out sick. So I still haven't gotten my Celexa. I still haven't gotten my prescription antacid as well, need to call my primary care doctor and see what's up with the pre-approval on that. Today my pdoc gave me a prescription for Provigil. Something I really need as my other meds sap my energy. Well, as it turns out, under Romney Masshealth won't cover my prescription for Provigil, period. Pre-approval or not. And I can't afford to get it on my own. I hate Mitt Romney so much right now. He just squeaked by in a very close election. We're stuck with him for another 2 years.

Romney's planning to further gut the already gutted MassHealth.

and

New wealthier gay residents in Bay Village see drag bar Jacques as an embarrassment and are attempting to get its licenses revoked

I'm sick and tired of this snobby hypocritical pseudoliberal state.

I get back home and find a letter from MassHealth telling me my benefits were cut as of the 21^st. I called the number on the letter immediately, as I know this is an error as I was told I would not be cut. I was told I'll get a call back tomorrow, but I'll be in the partial program then. I can't get my new prescription tonight. Grrrr... I'm going to call my intensive case manager tomorrow and talk to her about it.

Pharmacist: The dosage change won't be processed by your insurance until tomorrow. You'll have to come back then to pick up your medication.

Me: I guess I'll just have to go without my psych meds tonight.

Pharmacist: I can give you some now to hold you over.