Saturday, December 27, 2008

Oh christian day of presents... how I loathe thee

And I'll tell you why Christmas is not one of my better holidays.
I haven't figured out a way to avoid going to my mother's for Christmas and every other mandatory holiday. I don't enjoy being here for many reasons. My most grating is that she and the majority of her friends still refer to me in female pronouns. Annoying. Another good reason to hate Christmas is the Dollar Store. Instead of saving her money to get something good or, better yet, saving her money so she's not always taking from her retirement fund (considering she has no life insurance) Christmas is a holiday in which my mother buys everything for everyone at the dollar store. People she barely knows to her near and dear have a merry dollar store xmas. Now most of the things shes buys are thoughtful gifts. But I really didn't need a penguin hand warmer, or a pack of pirate stationary. (By stationary I mean a small package containing maybe 3 stickers, a pencil, and pirate erasers.)
I know, wah wah wah poor baby some people don't get anything for Christmas. Yes, and I wish I was one of them. Christmas at my mother's house is the most depressing time of the year for me. I'm constantly anxious and lonely which leads to massive amounts of drinking and drunk conversations I don't remember or wish I didn't.
Tuesday night we got a surprise phone call. Apparently during the power outage/ice storm my mother was feeling mushy and sent a xmas card to her ex mother-in-law (read: my estranged grandmother.) So my mother picks up the phone and starts talking to her. I was shaking my head back and forth so fast I'm surprised i didn't cramp. Not wanting to be around for the convo, I took one of the longest showers of my life. And my mother didn't even tell the woman that I'm not a grand'daughter' anymore. Then again, her own daughter i living with a woman and she thinks they are literally just sharing a house. So maybe grandma's not ready ;P
This Christmas Eve my mother invited everyone she ran into during the holiday season to our house. She ran around all day cooking and cleaning and running herself ragged. Who shows up? Her friend Karen and her 13 yr old son, Zeth, because we get together EVERY xmas eve. And then David, her crazy alcoholic boy toy. More on him later. So basically Zeth and I watched the oddest xmas movie ever (The Flight Before Xmas) while our mother's were in the basement smoking pot. I was trying desperately to get drunk off of 30 proof eggnog but eventually gave up.
Christmas Day isn't much better. My mother still makes the same fuss about xmas as she did when I was little. She prides herself on the amount of presents under the tree for me. Do tissues really need to be wrapped? She even wraps up presents for her cats, which sadly are too old to play with the toys she buys them. I brought my cat home for the holidays and he has provided some entertainment. Especially when, on xmas eve, he jumped on the dining room table which was already set for xmas dinner. Luckily he didn't do too much damage.
My grandfather is the only member of the family we talk to since my grandmother died 3 years ago. I had a good time with him, probably because I made up in my mind to go one for one with him on beer. My grandfather can hold his liquor better than a 4th year frat boy. I shortly moved on to champagne...and the bottle was soon gone. I watched the celtics/lakers game. One of my mother's friend's daughter, Michelle, came over later and started drinking with me. I was very vocal by the end of the game. Now, after running around for two days to entertain the masses, you'll notice in this story that NOBODY.SHOWED.UP. My mother doesn't realize that everyone usually has obligations on xmas. It's the only reason I was there. Obligation. So on xmas my mother fell asleep on the couch at 7:30. Michelle and I continue to drink and talk, we move on to cheap vodka, it's now like 11 o clock... and my mother wakes up. She heard us talking about the fact that both our parents have substance abuse problems and surround themselves with losers, but luckily she was groggy and didn't catch most of it. Around 1 she drove Michelle home...and around here the night gets foggy. i know I talked to Angela online but I don't know about what, and I called one friend 13 times when she didn't pick up. ( Because she already passed out from her own night of drinking.) And I sent some pretty embarrassing texts. The day after xmas I was hungover until about 3 in the afternoon, and my mother didn't even notice.

I'm packing up all my stuff tonight so we can leave for home in the morning. I actually have no reason for getting there so early, I just don't want to feel this way anymore. Someday I'll figure out a better way of coping with the holiday mess ;P

Last night she went out to the neighborhood bar and her boy toy David met her there. He only uses her for sex, pot, and food. She's fught with him like 9 times and always says "This is it." Last night I guess he said he just wanted to be friends but still get everything she gives him. She left the club at 1 and thought he was right behind her. She then said, I'll give him an hour. He shows up at the house at 4am. So I'm in my bedroom wondering if I should get dressed and/or call the cops as they yell at each other through the window. He said he wanted his "beer" which was in the fridge. The guy dordn't drink beer. He drinks smirnoff ice. She said later if she had brought it to him she either would have cut his face with it or thrown it through the window of his mother's car.

Yes, i also don't get a whole lot of sleep when I'm here.

And that, boys and girls, is the reason I don't live with my mother. I'd kill myself, or develop a nice drinking problem in the process.

Thursday, November 20, 2008

As told from my paper

Another one of my famous meandering posts.

11/19/08
So here it is, the coldest night of the year and I'm wandering around Boston with a full bladder and a vague idea of where I am and absolutely no idea where I'm going.
Saved by the golden arches and their for customers only bathroom. I also thank them for their pen which still has the metal ball chain on it. Not very secure. They should get a refund from staples.
The only thing saving me from being labeled homeless is the library copy of The Fellowship of the Ring shoved in my back pocket.
Am I really the only one noticing two kids making out in the middle of McDonalds? Right in the middle of their friends. And the guys pants are so low that half his underwear is hanging out. Yes, you can see crack. Really now, what's the point in wearing a belt in the first place? I'd also be afraid that if I was heavily making out with someone and my underwear is hanging out - well, it's only a matter of time before something else is hanging low. Maybe that's why her binder is laying across both their laps.
I think about these things. The things that take up time in your head when you're walking down the street and things you've forgotten by the time you reach your destination. Inconsequential things that don't matter and have no effect on my life. Yet I think about them and let them take my time away.
Seriously, if I wanted my jeans around my knees I'd wear shorts.
It's 25 degrees out with a God knows what wind chill and I'm thinking about ice cream. About how good ice cream will taste until I walk outside and the cold air slaps me silly. And then I'll regret my decision of ice cream. But only for a moment because I can still taste the vanilla and chocolate. And then I really will when I burp. And I'll laugh to myself because despite the frigid wind, ice cream was the way to go.
The silver chain swings from the end of my stolen pen.
It must have looked pleasant when I yanked the book out from my back pocket. I think I may have grunted. My inner thighs are hurting from my jeans rubbing against cold skin. I saw a guy jogging in a muscle tee and shorts and I promptly exclaimed, "GOD!" to nobody.
I think being cold is something that comes with age. I remember being warm enough in jeans and a hooded sweatshirt during a snowstorm. And I see teenagers now who seem to share that sentiment. I would scoff at the idea of wearing a hat, gloves, and never ever a scarf. Now I'm dressed in four layers plus a jacket, my UPS baseball cap, and a winter hat that ties under the chin. And unlike every other day, it's tied and I'm huddled into myself much like a pissed off turtle. And who passes me but a Boston college student in a light jacket that isn't even zipped up all the way, moseying down the street like it's the middle of April. Put on a damn hat, moron!
It's nice and warm in the hotel lobby. The best thing about this stolen pen is it's built in amusement. When I pause in my writing I stare off into space and make the chain twirl around and hit the pen. I'm wondering what brings all these people to this Boston hotel on a Wednesday night. Well, except for the staff. I think I know why they are here. Swing swing swing thwap thwap thwap.


Oh, and PS - I never got the ice cream.

Friday, November 14, 2008

And this makes post #50

I always seem to crawl back to my blog a month after the latest installment. I wonder why this is? I must say I do think about blogging every week or so. I mean, let's face it, I could write for days! But I never do. C'est le vie, I suppose.

I finally had my rituxin infusion on Halloween. There is nothing quite like being pumped up with 50 mg of IV benedryl while watching The View. Star Jones dressed up as a giant penny really flipped my shit. I dosed in and out for the first two hours. Other than that the day was uneventful. I stayed up late the night before carving my pumpkin: Sarah Palin with fangs. She was a hit.

I've been reading a lot. I'm trying to get back into the swing of writing. The first day I tried I got out over 600 words. I haven't touched the piece since. I decided that I want to at least attempt to become a struggling writer. It sure beats just struggling.

A few months ago I began filling my free time with entering many contests online through slickdeals.net. I've won many free music downloads and a bag of chocolate, but other than that I've been unsuccessful. With my free internet gone at home, I haven't really spent much time entering contests. Until I won one.

Yes, that's right. This kid is the proud owner of a Zoo York Jenna Jameson limited edition skatedeck. What's even cooler is that there were only 500 of them made. And they are selling like hotcakes on ebay. So by next Wednesday I will no longer be the proud owner of Jenna, however I will be the proud owner of some much needed moola.

I'm growing out my facial hair. No, not so I can freely wander in the zoo with the monkeys. I've come to the conclusion that my mother still refers to be as purely female when I'm not around. Well, to new people. Old people in her life typically know me and they become the ones to correct her. So I decided that I would make it impossible for her to look at me and see a female. I'm almost positive it won't work. But it doesn't look bad, so I guess I'll see what happens.

Thursday, October 16, 2008

Not how I planned on spending my day

Today I woke up at the ass crack of dawn to catch the 6:18am train to boston. I arrived at the Grismith building at Beth Israel around 8. I was slated to be there at 8:15. The nurse took me in, laid me down on the bed and proceeded to explain the procedure of said infusion. I was already a little bumped because the sign directly in front of me said no cell phones and the thought of 6 hours laying in a hospital bed wasn't appealing. However, she mentioned because of the infusion they would be giving me tylenol and benedryl to start off with. So I perked up. She then started warming my arms for prepartion of the IV. Then she asked how I was feeling. So I told her I've been battling a bad cold. RED FLAG. A doctor then comes over and asks for my symptons. Upon finding out that I have a productive cough, they call my doctor. He decided to defer the procedure until next week. So after all that I head home. The receptionist was like, "I would have been so mad if I were you.) Yes, it sucks. But the reason they sent me home was because if I had gotten the infusion with a cold I could have ended up with pnemonia. So when I get home I have to call the receptionist because she couldn't find an opening to put me in. I was back in Lowell by 11 ;P

I ordered my new cell phone and should get it by monday. I'm pretty excited. I did some research so I wouldn't end up with a piece of shit phone like I did before. It was between a Nokia and a Motorolla, and while my loyalties lie with the Motorola, the Nokia had better features....and was the Dark Knight Edition. That's right. This kid got a BAT PHONE!!

I'm hoping my cold goes away so I can rock out the halloween party.

Tuesday, October 14, 2008

October

It's a sad day when a person realizes their free internet connection has disapeared. I am still holding out hope and will continue to check for the signal. Until then I will learn to love the library more than just once a week. Speaking of the library, shortly I will approach the check out counter and ask them why a book I returned 2 weeks ago is showing up as overdue. I think the problem is on their end, not on mine. (Even though I'm positive I returned it I'm also paranoid and double checked the house just in case.)

I finally got some good news. I applied last month for food stamps because let's face it, disability isn't going to happen anytime soon and I'm running low on cash. Luckily the case worked contacted me before he went on a two week vacation so I could get my supporting documents to him so he could rush the process. Saturday I got my notice in the mail that I will be receiving a good chunk of food money monthly. It's more than I expected for one person, but it really boils down to about $5 a day. My favorite transaction so far is two frozen pizzas, soup, and a sweet potato. I love sweet potatoes. It's a new found thing. I slice them thin and make fries in the oven. Very very tasty.

Thursday I have to be at Beth Israel at 8:15am for my medication infusion. They told me to plan on being there most of the day. Excellent. The upside to this is Thursday is also the day I can order a new phone from verizon for free. Thank you new every two. As some of you may know, my current phone is a piece of crap. I can talk on the phone for maybe 5 minutes before the battery dies so if I don't have the charger with me I'm screwed. And I'm always nervous when a doctor calls that my phone is going to hang up on them. I plan on taking this infusion time to research the free phones and find the best one.

Between the prednisone and razor burn my face has become highly sensitive and blemished. I stopped shaving so hopefully it will heal itself. I'm hoping to de-Wolverine on Friday.

I have a chest/head cold that is producing disgusting stuff. I haven't been getting very much sleep because the first night my throat was on fire and the second night I kept waking up to cough. Mucinex is doing a pretty good job but not 100%.

I'll probably post more on Thursday.

Tuesday, September 16, 2008

Confessions of a sick lupus boy

Now where was I? Oh yes. My ever increasing health problems. I didn't end up in the hospital, thank god. I went to see my primary doctor a week after the initial inquiry. He ran an EKG, took blood and urine (always a fun time) and called the rheumotologist, who promptly booked me for the next day. Yes, that's right. A specialist wanted to see me immediately. We all know that's never a good sign. The good news is that it wasn't an infection or pericarditis. The bad news is that the active lupus is back and my kidney function is failing. Again. The explanation for this is that my body was recovering from ending the cyclophosphimide monthly infusions and maybe I wasn't receiving enough Cellcept. Great. He moved my prednisone from 5mg to 30mg and doubled the Cellcept. I'm also waiting to hear back from them to schedule an infusion of another type of medication. All the while my joints are visibly swelling, I can't sleep, and I'm an irritable crank pot. I'm mad because once again I'm stuck doing nothing because I physically can't do much. I get tired, I get cranky, and nobody wants to be around that mess.

I sent in my SSI appeal. This time I did my homework. I went onto their website and looked at what they classify as "disabled" under the autoimmune disease section. What I have 100% fits the description. I also took out books on lupus from the library. I was excited to fin ally realize that all the symptoms I thought were either just me or in my head were actual lupus symptoms. (At one point I thought the random numb sensation in my hands and fingers, muscle atrophy in my arms, and frequent dizzy spells/difficulty seeing were symptoms of a brain tumor.) As much as it sucks to realize you do indeed suffer from a chronic illness, it makes me feel better to know I'm not nuts and don't have a tumor ;P I tried to make my appeal sound as to the book as I could.

I try to go to the library as much as possible, although reading is a pain because hardcover books hurt my joints. (I know, I sound like I'm about 80.) I've also taken to browsing their CD collection. Don't laugh, sometimes they have recent stuff! I found a bunch of Boston Pops CDs that I'm currently uploading. When I was in high school I was convinced I was going to be in the Boston Pops. My brass group played at the state house once when Keith Lockhart was there and I was truly beside myself. I didn't dare speak. I'm hoping that this much will do what it always does and make me feel better. I will always be a band geek at heart.

My sleeping is getting worse. Not only can I never fall asleep, I've become even more irritable. I can be close to falling asleep and then the smallest sound will jolt me awake. I usually end up throwing in the towel and reading until I lull myself into sleepytime. A few weeks ago I didn't sleep at all and went to the library without eating anything. I nearly passed out and almost fell, but a nice man caught me. Luckily I was able to get back in one piece. I learned my lesson and never go out if I'm not fit to.

Another reason I can't sleep is my constant back pain. I think it might be the swelling in my kidneys. I tried Tylenol PM but that doesn't really do much of anything. I'm afraid to take too much over the counter stuff with all the prescriptions I'm on. My doctor prescribed lorazepam for the insomnia but that doesn't work at all. It just makes me more tired in the morning and slightly anxious.

I am up to my ears in student loans. Without a job, I am unable to pay them. I finally got all my ducks in a row and have all the paperwork to send out. I'm hoping that this experience will teach me not to wait until the last minute and that sometimes following up with a phone call can make all the difference.

The Biggest Loser season 6 premieres tonight. I'm hoping it gives me a kick in the pants to start eating correctly again. I was doing well for quite sometime. It seems that whenever I get sick I let myself eat whatever I want, the ultimate in comfort food. Then it's more difficult to get back on track, esp. when I don't feel good.

Speaking of which, I'm going to eat a brownie. Right now. I never said old habits were hard to break, did I? ;)

Monday, September 1, 2008

Sick of Being Sick

I was very proud of myself. I spent an entire day in the library and pounded out a resume. I even bookmarked a bunch of jobs I was interested in applying to. All I needed was a cover page and I figured I'd be applying to jobs by the end of the week. And then the chest pain started.

I called my doctor on Wednesday and he immediately double booked me for the next day. At my appointment he told me I made the right move in calling him. After listening to my chest and hearing nothing exciting, he checked my oxygen saturation. It was at 92% which I guess isn't awful but isn't good either. He sent me for x-rays at Beth Israel, so once again I waited outside for a cab that the doctor's office pays for and then rode to the hospital. I was the only one in the waiting room bc it was after 5. I was really out again in 10 minutes. I love Beth Israel for a number of reasons. One being I can get my chest x-ray taken in an undershirt and a binder. No awkwardness in being told to take my shirt off. I appreciate that. I barely made the 6:25 train back to Lowell. I missed my phone ringing but got a voicemail from the doctor. He said the wet read of the x-ray looked fine but he would check out the actual x-ray in the morning. The next morning I got a call from my rheumotologist who told me my doctor was going to put me on antibiotics just in case and watch it. So I had to stop the Cellcept while taking the antibiotics because it's an immunosuppressant. My doctor called ten minutes later to tell me the same thing. Good news, right?

Negative. This is the same thing that happened last time. The clinic took x-rays and nothing came up so they treated me for pneumonia. Twice. And then I ended up in the hospital. I think I'll give it a few days just to prove the antibiotics didn't work. Or who knows, I could feel better soon. I'm trying to stay optimistic, but I really don't see this ending without another stay in good ole Beth Israel. Hopefully it won't be as long this time because they'll have a better idea of how to treat it.

So for now I'm being bored in the house watching the 3 channels I get and surfing the net when the stolen wireless works. I'm also having trouble sleeping. Greatness ;P

Tuesday, August 26, 2008

Holler at the blog world

August has been quite the crazy month! The second week of August this dude could have spotted at numerous destinations. I got my science on at the Museum of Science in Boston and rocked out to the 80's laser show. Apparently it's a little hard on the brain if you don't have ADHD. I thought it was quite relaxing. Spent the day at Clark's Trading Post in Lincoln, NH. Who doesn't love a trained bear show, water blaster boats, and assorted other family-funness?
That night it was off to the drive-in for a comedy double feature: Pineapple Express and Step Brothers. Pineapple Express was much better than expected, while Step Brothers fell at the other end of the spectrum. I think I was the only one who stayed awake.

I received a nice fuck you letter from social security. I expected it, but it still sucks. I sent in my appeal information but I am sick of waiting around for the government to deem me disabled. I'm actively job searching and am excited about finally getting out of the house and doing something productive. The best advice I've gotten so far is to let everyone know I am job searching. I'm looking for an administrative assistant/program coordinator/ event planner type position. I', leaning towards higher ed but at this point I'm not too picky. It does have to be full time and I'm searching mostly in the Boston area. So if anyone has any leads, PLEASE let me know :)

I've loved watching the Olympics since I was young. I especially enjoyed watching this year in Beijing. (To clarify, I was not in Beijing. The Olympics were.) However, I may have watched a little too much. The other night I had a dream I was dating Michael Phelps. C'mon Vancouver 2010!!

I'm continuing to turn into a hairy beast. I'm growing a sort of goatee. I say sort of because only the lower part of my chin seems to be growing hair. It doesn't look bad and I'm probably explaining it badly. If I wanted to keep the freshly shaven look I would have to shave daily, versus a few months ago when I could go a few weeks. Oh that crazy testosterone!

I got sucked into Daniel Silva's Gabriel Allon series. Unfortunately I didn't read any of them in order. The good news is that he just came out with a new one. Hooray! Who would have thought I would get sucked into international counterintelligence assassin novels?

I fired my therapist yesterday. Well, not really. But I told her that I didn't see the point in coming in anymore. She agreed with me. The real reason is that I'm sick of paying almost $20 every two weeks to go into Boston and tell her stories that I could tell anyone. I never got any real feedback and she never pushed me on any subject. Never tried to dig deeper or extract any real problems. I'm okay with that. I'm more put together now than I was even six months ago. I have a basic game plan and I'm ready to move. I'm also spurred on by the $63 in my savings account.

I enjoy taking advantage of the free wifi at the library. I do better in an "academic" setting as far as getting paperwork and other work accomplished. ADHD adults crave structure yet most of them have trouble maintaining it. I made a list of all the things I wanted to get done today and have it next to me so I can't forget. One of the things on my to-do list is to make an eye appointment. I've had the same glasses for at least 5 years and other than the fact they are disgusting and falling apart, I know my prescription has changed. My insurance covers one eye appointment every year and free glasses. I'm pretty excited about that. Once I can see again I'm getting my driver's permit. Yes, you heard me correctly. For the third time, this kid is getting his permit. I guess technically this will be Sean's first permit... ;)

This past weekend I went to the cape with my mother. I don't if it's because I'm getting older, the testosterone, or if it's just her, but I can barely stand her. Let me clarify.
My mother was diagnosed with bipolar disorder ten years ago. She was on medication for maybe a year and took herself off because it would knock her out and she kept being late for work. Yes, took herself off instead of calling the doctor and asking him to adjust it. She smokes marijuana and since she quit smoking cigarettes two years ago, she smokes more weed. I counted at least 5 times in one day. I'm also wondering if she has an undiagnosed personality disorder. She has one full time job making $15 an hour, a part time job and a job working security on and off. She doesn't have a savings account and lives paycheck to paycheck. She doesn't pay a mortgage because she inherited her house and it was long paid off. I think she pays $600 a year in taxes. Now I know you're asking yourself, where is the money going? No, not the marijuana. Well at least not all of it. No, she buys random "gifts" for friends, acquaintances, etc. She also goes out clubbing (yes, clubbing) and I'm beginning to think she's developed a drinking problem. Her mood swings are pretty dramatic and she tends to place the blame on everyone but herself. My favorite quote regarding this is once in highway traffic she said, "Either all these cars can't drive or it's me!" And the best part is that she didn't think it was her at all. She's also a very unsafe driver and drives under the influence. And she can't follow directions. We get lost every year in the same place on the cape. I try to help her out but she usually goes her own way anyway. God forbid I make an educated guess and am wrong, then I get all the blame.

I saved the best story for last. Wednesday night my mother picked me up and we went to her house. She told me she was fighting with one of her friends because this friend said she heard somewhere that the man my mother is sleeping with was arrested. So I immediately hop online and google the guys name and the telegram and gazette, which is the local paper. Sure enough, this guy was arrested the first week of august for prostitution. Yes, prostitution. Anyone else would be like, okay you're gone. First of all you don't tell me you get arrested and secondly it's for selling your body on the street. And let's be honest; women don't pay for sex. He must be a gay prostitute. Not my mother. She tells me that I don't understand, they get along very well and have a good connection. And he's cute. I don't care if he's Jesus!! Or Brad Pitt!! I also explained to her that people who sell themselves on a street corner are doing it for a reason, usually drugs. She didn't really seem to care. He called the last day we were at the cape and she acted like nothing was wrong on the phone. I told her I would have told him to fuck off and if he asked why I'd say you know why and hang up. Maybe I'm passive aggressive like that or maybe I'm afraid I might hit him.

I had a dream that I told my mother I refused to let her be a part of my life unless she got help. The problem is that she doesn't think she needs help and she'll just be angry. The whole time we were away she kept saying this is relaxing. I wanted to scream at her, no, this isn't relaxing. I feel like I'm spending time with a crazed 16 year old who just got her license and wants to party all the time. I feel like a parent who doesn't approve of his daughter's choice in men. Unfortunately she's 48 and I have no control over what she does. But I'm afraid if I cut myself off from her she'll got nuts again. I've already called the ambulance for one of her suicide attempts, I don't want to be put in that position again. Damn you, Janet!!

Thursday, July 31, 2008

Ramblings

I accidentally started watching Last Comic Standing last week. This week I found myself voting. That's not as bad as when I accidentally started watching baby borrowers. And watching the ENTIRE series.

Today I took the bus to wal-mart for vacuum bags. Yes, you heard me correctly. Yesterday I checked at walgreens, market basket, and cvs but no vacuum bags. Last week I brought a couch down from the third floor. I had to take half of it apart and it took me 2 hours. Other than being an extremely physical ordeal, I think it went well. I made it out with only a small scratch on my finger. However, it left quite a lot of debris on the stairs. When I went to use the vacuum attachment all this crap started coming out of it. So I checked the bag....which had never been changed. The vacuum is two years old. My bad.

So I went to wal-mart and was overjoyed when they had the correct bags. I also got a can of spaggetios, a can of tomato soup, a can of cat food (for the cat, not me), and a composition notebook because a) I heart composition notebooks and b) it was only 50 cents. Score.

I came home and vacuumed (after trying to figure out how the bag went in) and shampooed the rug. I'm still not convinced I'm using the machine correctly, but at least the rug is cleaner than it was. After it dries I can move all the furniture back. I'm not a fan of having a couch in the kitchen, although the cat likes sleeping on the TV stand in the kitchen.

I think my allergies have finally started to bother me. The large amount of prednisone kept my symptoms at bay all summer, but now I'm down to 5 mg. I've been getting bad sinus-like headaches and I couldn't find the advil, so I popped one of my final oxy pills. My headache has gone away and I'm feeling pretty good. I'm also hoping I can get some sleep tonight. I was given pills for sleeping but they haven't been working well. I'll fianlly fall asleep early in the morning nad not wake up until noon. And I'll be groggy for quite sometime. I've gotten the nickname "Droopy." I'll give it another week and then call the doctor.

Saturday, July 19, 2008

July and it's update

Here it is as promised. One (1) blog update! I'm at my mom's house for the weekend. Yesterday she took the day off and we stained part of the deck. The illegal-no-permit deck she's had for 4 years without treating it with primer or stain. A lot of the wood is splitting, and when I brought this up to her (how you can't leave wood untreated for this long,) she told me she thought the wood was splintering from the high powered wash it was given. The whole structure is rickety. If I knew more about wood structures I'd estimate when it will collapse. While staining I started drinking 1 pint of Smirnoff Ice Strawberry. To offset this (so i thought) I was also drinking water. After awhile it's too hot so I head inside. I finish the drink and have a mikes hard cran-lemonade. Also constantly drinking water. Now I'm not sure if it was the alcohol or the sun or both, but i woke up in the middle of the night with a piercing headache, my face as burning, and I was cold. Drank some water, went back to sleep. In the morning I was fine. Odd.

I just washed my binder and hung it outside to dry. Considering it's the only one I brought with me I'm hoping it dries quickly.

I got my haircut Thursday night. I think it looks good. Unfortunately my sideburns also got chopped off. I'm sure they will grow back....eventually.

June 29th I was one year on T. It's almost like a birthday in that I didn't feel any different. It was just like any other Sunday. I'm happy with the results of the T. I keep getting hairier. The funny part is I have one giant black hair on my arm. Just one. I think it's a precursor of what is to come. My acne is getting much better. I'm only on 5 mg of prednisone (I started at 80mg.)

My doctor mentioned that the only health-related obstacle I could have re:chest surgery would be the prednisone. So once I'm off it and have $5,000, I'll go for it ;P

I went for my disability screening re:adhd. The gentleman was very nice and told me I should hear in 2 to 3 weeks.

On July 1st I had my last dose of cyclophosphamide. YAHOO!! I have a doctors appointment next week in which I believe they are going to start me on Cellcept. Last week my doctor called to tell me my white blood cells were low. We'll see if that is better.

I've been keeping myself busy. Last weekend I visited Abbie and Elisa in NYC. We went bird watching and even ate at a vegetarian fast food restaurant. My thoughts exactly. We met up with Eric and had a grand ole time catching up with a few beers on his roof in Manhattan. I must say I was sad to leave, but I hope to visit again soon.

Tomorrow is Conor's baptism, hooray! Almost 3 months old and I haven't met him yet so I'm extra excited. I'm taking the train from Worcester in the morning so I'm packing my baptism duds to change later. I mentioned wearing shorts but was shot a death look. Pants it is! I'm going to do my best to be less awkward than the christmas party. I'm getting used to walking into places by myself, not having someone to hide behind. Plus I find that the deeper I get into my transition the more confident I'm becoming.

This month I recommend The Last Lecture by Randy Pausch and Diary by Chuck Palahniuk. Both of them I couldn't put down. The Last Lecture made me tear up more than once.

For music I recommend Viva la Vida or Death and all His Friends by Coldplay. As a new Coldplay convert, I'm now racing to catch up with their old stuff.

Comments are always appreciated. Suggestions are always processed. Chocolate is always eaten.

Tuesday, July 15, 2008

Consider this a promise ring

The bad blogger hath returneth. I will be visiting my mother in Worcester this weekend. I will have plenty of time to cliff note the past month. Yes, that means I'm promising an update in the next few days. Tar and feather me if I'm lying.

Monday, June 16, 2008

Holy one month later, batman

I am an AWFUL blogger. I apologize to my legions of fans (if there are any of you still out there!) Within the past month I've noticed an insane amount of body hair growth, especially notable on my legs and thighs. I've been told my back is also getting pretty hairy, however my neck doesn't quite stretch that far back so I am unable to confirm at this time.

I changed the voicemail on my phone because I was told my voice was much deeper than the previous message. I was also told by a friend with whom I hadn't spoken in a while that they thought they had the wrong number when first hearing my voicemail. And that was before I changed it.

I went to the casino a few weeks back. It was the first time I've been to any gambling establishment and wasn't carded. That's correct. Not once did they ask to see my ID. Boo yeah.

I didn't go to pride this year because I had no one to go with ;P And after the debacle of going to pride alone last year, I skipped it. But I did read House of Sand and Fog, which kicked ass.

I've never been into fantasy/science fiction novels. At the end of the senior year in high school I picked up a book by George R.R. Martin called A Game of Thrones. I was unaware at the time that this was the first in a series called the Song of Ice and Fire. Slowly I read through the second and third books, thinking I was done. Oh no, I found out there was a fourth. I just completed the fourth book and the last page tells me there is another one. Now, I have been reading this series for seven years and need to have some closure! Last night I checked his website and found out that not only is the 5th book not completed (it's slated for the end of the year, hopefully) there are two, that's right, TWO books AFTER THAT!! As a friend of mine who is also reading this series stated, the author is an older gentlemen, what happens if he dies before the last two books are written?? That, my friends, would be a sad, sad day. Oh yeah, and it doesn't help that all the books are over 500 pages.

At the end of this month I celebrate my one year testosteroneiversary. The longer I am on it I find it is more difficult to see changes. Others are more likely to see them because I've just gotten used to it. For example, my mother noticed that my shoulders are becoming broader. My neck is also thicker and I've got a bigger head. Which is lucky because all my hats were too big to begin with. The neck thing became a problem when it took me almost 20 minutes to button the top button of my dress shirt without injuring myself. I haven't encountered any problems with injecting the T in a long time. I make sure that I'm doing it at least 6 inches away from the knee. I think any problems I was having before was that I was trying to inject it not in the thigh and just in the leg.

I'm down to 10 mg of prednisone, hooray! I have an appointment with my rheumotologist on Friday in which he's going to play medication twister per order of the kidney doctor. July 1st is my last dose of cyclophosphamide which is really exciting. I'll be happy to get on a low dose of meds and get on with my life.

I still get tired easily and have to be careful during certain activities. For example, if I spend Friday night drinking like a fish, I should know that I'll be wiped out for the rest of the weekend. And if I do a 6.5 mile benefit walk, consider the next day a wash. And probably the following week as well.

Now that I'm getting closer to a clean bill of health (or as clean as I can possibly get) I look forward to job searching and doing something that I enjoy. I'm still waiting on social security. I have to see a psychologist on July 10th so they can get more information. When I asked why this was, she explained to me that because they don't have anything on me having ADHD on file, they just need to get it documented. She stressed that this can only help me. Here's to hoping.

Well, I'm off to fix the ? key on my keyboard because it fell off. I'll try not to be a stranger.

Monday, May 19, 2008

My oh my (for lack of a better idea)

When I first applied for disability I sent in paperwork to both my loan companies explaining my deferment. Me being me, I submitted my name change to only one company and couldn't remember which one. So I sent all the paperwork under sean. Big shocker, I never heard back from either one. Last week I received a message on my voicemail for Sarah. I checked my account online and sure enough, they didn't get my message. I'm going to use the economic stimulus check I received to pay the money I owe from the deliquent months and send them the name change paperwork. Hopefully then I can get a deferment. The woman called again today and I answered. When she asked for Sarah, I told her she had the wrong number. Upon checking the number with me, I responded, yes, that is the number, but there is no Sarah here.
Perhaps not one of my best moments ;P

When applying for disability it is made clear that some doctors visits/additional tests may be required. I received a notice from them last week stating just that. I applied for disability when my lupus flared and sent me into the hospital. My doctors told me I needed at least 6 months of recovery time with the aggressive treatment. I applied because of a physical disability. Can someone tell me why the disability office set me up for an appointment with a psychologist?? The only things I can come up with is they are just checking on the diagnosis of my GID and ADHD. Unless they just want to prove I'm a crazy tranny trying to screw the system ;P

My last few doctors appointments went well. My last ANA test came back negative which means the lupus is inactive. It looks like the treatment has successfully wiped it out for now. The Nephrologist doesn't see a point in repeating the kidney biopsy at this time. My prednisone dosage is continuing to decrease. I won't be surprised if they keep me on a low dosage for minimum another 6 months. A low dose of 10 mg is MUCH better than the 60 I started on in the hospital. I'm hoping to start job searching at the end of the summer. If I get disability I will only be able to work 20 hours or less. If I get denied disability I have to decide whether to appeal the decision or just drop it. One of the reasons I'm not dropping it is because if I get disability I will get retroactive pay from February. Another reason is just because I'm getting better doesn't mean it won't happen again. However I am sick of being sick and the thought of a full time job is happy time.

In other news, I am the proud owner of a wireless internet card and a webcam. (1 <3 ebay) The wireless card is a little finiky and will not pick up networks that are too far away. Like if the wireless is coming from the lobby and I am on the fourth floor, I wont pick it up. I am using it right now so I know it the right conditons it does indeed work. There is something nice about using my own computer again. Tyler (the name of my laptop) and I have been through the ringer. He's been shipped back to the company twice and had his hard drive fall out when I tripped over the wire. This is the first time he's been connected to the internet in almost 2 years. Welcome back to the world wide web, Tyler! Another fun thing about having Ty up and running is all the old pictures I have on him. Whoo!

The webcam is an older model but was recommended and works fine. I participated in my very first video chat. It makes one reconsider surfing the net in one's underwear. I'm exciting to record a video podcast, perhaps to commemorate 12 months on T. I'm sure I won't be able to wait the month and a half to make a video. We will see.

Wednesday, May 14, 2008

Blog of mini stories

Over the weekend I experienced a funny bathroom incident. After riding in a car for 4 hours and walking through an unfamiliar mall for 15 minutes, I finally find a bathroom. Only problem is, the men's room is out of order for cleaning. Luckily the cleaning lady sees the pain on my face and lets me into the women's room. When exiting I noticed she wasn't letting any lady in until I left. At least this time there really was a man in the woman's room.

I was mowing the lawn and raking up the excess grass. I raked up what appeared to be a worm. Upon further inspection my worm looked a lot like a snake. Yes, I found a baby snake. He was probably about 6 inches long. Smaller than the SECOND one we found. The second one was upset because he got launched across the yard. He coiled up and opened his mouth at me. If I wasn't wearing shorts I would have been bolder, but I was afraid of getting bitten. So I attacked him with weed killer.

About two weeks after I filed my taxes my federal refund check was deposited into my account. Last week my mother texted me to tell me that a tax check came in the mail. Odd. She mailed it to me, and to my surprise it was addressed to Sarah. (The check, not the mail from my mother.) So I signed it over to myself and went to deposit it. The woman told me I couldn't deposit Sarah's tax refund unless she was also on the account. I told her that I changed my name and that was my tax refund. She said Oh and asked for ID. Then she deposited my check and I went on my happy way. When I got home I checked my account online and saw that my stimulus check was deposited. I don't quite understand why the federal government got it right and the state didn't.

I am a coupon warrior. I clip coupons and go through ads to see what's on sale. When it is on sale and I have a coupon, I buy. Glade spray is on sale for 97 cents at CVS and I had a buy 1 get 1 free coupon. However, when I used the coupon the cashier said the total came to 26 cents. I paid and left quickly. When she scanned the coupon it took off the maximum amount stated on the coupon, which was around $1.56. Definiatley the best deal I've gotten so far.

Tuesday, April 29, 2008

Adventures in Chemotherapy II




It's that time again where I sit for 6 hours to receive my monthly intake of cyclophosphamide and everything that comes with it. This late in the afternoon the place is empty, so when my IV beeps they know it's me. This is the first time I've done this alone. I must say it much quieter and less stressful without my mother here. It's a little lonely, though.





One thing I hate about it is that people assume I have cancer. I don't have cancer. And I feel bad that the people who have cancer feel bad for me because they assume I have cancer. I should get a lupus tattoo on my forehead. One of the volunteers was going around telling people about a cancer benefit they are doing on June 8th and strongly urged me to go. I wanted to be like, I really don't have cancer. But I said nothing, nodded and took the flyer. Another patient who was apparently here the last time I was asked if I was coming again in 2 weeks, I said no, 4, and then she asked how many I had left. And I wanted to say, I don't have cancer. But she does, and I feel bad. So I said, 3 or 4 and she said she hoped I felt better. I said I hoped she did too and I waved her goodbye. Not that my disease is any less urgent then cancer, I mean obviously I'm being treated the same way. It's just frustrating.





I should be done in about an hour. I'm really tired. I watched the first disc of Arrested Development which is a funny show. I'm all hooked up with the laptop, my headphones, and my ipod plugged in. When I get up to pee it's quite a production.








Jesus CHRIST why do I keep beeping!!


Today I've been on testosterone for 10 months. I can't believe it's almost been a year. I look at pictures from before and read my old journal and it's all so surreal. I feel so much better being myself. I pass 100% of the time and the only time I'm nervous is when I'm interacting with people who knew me before transition. But that's usually just me being paranoid, everyone has been great. And I'm realizing now that just because I assume people know that I transitioned I can't be positive. So if I'm seeing someone I haven't seen in awhile and they are expecting Sarah, I have to be prepared for that. Because I am DEFINITELY not her ;P


I've started to grow out my sideburns. And by grow out I mean you can almost see the fuzz ;P I'm hoping it'll look a little better when I get a haircut. There is nothing I can do about my predisone-induced moon face. I'm just glad the acne is better under control.

Thursday, April 24, 2008

Why I'm walking

My Participant Page

I didn't attend the wake or the funeral. I'm not sure who stayed with me on those days, but I remember my parents dressed in black, my mother clutching the black leather rose she was leaving in the casket. Later they told me how the Harley Davidson roar behind the funeral procession sounded and what it looked like to see one of the cousins, a grown man cry as he knelt over the casket. It took years for me to forgive myself for not attending the services. I was 10.

Mark was the crazy relative who brought the best presents and showed up after the party ended so he could have me to himself. My mother always said he was her favorite cousin because he was like her. He and my father got along great. They had the same taste in music and snake boots. He lived a reckless life full of women, drugs, and motorcycles making him one hard needle in a haystack to find. After one of his many disappearance acts, my mother tracked him down to make sure he attended their grandmother's anniversary party. She told him that it was imperative he attended because who knew how long Grammy would live for. Nobody thought he would die first.

I don't remember how my parents explained AIDS to me. I'm not sure they understood the difference between HIV/AIDS or anything about it, really. My mother began checking books out at the library. She became friendly with the people at AIDS Project Worcester. At nine years old I knew more about the disease than most people will ever know in their lifetime. I got a first hand account of the devastation it leaves.

He was living in a Hospice on Mission Hill in Boston. Every Tuesday and Thursday night my parents and I would pick up my Grandfather and visit Mark. In the beginning it was fun. We picked up dinner for everyone, usually Domino's or some form of Italian food because that's what he always wanted. He would joke around with me, always getting my doofy kid smile. He offered me juice boxes but I always declined. I hated Ecto coolor. I would always take the candy. As time wore on the visits became less pleasant. My parents explained to me that if I didn't want to go anymore I didn't have to. I spent a lot of time coloring in a room upstairs. I drew a picture with all different kids depicted, it was very diverse. I think I even had a wheelchair. I wrote something about accepting everyone no matter what. I gave it to the Hospice and they hung it up. I think they ended up sending it to Washington to be in an exhibit.

One day I told my parents I didn't want to visit Mark. He was almost completely non-responsive. They had to feed him through a tube. He didn't know who I was anymore. That weekend we went to an amusement park to celebrate my 10th birthday. I brought back a Harley Davidson pig that my dad won to give to Mark. We were all in the kitchen when the phone rang - nobody was surprised.

That first year his entire family participated in the AIDS Walk in Worcester. His mother had shirts made with his name on the back and a picture of a motorcycle. I walked with a giant stuffed Harley Davidson bear on my shoulders. My father joined a team and we walked the AIDS Boston Walk that year. And the next. I drew a picture of two guys that looked the same. Under one I wrote "He has AIDS." I listed all the things that were the same about the two boys and that we should love people with AIDS. My dad's team at work made my picture into their t-shirts that year.

And then we stopped walking. I got older, we got busy. My parents got divorced, I was in high school. Then I went to college. And although I didn't realize it, I carried my t-shirt from the first walk with me through all of life's many stages.

I made a pact with myself when I was 10 that as soon as I was legal to drink I would bring a can of Guinness to Mark's grave and pour it in. I've done it three times. His mother called my mother to ask where the can came from.

Tomorrow it will be 15 years since his death and I still think about him. How, even though he was reckless and contracted this awful disease, he used what was left of his life to make amends. He got clean and joined a sober biker club. He patched things up with his parents. He was involved with experimental drug testing so those to come after him would have a shot at a better life.

That is why I'm walking in the 2008 Boston AIDS Walk. I want to give back to an organization that fights the disease that took Mark away. Whenever things go wrong, especially family matters, my mother will go to his grave and yell at him for leaving too early. She said he always made things easier to deal with.

I would appreciate ANY donations. Really, if you want to pledge 1 cent, I'll happily pass it along! If you want to donate but don't want to do it online, they accept donations by check (mail) or even credit cards over the phone. And if you want to meet in a dark alley to shove cash into my pockets, I'll make sure they get that as well.

More information: AIDS Walk Boston
AIDS Action Committee of Massachusetts
Donate!

Tuesday, April 22, 2008

What's up all you loyal blog viewers! I apologize for my absence. Ironically I've been keeping up with my written journal on a pretty regular basis. Unfortunately for you my private thoughts usually stay private.

I recorded a sound clip of my voice. I didn't realize that it's been over 3 months since the last one. After my hospital stay I became disenchanted with the whole testosterone process because I had heavier health issues on my mind. I also don't want to be the guy who points out every new chin hair.

I love going to McDonalds in the morning for breakfast. If I get my timing correct the building is filled with older ladies and gents discussing various topics over coffee. There are two distinct sections: women and men. Although mixed couples are known to mingle among them. I don't go enough to identify specific people, but if I'm lucky I can eavesdrop on conversation. One time a man was explaining to his friend that he didn't like the way his wife made sausages. In which his wife replied, yeah, he doesn't like my sausages. He went on to explain that this morning he woke up early and couldn't sleep, so he made sausages! She said, and they were good. Obviously they didn't come to McDonalds for the food.

Because of Patriots Day trash pickup is delayed one day. Except nobody in Lowell knows that, so they all put their trash out last night. I walked away with a shit load of pepsi and coke points. I'm not a crazy trash digger. I do not go through closed trash bags. But if I see a cap through a clear plastic bag, I'm going in. How else can I get free game rentals from blockbuster and a pepsi beach towel?

Tomorrow is my 25th birthday. When I was younger I looked forward to my birthday all year long. Through a series of disappointments and the worst birthday ever (15) I don't get as excited as I used to. I usually try and brush it off as just another day because I'm scared if I get my hopes up they will be crushed. So I'm going into tomorrow with an open mind. My mother is driving up bright and early to take me to Maine. I don't know why. She wants to go to the Maine diner, walk on the beach, and go shopping. Hopefully it won't be too painful.

http://soundboard.com/sb/seanie314.aspx

I listened to all the recordings of my voice. Crazy shit, that is. It's amazing to me how something like hormones can literally change the makeup of your body and produce changes that are so vivid. And permanent, which is exciting. Anyway, it's off to cleaning.

Thursday, April 3, 2008

Music and More

I woke up at 9:30 this morning. The plan was to go to the library, pick up my prescriptions at CVS, and come home. While watching The Rachel Ray Show and eating last night's leftover Italian sub, I decided I still didn't feel well enough to go out. Unfortunately I made this decision after taking adderell. At least I was able to finish a 658 page novel.
I spent the day cleaning up around the apartment which tends to go to shit after chemo. I'm also in the process of going through old mix CDs from back in the day. I keep the tracks I want and toss the disc. Unless the mix is quality, then the CD goes back with all it's other CD friends.
I was singing along to Oasis and I realized why all emo bands are so whiny. They can't help it; it's the voice! You figure most emo bands get their big break when they are still in high school, so their voices aren't 100% mature. As I write this I realize I am asking you to stretch your minds to feel bad for the emo kids... in that case, fuck it. Emo bands whine. End of story. ;)
I love music. Let me rephrase. I love GOOD music. I love everything about it. The vibrations good bass makes through the floor, guitar riffs, good lyrics. I say GOOD because I'm not a fan of music done badly. It does me and society (mainly, our ears) a disservice. As I listen to the songs on these various CDs (some of which go back to my high school days) the music transforms me to the place I was when this cd was created. Some of those times aren't nice times, but they were part of my life so I don't mind visiting. Like this track, for instance. You Spin Me Right Round by Dope. A classic cover. Dope played the 1998 Locobazooka concert in Worcester, MA. My friends and I were sophomores in high school and my dad and his girlfriend took us to the show. Of course we parted ways right away and hooked up with other kids from school. I then got really high on what we found out later was laced weed and wandered around the grounds for hours. Luckily I had really good friends. I also saw a girl with both her nipples pierced mud wrestling. I've been fascinated by nipple piercings since then. See what memories one song can bring? ;)

Until I have something better to say!

Tuesday, April 1, 2008

Adventures in Chemotherapy

I found out today that beth israel has wireless internet. Score one for me! I surfed the internet for hours before finally popping in a movie. I checked Art School Confidential out of the library having no idea what it was about. I enjoyed it thoroughly. It's about a boy who wants to be a great artist so he goes to Strathmore Art School during the time there is a strangler afoot. He struggles with finding his own artistic voice while trying to get the girl. A surprising twist at the climax of this movie puts it at the top of my list. I highly recommend it.
6 hours of sitting with an IV attached is MUCH better with access to the world wide web. I also consumed at least 5 rice krispie treats, two bags of chips, and a sandwich. Having a laptop in front of my face also makes it easier to ignore my mother. Her stories are juvenile, immature, and make me feel like she's in high school. She's irresponsible and leads a dangerous lifestyle with her recreational drug usage and drunk driving escapades. The older I get the less mental neurons I can lend to her. The best I can do is keep myself sane in her presence and hope that when something happens to her I will be able to find the money to bury her. As cruel as that sounds, it's something that I have to think about for the future. She doesn't have a will, life insurance, a savings account, or anything set away. She constantly gets in debt and borrows from her retirement fund. With a full and part time job, I don't really know how this is possble. But it happens. Often.
Enough of that. Although that did seem to flow very freely with her being right in front of me talking. Speaking of flowing freely (not peeing) last week I started to write my first piece in awhile. I was astounded at how quickly an hour went by and how much I had written. A full 2 hours passed when I finally packed up and went home. I've begun to put it into microsoft word. I can't decide if I want it in essay form or if I'm going creative non-fiction on it's ass. The best part is that it's a story about the four month time span I worked at Friendly's when I was 16. Yeah I know, crazy shit.
Well, time to take out the IV! Hooray! Happy April :)

Thursday, March 27, 2008

Good news

My face is clearing up! I've noticed a conciderable difference from the last picture I posted 8 days ago. I also got a haircut which makes me look less greasy in general. I had a little bit of a cold this week so I've had to force myself to lay low. I feel much better today than yesterday, so that's a plus. Next tuesday I have chemo, which is always a good time.
Yesterday I stumbled across this frightening article. (I say frightening because it brings up so many issues, both medically and emotionally, that are hard for anyone to wrap their minds around.) I wasn't going to comment on it, but I feel like I'm posting it so I should.

Pregnant Transman

So what do I think?

It's difficult for me because I want to say good for him. Way to be secure enough with who you are enough to defy every gender boundry known. However, I can't do that. Knowing what I know about the effects of testosterone on a female's reproductive system, I am astounded that his eggs were able to be inseminated. I was reading that there has been countless studies about the effect of testosterone on a fetus and the findings aren't good. More likely than not the child will be intersexed, first of all, among other abnormalities. Psychologically and physically I can't imagine being on testosterone for 8 years, going off it, and having the hormonal influx of a pregnant woman. This situation brings up so many ethical questions as well. Okay, so now we've proven that a "man" can give birth. But should we do it? As someone said in a group I'm in, will the child have to find out in school that humans aren't like seahorses and it's the female of the species that usually give birth? Does his name go on the birth certificate as the mother, and if so, where does his wive's name go? Here we are, questioning the gender markers of simple words such as mother and father. Because technically this man is the mother, because the mother gives birth in our society and therefore has maternal rights.
I'm giving myself a headache ;P
Okay, so I'm going to play my own devil's advocate. I mentioned before that the years of testosterone probably messed up his reproductive system enough to cause birth defects. In a heterosexual "normal" birth, women encounter possibilities for birth defects all the time, whether she's a smoker, it runs in the family, they found the gene for Downs Syndrome, etc. So am I advocating that these women shouldn't give birth? No. These women also don't identify as men, which is what I struggle with.
I identify as a transman. What does that mean? I was born with a female body and I am taking testosterone to correct my hormones. My brain is wired as male. I present myself as male and live my life as such. Men are not wired to have babies, therefore I consider myself not wired to have babies. I did not harvest any of my eggs before beginning hormone treatment and I don't regret that.
This entire issue is much bigger than "Society says women have babies and men don't," because it's not just society: It's science. It's nature. I'm all for being liberal and to each his own, but I have a hard time wrapping my mind around something that literally flips everything on it's head. I think a lot of transpeople are afraid that this situation will do bad things for the community, and people will think "LOOK! They can procreate now! Now they can make more of themselves and TAKE OVER!!" I'm all for pushing the envelope, but when is it too far? I'd love any opinions on this matter because obviously it's taking up a lot of my brain.
And to Thomas Beatie, Congratulations on your baby. I hope everything works out and she is happy and healthy. I'm sure you will make a great parent.




Wednesday, March 19, 2008

Acne

This is the state of my face from the prednisone. I actually didn't think it was this bad until I took the picture. I have a prescription cream, however like most creams the fine print told me it may not start working for 6 weeks. I can handle the body acne, but the face? C'mon! Damn you, steriods!

Friday, March 14, 2008

I'm such a bad blog updater

Hello and welcome back to As the Tranny Turns! When we last left Sean, he was pumped up on prednisone and wallowing in self pity and loneliness. His mother, the Janet, convinced of his impending death, made herself a nuisance. And now to our show!

The Testosterone Files

I think I mentioned before that my doctor had me discontinue use of testosterone while I was in the hospital. This was done not because the T has anything to do with me being sick, but because testosterone and prednisone are similar structured drugs and he wanted to make sure that we weren't flooding my system. I was off testosterone for about a month and then was able to continue hormone therapy. It's been about a month since continuing and I feel fine. My voice is still a little squeaky from the off/on action.

Facial hair is pouring in. The prednisone has given me HORRIBLE acne which makes me petrified to shave. I'm not quite a monkey yet, but I'm getting there.

Last weekend I went to Worcester to volunteer at the St. Patricks Day Parade with my mother. She's on the committee and I used to help out every year. Then I began my transition, so last year I didn't go. I was nervous because my mother didn't really tell anyone. And she still talks about her "daughter." However, I pass well enough that everyone, whether they had been told her not, saw me and treated me as male. I was also working away from my mother all day which makes it 100% easier. It's her slips and pronouns that tip people off. I had such a good day being myself and helping to run the awards (anyone who has programmed with me in the past, thing battle of the bands judging on crack with old people). Afterwards I told my mom how nice it was when people didn't know and just got to know me for me. She was like, well they knew, and I was like, trust me, if they knew they forgot because they did not know I used to be a girl. I think it's hard for her to imagine someone not knowing because she looks at me and sees a girl. She hates the facial hair - almost as much as she hates my body hair. Last summer she told me she hated hair "even on real men." Thanks mom ;P

The Medical Front

March 4th I had my first round of cyclophosphamide. My mother insisted on taking me. We got lost on the way and were 20 minutes late, but luckily we were going to be there for 6 hours so it didn't really matter. Basically I sit for 6 hours and get a low dose of chemotherapy to treat the lupus. I also get flushed with a LOT of saline fluid and receive a medication that shields the kidney from damage from the chemo. This medication has to be given 4 hours apart, which is why I am there for so long. The day wasn't as long as I had anticipated, although I had taken my adderall and did puzzles all day. They have volunteers that used to be patients there and they come by with drinks, snacks, and lunch. My mother makes a big deal about me getting chemo but i really don't see it as a big deal. I don't even get any side effects from it, except extreme fatigue the next day. My rheumotologist came up so I could sign the consent form and he seems to think that I won't even need the full 6 months of treatment. My levels are looking good and the kidney function has gone up. My next chemo is April 1st, which my mother is attending, After that I told her that I'm doing it by myself. Honestly I don't mind people coming with me. Just not here. She puts additional stress on me and I need to learn to say no to her. I'm not twelve anymore and I don't think she understands that. I get that I'm her kid and that this is a scary time for her, but if her being crazy Janet is impacting my recovery, she's not helping. I was lucky enough to get all three of my next doctor appointments on the same day, which I mentioned to her in passing. I got a text from her saying that she could go with me if I wanted. I told her that, No, I'm good. Haven't heard from her since ;P I'm trying to let her be as involved as I can without driving me crazy.

Other happenings

I'm become best friends with the Pollard Memorial Library of Lowell. I went yesterday and read the entire recent issue of Time. I've discovered audio books. When I was in Boston last week I listened to The Pearl by John Steinbeck. By the end of the day just by listening to my ipod I had read an entire book. Next I'm going to see how Stephen King's The Colorado Kid translates into audio. I've been reading a lot of different books including poetry. I've also been writing in my paper and pen journal, which I take with me everywhere. It has it's own spot in my backpack. I write anything and everything.

I'm addicted to Subway. There is a Subway right near the library. They have daily sandwich specials, a value meal with chips and a drink for $3.99. I have the sandwiches of the day memorized. I usually hang out in Subway for an hour when I go, eating and writing, writing and eating. Mostly writing because the 6 inch sub doesn't last long.

I found lately that I have to be careful with how much energy I'm using. Usually when I get back from the library I'm exhausted. This Wednesday I forced myself to stay in the house and do nothing. I was miserable all day because I was bored. And when I'm bored I tend to eat everything in the house from the prednisone. I think I need to work out some sort of a schedule for myself. I'm thinking of working in some concrete writing time that will force me to write, or at least sketch out something to write.

Until next time, thank you for watching As the Tranny Turns!

Saturday, March 8, 2008

This sounds about right

You paid attention during 51% of high school!

51-67% You are smart enough to be ashamed of still scoring so low; remember that there are books in the world, full of information? Yes, books are our friends.

Do you deserve your high school diploma?
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Friday, February 29, 2008

Oxycodone and Cyclophosphamide

I started writing again. Nothing impressive, just some character development and a little storyline. Last week I wrote a little bit in McDonalds, which was actually a great place to write. My hand has been cramping up from my bad joints so unfortunately I had to stop. I also started a sort of journal, mostly of doctors appointments and train rides.
My back has been bothering me so everyonce in awhile I pop an oxycodone at night. As I did tonight. The only problem with this is that I become a little loopy yet really clear-headed. And my back stops hurting.
Had an appointment with the kidney doctor yesterday. Lab work shows the damage to my kidneys is being repaired. He told me that the doctors understand that the next 6 months are going to suck for me because of all the medication and I'm going to feel pretty bad most of time. He's hoping after the initial 6 months they can go easier on me, but from what he said I'm going to be on treatment for quite some time.
It's time for my second treatment of cyclophosphamide, which is an IV chemo that is used to treat cancer and autoimmune diseases. My appointment is tuesday at 10 and my mother is coming with me. Yes, Janet is coming to the doctor. That should be a children's book. She really wants to come. The last time I saw her she was convinced I was dying, so I figure it could be good for both of us. First of all, I save money because she's driving in and secondly I don't have to go to the first appointment by myself. I'll be receiving the treatment for 6 hours. But I get a bag lunch. Woo! ;P
Today was a really tired day. I did errands in the morning and by 1pm I took a 2 hour nap. I'm still exhausted and will probably go to bed soon. I'm currently reading 3 books. I should finish one soon.

Thats all for now. I'm sure I'm missing something. Next time, then.

Saturday, February 16, 2008

Bloody knees and old men

I've been thinking that it may be therapeutic for me to update my blog more often. I want to start writing again because as many of you know it is damn near impossible for my ADHD brain to put thoughts on paper. And impossible if I wait too long.

Thursday I had a doctor’s appointment with my primary care, Kevin. Off I go early in the day to kill two birds with one stone. 1) I have the original appointment and 2) I have to get my blood work done at Beth Israel anyway. On the way to catch the bus I manage to slide (literally holding onto the railing) down my stairs and, just when I thought I was fine, slipped on the ice at the bottom. Afraid to miss my train, I leave anyway and try to deal with the blood using my glove. Unfortunately I was wearing khakis and my blood is a little bit thinner than normal, so I continued my day with a bloodbath on my left knee. Needless to say nobody messed with me ;)

One of the side effects of the 60mg of prednisone I take daily is that I eat all the time. It's really annoying and something I have to watch out for. However considering I lost 12lbs in one month not many people seem to be too concerned about it. There is a food court right near Beth Israel and I had been daydreaming about a foot long subway sandwich for days. After getting my sandwich, chips, and some root beer and gaping at the ridiculous price (Almost $10! ARE YOU SERIOUS??) I put half the sandwich away for later and ate lunch. Right as I finished I got a phone call.

It's the lady from social security inquiring about my online disability form. I explained to her that I was going to make an appointment, but she said she only works on these claims Tues and Thurs and next week she would be on vacation. Right now it is! I was on the phone with truly and nice woman, probably around my age for one hour and 13 minutes in a food court answering questions from my ENTIRE 10 years of work history to if I hide money under my mattress. The best thing about this is that I should be getting a packet in the mail that I can sign, send back, and get this process rolling. The bad news is that it normally takes 3-4 months for a medical decision to be made and there is a very good chance of getting denied and having to appeal it. Ugh.

After the phone call ends (and my phone starts to die) I realize I have less than an hour to get my blood taken and get to Back Bay (for anyone who knows where Beth Israel is, this is a little bit of a hike.) Oh, and my knee is killing me from the earlier spill. So I power limp to get my blood taken, give my urine, let the tech ooh and sigh at the state of my bruised veins, and power limp back to the T stop. I got to Downtown Station to switch to the orange line at 3:16. My appointment is at 3:20. I called the doctor’s office to let them know I would be late.

I roll into the office 10 minutes late and am told that I have to call my insurance company because I never officially switched my primary care to Kevin. Apparently Network Health just gave me a random doctor in Worcester because I used my mother's address. So I get on the line and I can't hear the woman, then I go on hold. Well of course at that time my doctor is ready. So I hang up.

This was the first time since I was in the hospital that I got to see my doctor so that was nice. He told me that when he first looked at the chest x-ray from before he hoped my body would bounce back from it. This made me think it was altogether way worse than I thought. He seemed pleased with the way my body was functioning, how everything sounded, and the way I was responding to the meds. He also has been doing a lot of research on the effects of T and lupus and can't find any. Apparently him and the coordinator of the Transgender program at Fenway will be working on an entry for the journal and be presenting it at a conference. I think that's awesome. He sees no reason why we can't continue the hormones but I guess the steroids have a similar structure so he just wants to make sure the steroids and T won't kill me ;P He said we waited this long a few more days won't kill me. He's concerned about the emotional and physical withdrawal of the T. I've been off it for about a month now. He also told me to be careful if I start thinking people are following me or if people on TV are talking to me. Like if Howie Mandel offers a million dollars just to me. Prednisone is creepy shit.

After getting my blood taken for the 2nd time in a few hours (he wanted to check my glucose because I was complaining of sugar level issues due to the prednisone and how they were giving me insulin in the hospital) and getting a shot of vitamin B-12 I get back on the phone with the insurance. Apparently my request went through the first time. Sweet.

It's funny thinking of this as a long weekend because now every weekend is long to me. I went to the library last week and got a library card so I could take out books. I've never been in a situation where I literally have nothing to do. This morning I cleaned the bathroom from top to bottom. My cat didn't know there was water in the tub and, as I was washing off the rubber duckies, he wanted to play and jumped in. I don't think he'll make that mistake again. I'm also having trouble, as mentioned before, with eating everything in sight. Another thing that makes this difficult is that I can't tell if it's all from the prednisone or if I'm eating because I'm bored. I think it's a mix.

I'm also very limited by the amount of physical activity I can do. Yesterday in the AM I walked just under half an hour to the grocery store, shopped, and then walked the same distance back with a backpack filled with food. Back in my normal healthy days that wouldn't have fazed me but it completely knocked me out. In bed by 10. I'm going to have to figure out things that I can do that are low energy, or something I can do outside a few times a week.

And then I think about the monthly doses of cyclaphosamine (essentially a low low dose of chemo for my kidneys.) Because the only one I've had I was in the hospital and literally up all night and hallucinating, I don't know how this is going to affect my energy. I'm very concerned about becoming a shut in and depressed. The only think I miss about UPS is the social atmosphere I had on a daily basis. I know I'm not the most social person in the world, but I really want to work on that. Especially now when my day is built around my cat's eating habits.

The New Hampshire Telegraph has been publishing a series called In Transition on the transgender community on the front page of the Sunday paper. I just read the second installment today and I think they are doing a good job. They have been focusing on male - to - female transfolks and even did a story on a therapy group they have. In my experience it is much harder for an mtf to transition both physically and into society. They also posted an article that focused on why some psychiatrists believe that gender identity disorder is a legitimate mental illness and should be treated as one, that is we should be treated mentally and be taught to be comfortable in the bodies we were born in. It also talked about religious persons saying that God specifically said man and woman and to reject the sex God gave you is to reject God. Well, I've come to terms with the fact that there is no way I would ever be comfortable in a female body. If my doctor told me I could never take T again I would be devastated but I would also be grateful for the time I had and try to live my life as a man as normally as possible. It's not like I'd be like, well I gave that one a try, bring on the dresses!

This is a really long post, so I'm going to stop talking now :)


PS - I just looked at the title of the entry and noticed I forgot to mention the old man. When I was walking to the grocery store yesterday I came across an old man stranded behind some ice on the sidewalk. He asked if I could help him and of course I did. I told him to be careful of the ice. He told me thank you and that he hoped I never got old. It made me smile.

Saturday, February 9, 2008

Sitting and... sitting

I've been out of the hospital for a week and my energy level is improving. I quit my job at UPS because of the health concerns posed by this recent diagnosis. On Wednesday I had an appointment with the Rheumatologist, who is the nicest little Asian man. He essentially just went over my diagnosis and made sure nothing new had popped up. It was actually worse than I was aware, being stage 4 kidney involvement aka kidney failure. I've been told that it is all reversible. I also received the pneumonia vaccine and the flu shot (now that I am immunocompromised and all.)
I'm on a type of extremely aggressive treatment for the kidney damage called cyclophosphamide. It's a low dose of chemotherapy that I get once a month for at least the next 6 months intravenously. One week and two weeks after this is also after to get my blood taken and urinalysis. Having gotten this before I was discharged from the hospital, after my appointment I went to get the labs run. Unfortunately I didn't know about the urine and I had to pee really bad so I got rid of it prematurely.
I think the woman who took my blood came over on a Viking ship. She was a big woman with a very thick, almost Nordic accent. She apologized for her broken English but then started cooing at me like a puppy when she saw how bruised my arms were from prior blood work. Having this woman coo "Oh your poor boo boo!" was the highlight of my day. Well, until I asked her what to do if I couldn't produce any urine. She looked confused and slowly tried to tell me how to pee in the cup. I interrupted her and let her know that I was dry. She told me to try anyway or come back another day. So I left with the cup.
I went to see my therapist on Friday. Because of the nature of my illness and all the drs appointments and treatment it has been advised that I can't work. Great. So now I'm all stressed out because I have 0 income and have to go to the social security office to file for disability. Any normal person could file online, however I never changed the name on my social security card so all my information would be invalid. I'm trying not to worry too much about it. I'll just go on Monday, explain my situation, and see what they say.
The hardest part for me right now is not going crazy from boredom. At some point if it looks like the disability thing is going to go through I need to figure out what I'm going to do with my life without having a job. I can only clean the house so much and my myspace profile can't be updated everyday. Its frustrating feeling like my health has tripped me up once again. But at least this time I know I have to listen to my body or it'll get worse.
The high levels of prednisone I'm on make me really hungry. I can eat and a eat and eat and really never get full. But then I can't tell if I'm hungry or I'm eating because I'm bored. Whine whine whine ;P
Oh yes, and because of the treatment consisting of steroids it's been three weeks since my last shot of testosterone. I need to make an appointment with my doctor so we can sit down and figure out what the best course of action is. According to my therapist (who works with my doctor) he said that my diagnosis is really the best we could have asked for, so that's good.
I guess I'll just see what happens and try not to worry too much.

Tuesday, February 5, 2008

Seanie goes to the Hospital

I'm sure many of you are wondering where my glorious blogs of the meaning of life have been. The best way to tell this winding tale is at the beginning.

Friday, January 25th I had been experiencing chest pains making it difficult to sleep on my back and breathe normally. I went into Boston for a therapist appt and to see my T doctor. My therapist noticed something wasn't right so I told her about the chest pain. She was glad I had an appointment with the doctor and hoped I felt better soon. Went to see my T doctor, Kevin, and told him about the pain. He listened to my chest and sent me to get a chest x-ray. This involves waiting for a cab and if you’re lucky, having the cabbie curse bilingually in English and Russian. I get my x-ray (and was able to keep my shirt on this time so no "tight shirt" issues," and head back to north station. Except I'm in the middle of Brookline and have no idea how to get back and it's cold. I hop the green line going inbound assuming there will be a station I cane change over on. Nope. I ride all the way to the end of line, get off, so across the street to CVS to buy a candy bar just so I can get cash back because, of course, I have no money left on my Charlie card. I finally get back to North Station and wait around for the train. My doctor said he'd call me with the results of the x-ray if all was not well, but it was almost 5 so I assumed everything was fine. I finally get home at around 7:30 because of course my bus was late and I felt awful, considering I started my day 12 hours before. However, the worst came later. I woke up in the middle of the night in the most amazing pain I have ever felt. Because I had gotten in so late I didn't have a chance to fill the pain killers my doctor gave me. So here I am, 4:45 am by myself crying (I haven't cried since June) on the phone because I am in so much pain. I can't actually verbalize it here, so you'll just have to imagine it. I finally get as comfortable as I can in a sitting up position and pass out for a few hours.

Saturday, January 26th this day is pretty uneventful. I am still under the impression that my chest pain is temporary and will go away on its own. I take it easy and go to see my mom on Worcester that night. On the way I get a phone call from my doctor. Apparently the lab didn't page him the results of the x-ray and he had just gotten them. He told me not to panic, but he didn't want me to wait the weekend to get checked out. My x-ray showed fluid surrounding my heart and the heart was slightly swollen and my lungs had some fluid in them as well. I asked if I could wait until the morning and he said that was fine. He wasn't me to go to Beth Israel Deaconess in Boston because it's the hospital he would directly with. I went to dinner and waiting for my mom to get home trying not to panic. Luckily I have filled my oxycodone prescription so that takes the edge off my pain, but it doesn't help that I still have to sleep sitting up.

Sunday, January 27th I decide not to tell my mom about the hospital and I leave early in the morning saying that I have to go to work. Nope, no work. Beelined it for the ER. After getting lost on the wrong campus and stuck at a 10 minute ER, I find the ER and they take me right away. I am told that my vital signs are "crummy" and I have the blood pressure of a 70 year old obese man. Hooked up to the IV and heart monitor I go. Bring in the echocardiogram, the chest x-ray, lets throw in a chest CT scan. And don't forget all the blood cultures and urine tests. At some point in all this I realize that I'm staying the hospital. They have figured out at this point that the fluid around my lungs is probably pericarditis. More on that later. I think it sounds like pterodactyl. Probably around 4-5pm (I got there at 9am) they move me up to the cardio floor. I am given lots of drugs to keep me pain free and here begin my stay in room 319. My highlight of this day is that, who know, you can use call phones in the hospital. So I call my mom and see says she'll be there the next day.

Monday January 28th I call my boss to tell him I won't be into work today, nor do I know when I will be. He tells me to get better soon. I have two tests scheduled for today, an ultrasound of the kidneys and another echo. During all of my tests I have been naked in one way or another, but everyone I interacted with was very good about my personal space and addressing me how I wasn't to be addressed. I even joked with some of the nurses about it. Overall the doctors wanted to learn more about my being Trans and what that was like for me. During the ultrasound of my kidneys another technician was around watching. When my technician got to the bladder the other guy was like, Whoa. Where is his prostrate? So he asked me if I had any surgeries, I said my spleen. and he just looked so befuddled. I never told him ;P At some point the I have an entire team of doctors assembled from cardio, rheumatology, and nephrology. The tests confirm that was lupus is back with vengeance. The doctors can't tell if the pericarditis (heart fluid) caused the lupus to flare or visa versa. The pericarditis makes me a hit on the floor because Beth Israel a teaching hospital for Harvard Medical Students and apparently my condition is one in which they read a lot about but might never hear it. The way it was described to me is that the heart makes two distinct sounds, while mine was making those plus a crunchy sound. They let me listen but I didn't hear it. I had at least 20 students listening to my thumpa crunchy thumpa.

Tuesday January 29th Things get a bit blurry here because in the hospital you don't really sleep all that well. Every night there I sweat like a pig and had to completely change my clothes. It got so bad that the nurses would just start leaving a complete bed change for me. I think Tuesday was the day I finally got to shower. That was amazing because I smelled like a dirty monkey. Later in the day I was eating lunch in walks my grandfather and his girlfriend with a pretty plant and a flower balloon. Hey, they tried ;P They were leaving for a cruise on Friday and my grandfather didn't want to go without seeing me. They were around when the doctors came in and let me know they recommended a kidney biopsy to see what was going on. About 4 years ago I had a doctor want to do one and I basically told him to go fuck himself because I wasn't sick. Well, now I'm sick. Let's do it. The biopsy is scheduled for 10am the next day, giving me plenty of time to freak out. My mom called later and said that she would come up after work whether I liked it or not. Who can argue that? ;P I got a lot of phone calls that day. My therapist called because she had just heard from my doctor, my doctor called to let me know he was keeping an eye on the situation, and a guy from work called because everyone was worried. Also on this night they started me on a giant dose of IV prednisone. This major amount of steroids spiked my blood sugar meaning the rest of my time in the hospital had finger pricks and insulin attached ;P

Wednesday January, 30th Biopsy day! Of course I have to fast all morning so I'm jittery and hungry. The day before a woman came in explaining a research study they were doing on lupus. My blood is gold to them because I was showing an active flare and it's rare for them to get. I say sure and sign off on the paperwork. She says she'll be back in the morning for the blood. Morning comes and in order to do the biopsy they need to take blood to make sure that it's not too thin and I won't bleed everywhere. First nurse comes in, can't get the blood. Stick me like 3 different times. Research lady comes in. She can't get it. Now everyone is in an uproar because if they don't get the blood the biopsy will be delayed. Researcher calls over to her friend in another building. One of the nurses calls upstairs. I think at one point someone else tries. Finally the researcher's friend the phlebotomist comes in an, EUREKA! There will be blood. Now I'm being rushed off to the biopsy room. Can I just say thank god for sedation? The biopsy is done with localized anesthetic so I was awake the entire time. It almost felt like I was permanently at the place right before you completely wake up from a nap. The anesthesiologist was amazing and stayed with me the whole time making sure I was fine. After 30 minutes of recovery I was moved back to my room and couldn't move for 6 hours. Luckily I only had to bedpan it once. By Wednesday night I felt fine. My mom came up and brought sandwiches. The entire time I was in the hospital I only yelled at her once and that's because she was interfering with the doctors trying to talk to me and called me she. I got another dose of the IV prednisone and for some reason this one burned for the entire hour. Not pleasant. I get good news. They will probably be sending me home on the next few days.

Thursday, January 31st Of all the places I thought I would be watching the season premiere of Lost, the hospital was on one of them. Thursday as a day was pretty uneventful. I finally came to terms with not going home until Friday. The doctors came in and told me they wanted to start treating my lupus kidney failure. The best way to do this is to use a really small dose of chemotherapy (like, less than 20x that of normal chemo) IV once a month. This obviously turns into a pain in the ass because the chemo people have to come in and I had to have 4 hours of IV fluid before it and then I had to be hooked up to the chemo and then 3,6,and 9 hours later I had to get some other stuff pumped in. Looking up at the IV thing and seeing all those bags is not fun. The best part of all this is that we still have to do the prednisone IV as well. And I'm only hooked up to one port. I think I was put the IV at like 7pm. The entire process was done at about 10am. Needless to say I didn't get much sleep.

Friday, February 1st Congratulations! You have made it to the end of my sordid tale. I'm sure I've left some things out and I'm positive my memory isn't the greatest. But here you are. Friday afternoon around 2pm they finally let me go home. I slept almost the entire way and woke up to go to CVS and fill my six prescriptions. Even now after typing I'm really exhausted. I'm sure it will take some time to get back to "normal." I quit my job because it's not worth letting my health get this bad to realize I need to change some things. I know things will be rough for awhile but I need to concentrate on getting better.