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.

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.

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.

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.

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? ;)

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

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!!