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!!

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.

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.

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.