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.

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.

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.

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.

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.

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!