Today I went to Saints for a 7:30am bone density test. It was my first time outside since I came home from the hospital. I made it down the 31 stairs flawlessly. Getting into the car was a little rough because I'm used to sitting down, slowly rotating, going down on my elbow, etc. The way the seat in a car is situated made it difficult. While looking for where I needed to be we just happened to run into the fantastic nurse I had in the hospital. She was happy to see me and made sure I wasn't going back in the hospital. When I said no, she asked why I was there then. In which I told her that I was there to go to the 7:30am appointment she booked for me. She laughed.
The bone density test didn't take long at all. I was out in about 20 minutes. I got home also in one piece. Going up the stairs was easier than I anticipated. The one thing I noticed is sitting up is a little uncomfortable and I don't think I can do it for long. It was nice just to get dressed and move around a little. I'm pretty tired now. I almost dozed off, but my phone woke me up ;P
A nurse from the hospital called and said the Dr. from the hospital was calling in a prescription for me and she wanted me to have her number so I could call her. I called and left a message. She just called me back. Now I assumed that something was up with the bone density test so they were giving me meds for that. Apparently my EEG results came back abnormal. That's right. This kid is going on seizure medication.
SERIOUSLY?!
Let's hope nothing ever happens around my mother because she doesn't know I had a seizure in the first place.
My medical problems are really starting to stack up here! And I can't help but think, if this doesn't help me get disability, nothing will.
My mother came by yesterday to bring me a bunch of stuff like food and the rolling stone magazine with Adam Lambert on the cover. (Sidenote: I think he is man candy for every gender and sexual orientation. Me - oW! Too bad I only saw the AI finale ;P) Me and the lady are going to Disney World in August. We were (well mostly her, I was still gung ho in the hospital) nervous that I wouldn't be able to make the trip. I was going to get a wheelchair anyway because of the lupus, but we were only going to rent them in the park. Now we are getting a wheelchair delivered from a local retailer to our hotel so I can have it for the week. I told my mother this and she insisted on paying for it. This is exciting because it frees up a little of the money I had saved for that purpose. (Don't worry, I have money for my refillable resort drink bottle. I think that was first on the list ;P)
ARG! I'm so MAD about the seizure activity! Well, space mountain isn't open anyway, not that we're chancing me on any ride that could shake me and my spine. I'm hoping to ride Soarin', Splash Mountain, and the Kali River Rapids. The rides completely out: Dinosaur, Tower of Terror, Big Thunder Mountain Railroad, Expedition Everest, Rockin' Rollercoaster...
BUT
On Buzzlightyear's Space Ranger Spin I can ride in my wheelchair. This makes me happy. We've ordered a very highly recommended book for Disneyworld with mobility issues, so I'm looking forward to learning more. The last time I went to Disney I was 8 years old, I read somewhere that the average adult in a wheelchair is at the height of an 8 or 9 year old. It's like going through the same vantage point TWICE! ;P
If you can't tell, I'm really excited about disney. Even in my wheelchair and with my carry one of millions of pill bottles. I like being optimistic. It looks good on me and it makes people smile. And it makes me smile too.
Speaking of, if you haven't read Always Looking Up by Michael J. Fox, I suggest you do. I started reading it pre-seizure and finished it post. The man is officially my hero. The way he handles his life and disease is truly inspiring.
Wow, this post is longer than I intended. ;P Be well!
Tuesday, June 30, 2009
Thursday, June 25, 2009
My mother is NOT happy with me
I finally called my mother and told her about my back. She was REALLY mad that I waited to tell her. I confess that I didn't even tell her the whole story. I told her that I fractured a vertebrae in my spine and went to the hospital for x-rays and other tests. All true. The problem with my mother is that she uses the my sick kid excuse to make people feel bad for her. I didn't want her coming up to the hospital because it would have stressed me out and I couldn't exactly handle anything else at the time. Her and the lady friend do not get along at all because my mother thinks I am being controlled. The reality of the situation is my mother doesn't understand that she is mentally ill. Any decisions I make are for what's best for me. I made the decision not to tell her until I was home. And I made the decision to minimize the situation not to shield her, but to make it a little easier for myself. My mother is an extremely selfish person who love me very much. She's childish, manipulitive, and the only parent I have. I love her unconditionally but I do have conditions to which I deal with her: On. My. Own. Terms.
I'm sorry if this sounds harsh. I was just on the phone with her for 2 hours. For the first 15 minutes she yelled at me, called the lady friend controlling, manipulative, and many other things that she is not. She dares to blame someone else for decisions I make. I told her that it was my decision not to tell her until "I knew more information." Like how I was going to deal with her. Do not blame someone else for something I did. She did apologize for yelling at me, but only because she thought I was in the hospital overnight for days and didn't tell her. Well, I was. And I didn't. And you know what, that doesn't make me a bad child. If anything you could say that I'm protecting her. Maybe I'm afraid she'll get sick again and be put back into the hospital.
No. I'm protecting myself. I knew I couldn't deal with her in the hospital. If anything I would have gotten sicker. And if I told her exactly how I felt, she would blame the lady friend. And it doesn't matter who you are or how you are connected to me. You could be Saint Anthony or Jesus Christ and my mother would blame you if I didn't do something or act in a way her sick mind thinks it should be.
My mother is clinically mentally ill. She likes to joke around about it. What she doesn't realize is that as she ages it's getting worse. She cycles through friends and will eventually find a reason to hate them. She dates men that are literally dregs of society and more mentally ill than her. A lot of her friends are also mentally ill. I always feel bad for the "normal" people she hangs around with because eventually she will fuck them over.
*sigh* But, for the next hour and forty five minutes she talked about her garden, her friends, her part time job, people I don't know, and finally I helped her log into her "professional" email address. You know, the one I made for her after I made her a resume so she could try to get a job. She's sending me the Rolling Stone magazine. Good. I wanted to read it.
Next time: It seems Friday before the seizure was completely erased from my memory. It was told to me and I was shocked.
I'm sorry if this sounds harsh. I was just on the phone with her for 2 hours. For the first 15 minutes she yelled at me, called the lady friend controlling, manipulative, and many other things that she is not. She dares to blame someone else for decisions I make. I told her that it was my decision not to tell her until "I knew more information." Like how I was going to deal with her. Do not blame someone else for something I did. She did apologize for yelling at me, but only because she thought I was in the hospital overnight for days and didn't tell her. Well, I was. And I didn't. And you know what, that doesn't make me a bad child. If anything you could say that I'm protecting her. Maybe I'm afraid she'll get sick again and be put back into the hospital.
No. I'm protecting myself. I knew I couldn't deal with her in the hospital. If anything I would have gotten sicker. And if I told her exactly how I felt, she would blame the lady friend. And it doesn't matter who you are or how you are connected to me. You could be Saint Anthony or Jesus Christ and my mother would blame you if I didn't do something or act in a way her sick mind thinks it should be.
My mother is clinically mentally ill. She likes to joke around about it. What she doesn't realize is that as she ages it's getting worse. She cycles through friends and will eventually find a reason to hate them. She dates men that are literally dregs of society and more mentally ill than her. A lot of her friends are also mentally ill. I always feel bad for the "normal" people she hangs around with because eventually she will fuck them over.
*sigh* But, for the next hour and forty five minutes she talked about her garden, her friends, her part time job, people I don't know, and finally I helped her log into her "professional" email address. You know, the one I made for her after I made her a resume so she could try to get a job. She's sending me the Rolling Stone magazine. Good. I wanted to read it.
Next time: It seems Friday before the seizure was completely erased from my memory. It was told to me and I was shocked.
Wednesday, June 24, 2009
Jesus Christo!!
Hi everyone! I know it's been quite a while, but do I have a story for you! Last Thursday my mom came up to see me and we went to Hampton for the day. The weather was shitty but we got out Sabo's sandwiches and watched the builders building the bases of the giant sand sculptures. We had a good day, which makes it easier for me. You see, my mother has not yet been told about my recent medical mishap.
Friday I woke up not feeling well. My back was sore and it took me way too much time and effort to get out of bed. I called my lady friend and left her a pathetic voicemail asking if there was anyway she could come home early. For any of you who know me well, you know that I NEVER ask that of anyone. I can usually take care of myself. So obviously she came home as soon as she could get away. She made me some toast and I stayed in bed the whole time. At some point I got really hot and ripped all my clothes off.
******
The next thing I remember she is screaming in this panicked voice I'd never heard before, the room is filled with EMTs, and I'm mumbling that I'm naked. Apparently I had a seizure. She was in the net room and came in when I started making weird noises. Then I was jerking around at the waist, staring off into space and not responding to her. She called 911 when I started foaming at the mouth and bleeding, because I bit my tongue while thrashing.
The EMTs start asking me questions like what day is it, do you know where you are, what is your name, all of which I have no idea. Luckily I quickly snapped out of it (and got some clothes on) and they gave me some oxygen and hooked me up to the stretcher. I got brought down 3 flights of stairs on the stretcher barely noticing what is going on. By the time I was in the ambulence I was more alert and sent them to Saints. I've never been to Lowell General and we'll keep it that way.
I get to the emergency room complaining of back pain, so they send me for x-rays and other tests to try and get to the root of the problem. A long story short, they find a fractured bone in my spine but no cause of the seizure. The doctor admits me into the hospital which has a nice big tv is a single. Which is great, because for the first 24 hours I can't leave my bed. I've never said "bed pan" so many times in my life.
The "funniest" part about this entire thing is the difference between doctors in Lowell and doctors in Boston. When I was at Beth Israel last time, I had no problem with being transgendered. They knew what was up and treated it correctly. This time, oh lord. I really had to explain it to every single person I talked to in the ER. My favorite was when thiis doctor kept asking me these questions, and finally he was like, "So you have a vagina?" "YES!!!!!" Really, I think I screamed it. Look, I know that it's not common. Obviously more places than others. But I like to think that medical professionals should have some sort of training so when they encounter a poor boy in the ER whose parts just happen to be a little different, it isn't such a big deal.
One night, I think it was Saturday, I (finally able to go to the bathroom on my own) got out of bed and couldn't reach to unplug my IV to take with me. And because I was out of bed I couldn't reach my call button. So I'm standing, slightly hunched over because I fractured my back, fighting back constant muscle spasm, moaning in pain. Luckily it was at night so it was quiet and someone heard me. I think at some point I would have cried out for help.
I was sprung free on Monday really without any answers. But they did send me home with a nice pad for my bed (think college dorm foam) and a back brace formed to my body. Oh, and pain killers. The ortho told me it takes a month for it to heal, so I'm hoping things start looking up. It's strange when someone else starts doing the things that you used to do, but now cant. Even the cats are confused. So far the things I can do are: use the bathroom, brush my teeth, sleep, eat, drink, use the computer, read, and watch tv.
Things I can do assisted: Get dressed, take a shower
I can't: feed the cats, do the dishes, vacuum, bend over, walk very well, pick up anything heavier than a cup, stairs without a railing
I really think I'm going to need a cane when I can start walking again for a little bit ;P So that's the basic story!
Friday I woke up not feeling well. My back was sore and it took me way too much time and effort to get out of bed. I called my lady friend and left her a pathetic voicemail asking if there was anyway she could come home early. For any of you who know me well, you know that I NEVER ask that of anyone. I can usually take care of myself. So obviously she came home as soon as she could get away. She made me some toast and I stayed in bed the whole time. At some point I got really hot and ripped all my clothes off.
******
The next thing I remember she is screaming in this panicked voice I'd never heard before, the room is filled with EMTs, and I'm mumbling that I'm naked. Apparently I had a seizure. She was in the net room and came in when I started making weird noises. Then I was jerking around at the waist, staring off into space and not responding to her. She called 911 when I started foaming at the mouth and bleeding, because I bit my tongue while thrashing.
The EMTs start asking me questions like what day is it, do you know where you are, what is your name, all of which I have no idea. Luckily I quickly snapped out of it (and got some clothes on) and they gave me some oxygen and hooked me up to the stretcher. I got brought down 3 flights of stairs on the stretcher barely noticing what is going on. By the time I was in the ambulence I was more alert and sent them to Saints. I've never been to Lowell General and we'll keep it that way.
I get to the emergency room complaining of back pain, so they send me for x-rays and other tests to try and get to the root of the problem. A long story short, they find a fractured bone in my spine but no cause of the seizure. The doctor admits me into the hospital which has a nice big tv is a single. Which is great, because for the first 24 hours I can't leave my bed. I've never said "bed pan" so many times in my life.
The "funniest" part about this entire thing is the difference between doctors in Lowell and doctors in Boston. When I was at Beth Israel last time, I had no problem with being transgendered. They knew what was up and treated it correctly. This time, oh lord. I really had to explain it to every single person I talked to in the ER. My favorite was when thiis doctor kept asking me these questions, and finally he was like, "So you have a vagina?" "YES!!!!!" Really, I think I screamed it. Look, I know that it's not common. Obviously more places than others. But I like to think that medical professionals should have some sort of training so when they encounter a poor boy in the ER whose parts just happen to be a little different, it isn't such a big deal.
One night, I think it was Saturday, I (finally able to go to the bathroom on my own) got out of bed and couldn't reach to unplug my IV to take with me. And because I was out of bed I couldn't reach my call button. So I'm standing, slightly hunched over because I fractured my back, fighting back constant muscle spasm, moaning in pain. Luckily it was at night so it was quiet and someone heard me. I think at some point I would have cried out for help.
I was sprung free on Monday really without any answers. But they did send me home with a nice pad for my bed (think college dorm foam) and a back brace formed to my body. Oh, and pain killers. The ortho told me it takes a month for it to heal, so I'm hoping things start looking up. It's strange when someone else starts doing the things that you used to do, but now cant. Even the cats are confused. So far the things I can do are: use the bathroom, brush my teeth, sleep, eat, drink, use the computer, read, and watch tv.
Things I can do assisted: Get dressed, take a shower
I can't: feed the cats, do the dishes, vacuum, bend over, walk very well, pick up anything heavier than a cup, stairs without a railing
I really think I'm going to need a cane when I can start walking again for a little bit ;P So that's the basic story!
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