one in a million...

that rare chance that something happens is often something that people wish would happen in their lives, like stumbling upon someone famous you've wanted to meet your whole life, or winning a prize, or even those simple days when everything goes your way. What about those one in a million chances that no one wants? I often wonder why I had to be part of that one in a million who had to get such a rare and terrible disease, but then I realize something better has to come. Maybe I'll be part of the one in a million who is in that perfect place in time where they find a cure.? I'm still waiting for the good to come...

Kindness counts, im serious...

I can't understand why other people get joy from making that one person at the party the butt of the jokes. It's as if the night is not complete until something demeaning and condescending is said about someone. I'm not saying I've never partaken, but I realize now that it will never happen again. All we need is kindness and understanding. I wish we could all just live and not worry.

IEP

This morning was crazy but turned out fine. First of all I woke up at 7:50am and Clarence was supposed to leave at 7:55. Ryan rang the doorbell right then and Clarence was still in his pjs. #1 I'm already weak as it is and #2 our house is being painted, so our doors are super hard to open with all the paper in the doorway. So I had to think in a split second I would just take him. He can't cross the street so I put on jeans and he did too and we were out the door. I already have such a hard time walking and on top of that the stress was making me feel so sick. Suddenly my neighbor Jean was driving by and offered to drive us. I stumbled but she helped me in the car. We made it barely but we did. It's times like this I know someone is there for me. Just as things get to difficult someone reaches out a hand.


I went to Clarences IEP instead of my mom since the painters were still there. Honestly seeing that and being there put me back to what I originally wanted to do. I still want to become a special education teacher so badly, and part of me thinks I just just fuck the rest and do it. Should I? Well this is life...

Oh Dear...

I just want to skip all this young crap and enjoy growing old. I am at that age where people party and drink, and hate waking up early and are so judgmental and superficial. I understand that I don't have to do those things, and for the most part I don't. I just mean that I hate that it exists and I can't be apart of it because of "health issues". I just want someone to grow old with and be in love with. Have some kids and a dog. I want to live an adult life already. Maybe in someways I am already an old person. Watching myself wither away is hard sometimes, but I try to be optimistic.

On another note I feel you should do whatever makes you happy as long as you have the means and no one is getting hurt. Who the hell cares if what you like and care about is shallow? I do what I need to to stay happy, and retail therapy is it for me for now...

Today

I woke up at 7am to help get Clarence ready in the morning and make him breakfast and a snack for the day. After he left I went back to bed till 10:30am. I took a shower, got dressed and ate some apple jacks. I payed my student loans and a credit card bill and then ate some lunch. Later I called my counselor Cathy at the Cal Dept of Rehab to discuss my case. She is trying to get me into this job training testing program in July. Later I'm going to go shopping and go to sleep. What a boring day...

I think this is the point

I realize now that I need to make some changes in my life. Today I was in Toronto took the bus and subway and was literally almost unable to walk. I could see all the people walking and talking without a thought, but here I was, every step I took was leaving me in agonizing pain. I just kept feeling sad almost wanting to cry, but I put a smile on for my family. All I answered when they asked "are you ok?" Was "I'm fine." Honestly I was dying both physically and emotionally. I think I really need to start using a walker. Will my friends accept me? They probably will stop inviting me cuz it won't fit in their cars. Or they don't want to be seen with me. I'm scared...

it's funny

I'm really trying to be happy, but I'm having a hard time. Even enjoying myself on this vacation is hard. I feel like I can't enjoy the good moments because I'm so scared of them going away. Like I'm wondering when he last time I'm going to get to wash dishes or put on makeup, or make my bed. It's like each one of those things reminds me. I'm just scared I guess. I hope this doesn't mean I'm falling down again.

yesterday

it's hard to see what I did yesterday, but I was happy that I was able to be there. Everyone was apologizing to me for how uncomfortable I must have been but I chose to go. It was sad and amazing to see someone slowly losing their mind. I'm not saying I was glad to see that I'm just glad I got to be there for her. It's sad to see two people living and breathing in a place who were once connected act like complete strangers to eachother. I don't make sense again.

Physical Therapy...

Today I went to my first session of physical therapy, and I have to say I realize I'm capable of things I don't even try on a regular basis. As simple as this is it made me happy. My therapist asked me if I could stand still for two min without falling over. I was very quick to ay no. He told me lets see, and I did it. I really had this idea that I couldn't. I did get a little sad realizing my inadequacies as well. I don't know today was just ehh...

I haven't told anyone yet, well of course I've told Roxy, but I'm seriously thinking about gradschool. I talked to Roxy last night about moving in with her and she thought it was a great idea. Then she asked me what I thought about going to grad school. She is waiting to hear from Cal Poly. I used to know for sure I was going, but after my depression I said that I know that healthwise I'm most able to work now and I know after school that may not be the case. But then I thought about how I am living for now and not later and I decided going back to school is what I really want. I don't know, just a thought...

I know...

I miss being that person, that regardless of my health problems I lived my life better than most people do. I want to be her again. I remember how good it felt to be that and I just want to go back.

Lately

I am to this point in my life where I am not constantly down. I understand again how life works. I thought I was never going to get out from under. Like I was too far down. I hope this lasts for a while. as weird as this sounds, I feel like because all this is happening to me I deserve some redemption. The fact that I haven't found a job yet, and I'll be honest I haven't been looking. I feel like I've accepted the fact that the economy sucks, so I've stopped trying. I also feel like I deserve for something to be easy and I feel like it is this. I know I need to make it happen for myself, and that is the person I once was. Its just so scary and daunting, to realize this is really life, and it sucks for me. I only get depressed when I start looking for a job, so I feel I may go down again.

I'm leaving again, I feel if I don't go for at least a month, my opportunity is wasted. I just don't care. I want it all to go away for a while. I want to be in another place, with different people. I feel I don't have friends here. If I could I would leave an never come back. I just want something different, something better.

I can't understand

In this world as much as you do the right things, you act the right way, you never get what you want. Doees that mean I need to continue on being a jerk? I'm confused.

Product Review...

Have you ever tried to love something so much that just doesn't work for you and pretty much ruins things for you in the end? That's what I did for the past few days. I invested in something in more ways than one, and I just really wanted to love it. I even justified it's presence and tried many different things hoping I would feel differently. In the end it just wasn't right for me and I regret even putting that time and effort in.

It's funny because this sounds like a lot of the things we go through with people and relationships but it is not that at all. I'm describing a situation with a material thing I bought that didn't work for me.

why

I always do this and it just ends up making me feel worse. I want people to invite me out but I am not comfortable with most social situations so I don't end up going. Then I realize how much fun I have missed out on and I start feeling miserble. A part of me wants to just do as much as I can while I'm physically able, but it's just getting too hard. I realize it's right to take what you can get, but somethings I just don't like doing. Ideally I want to only be part of social situations I'm comfortable with. I guess I lose either way. On the brightside maybe some disneyland tonight...

getting started

I want to finally get started with the job searching again, but I'm just scared of rejection again. I remember the last time, being so nervous. And of course like with everything else there is an awkward moment where the people who are hiring see that I have a problem but don't know for sure. I have to be the one to break the ice. I felt it didn't go well last time and I can't help but thin I didn't get the job because I am disabled. I know they can't discriminate but I can feel this is why I never get the job. In stressful situations my medical conditions hinder me even more, so I appear more nervous, my handwriting is even sloppier and harder to do. I am a walking disaster. I'm just dreading to start over.

Let Down...

When you do things for yourself, the time for other people is jeopardized. Why can't everything ever just be perfect?

Ii'm a little upset...

that everything I did today went to wase...

4 already done 1 to go

I look at your face, I see pictures of you and I cringe, I think I hate you even more now...

R

Brit 40
Mom 204

Too much life...

The Office just made a reference to How I Met Your Mother. My life is all better because my two favorite shows are now mated for life. Ahhhhh I am so excited, the litle things in life.

My heart hurts in more ways than one...

I feel like Sunday was such a missed opportunity. It's weird I can't believe I feel this much hurt over seeing my friends, you would thin I'd feel this way over a relationship. I was supposed to go to LA this sunday, and I was looking forward to it all week. I even cancelled an invitation with Kat to go out on Sunday. A week earlier I emailed Roxy about going to New York over Spring Break. So this weekend she told the peiple I was suppised to go with that I was not in town, so they didn't even bother to call me. What makes me angry is that no one ever asked me. Spring Break is not till two weeks from now. They should know that considering we were college stludents, one of them is even still at UCI.

I guess I get this way when I miss really great opportunities because I don't want to let go of the time I have left. Seeing these people is always so great and it's rare and I feel I never have to explain myself. I need to remember that these sitations will come agai, even though I feel they won"t. In a way it's kinda my fault. I mean to text her I was just lazy. This is what it cost. If I didn't go maybe there is a reason. I know I said this was a cop out. If it wasn't meant to be I want to know why?

On the other hand last night I ate really great food, but I feel guilty and sick because of it. I woke up this morning at 3am feeling like my heart was coming out of my chest. I almost immediately knew it was from all the cholesterol I ate last night.

I'm dreading tomorrow. I guess I wanted one good day to help me feel better about what I have to do. I have to schedule all my therapy tomorrow. I just don't want all the stress of finding someone to drive me. Again doing all this stuff with the doctor keeps me from the world. When I'm at the doctor I'm busy, just not the kind I want to be.

I"m just physically and emotionally hurt...

I want to remember this moment...

my glasses fell off while I was typing my last blog, and I just kept them on the floor. it's easier for me to see the computer screen without them on, so I kept them off. Suddenly I look to my left out the window because I notice something moving. There is a blurry figure walking around. It waved at me but since I didn't have my glasses on I couldn't see who it was. I was so scared at first thinking "ahh a tiny ghost child is walking around.." Tomorrow I bet you someone's gonna tell me it was my six year old neighbor Andrew getting his ball, that went over our fence.

I freak out for no reason at all...

religion, god, faith all of the above...

This is where I am lately...
I recently started going back to church on Sundays, sometimes with my cousin, sometimes by myself, but now I know I go for me, everyone I go there with is only my way of getting there, not my reason. I love learning and hearing people's words, so going to church is something I enjoy. The one thing I love about the Catholic religion is that no matter where you are in the world you can understand the words they are saying. Mass is the same no matter where you go. I've been to mass in Italy, the Phillippines, the U.S. and Canada. No matter where I've gone it has always been said in the same order, with the sane scriptures. I like that sense of security. I like the tradition of it all.

I realized today while I was sitting at mass that I never have thought of Jesus. When I pray it's always to God. I don't memorize prayers, I just talk, and I ask, and I write, and I read. I've been taught that there was a time when Jesus lived among us and walked around as man. But that is the thing about it all, I want something to believe was there, that is better than me, not just like me. It probably helps a lot of people to view Jesus in that way, but I just don't. I think that is why I've never considered him.

Everything has rules. Otherwise running something would just be difficult with chaos. For me religion is a guide, not a be all and end all. I'm Catholic, but I am pro-choice when it comes to abortion, and I'm for doing whatever makes you happy therefore marry whoever you want, man or woman. I certainly deserve the right to love a man, and I would hate it if someone told me I couldn't love someone. It contradicts some of our most basic rights, and that I do not agree with it. I don't think that should make me less of a Catholic. How can I be immoral for wanting happiness for everyone?

If I'm angry with God, he must exist. Otherwise I'd be angry at nothing. It would be such a cop out to be angry and then act like he is not there, because I just don't want to believe in him, and yes I do think God is a man, I feel that. When a blind person is asked how they know something if they can't see, it's because they feel it. I feel this. I can't just believe in him when things are good, bad happens too. I understand that people say that everything happens for a reason, but then why did this happen to me? My life has not been extraoordinarily different. I was a good person who did what was generally right. I'm angry because I know that God puts you on a path, but mine is so horrible. It's funny people are always religious and thanking the Lord for the path he is putting them on, but when the path sucks and it's not what is expected people get angry with God. I am angry becuase I see no logical explanation for what is going on in my life. If it is happening for a reason, what is the reason? I think that whoe reason thing is a cop out because there is no real answer. People say I got this disease because I need to learn how to deal with this and overcome, and I'll become better because of it. But honestly why did anything need to change? I was already living right, being kind, helping others. I mean I spent so much of my life devoted to UNICEF and helping the environment. Am I being punished for not going to church every Sunday, and being a member of religious groups, for not actively spreading the word and converting people. I think helping people is more important than all of those things. Its funny how just doing volunteer work and heping others doesn't make you religious, going to church does. I used to say I helped people, because it's God's will, that I was doing all of these things despite my disability but now I realize I only did those things before because healthwise it was possible and I wanted to. I don't do volunteer work now because I am not physically able but I still want to, not because I'm not religious.

I agree that some people need religion to get them back on track, but I thought I was already there. It has helped a lot of people, and I'm happy for them, but I thought I could do it on my own. It's like God gave me this hardship so people could tell me its because I've strayed away. Even if I've gone back, I still have this disease.

I'm trying but I'm still angry. I need and want something to believe in. I want this to be the reason that things suck. I want this to be the reason that things get better. I need to know that God would never make it so hard that I'd give up. I need to believe that God has someone out there for me to love and love me, and that will accept and take care of me I just need something becaue there is nothing left.

Right now...

I tweeted this earlier and it's just true. Today was just so physically and emotionally draining. I always wait an uber long time if I want to see my neurologist. She's really difficult to schedule an appointment with, and she is in Irvine, so I feel like I only go to her when I need her to fill in paperwork. That's all my life ever is, trying to prove, on paper that I need changes in my life. After talking to her and asking her so many questions, I feel like my life is about to take a turn in a direction, that I'm not sure I'm ready to go for. But then again I don't feel like anyone is ever ready for anything. There is always something wrong with now, but you just need to rip off the band aid when it comes to making uncomfortable changes.

I never really thought of myself as a person needing physical therapy, but I guess it's better to start now. I fell like I'm admitting defeat. I've been choking and coughing a lot lately, losing control of my eating, so my doctor is sending me to a swallowing therapist. Today I even choked on the protein bar I was eating and at lunch. Sometimes it makes me not want to eat in social situations. I remember I was eating nachos with Synthia and I choked. I did it out of nowhere and felt so humiliated. Next I was referred to a nutritionist. I guess since eating regular food is becoming difficult I need to find what works for me to stay healthy. I was also referred to do some physical therapy since, I can't exercise normally. I have felt my speech slurring more often lately. Because of that I was referred to start going to speech therapy. I feel like every little thing in my body is shutting down. It makes sense though. Dr. Neff is just so intelligent and puts it so I can understand. She was talking to me about how literally every function we do in our everyday lives first passes through the cerebellum. It's where things pass and then they do what they are supposed to do. For me since I am losing brain cells more rapidly in that area, all those everyday functions from swallowing, to talking down to writing are jeopardized. I feel I have to stop and think before I do all of those things, or something will go wrong, I'll choke or ill fall or the words i say could come out jumbled. They used to be automatic.

I am also going to set up a consultation with the Ataxia specialist at UCLA. It's hard when you need answers and the doctors are still learning as well, so they have questions too. Because so little research is done on this, she suggested I write to the journal of movement disorders about my negative health experiences with the antidepressant Selexa. I feel lie just going to a psychiatrist instead of medicating the problem. And the icing on the cake is that with cerebellar disorders like mine depression is more likely. Not just because there is an obvious life change, but chemically serotonin levels are jeopardized.

I know I've thrown around a lot of medical jargon, but I guess this is only for me and not for anyone else. I had all these plans for my life, but I'm afraid I'm gonna have to put them on hold to take care of me. I have so much to process and it's just overwhelming. I don't know how I'm even gonna get there since I don't drive.

And the shoes. I said I would leave it up to fate, and I did. He wasn't working when I went to return the shoe. So no I haven't talked to him since Tuesday. I'm too scared to call, but I really wish I could.

Whoever reads this long bullshit thanks for caring...

the universe reaches out its hand and I just slap it away...

So I called this guy, and I was gonna work my magic and say that he gave me the wrong size on purpose so I had to call him. Of course I couldn't do it. So now the right size is being shipped to me and all I have left is this random shoe. If I keep it I'll just always see it as a missed opportunity. I figure my last chance is to bring it back. Kat and I are going to the mall tomorrow. I'll leave it up to fate. If he's working then I'm gonna do something, but if he isn't there, then it wasn't meant to be. I do this with a lot of my life, because I know everything happens for a reason. I'm scared. What if he does this with everyone, he was just being that way to get me to buy some shoes. If it does work out then I'll have to tell him and hell think i'm trying to commit when i'm just being honest. If I was normal then this wouldn't be an issue. I'm getting an anxiety attack just thinking about what this will be like tomorrow.

That kind of girl...

I met someone today. I know it's weird and random, but I really felt something when I met him. And no I meant nothing dirty by that. I probably only talked to him for 5 minutes and after he gave me his card and asked what I was doing later. I was in a hurry so I had to leave. I figured oh well I let him get away. Today I was looking at my shoes and one of them is the wrong size. Now I have to call him for the right size. I wish I could just be that kind of girl who doesn't care, but I'm just too scared, for him to know who I really am and stop talking to me. We'll see.

I've been thinking...

In the last two years I realized that I've traveled to 6 different countries. I guess every summer I try to go to at least 3, but this summer I have no major plans. I really wanna go out and travel while I still have the abilities to do so. I wonder where I should go from here?

Last Day of IOP...

There were no tears. I understand that it is time for me to leave and I do feel like I put everything on the table and said everything, but I know my problems are not all completely gone. That fear I have is still looming over everything. I think I've taken a lot of good things and have made so many improvements in my life. In just three weeks, I got out of bed, hung out my friends again. Finished my paperwork for the department of rehabilitation, went to an Ataxia support group, planning to start my own support group and fixed my sleep schedule. I understand they are all small in hindsight, but they are huge for me.

Today I laughed alot and people told me how much I helped them with my words, which I haven't felt in a long time. I'm going to miss the reason to get up in the morning and the safety but I understand there is a life to live outised of the comfort zone. It's just daunting and scary, but at least now I know I'm not experiencing it alone.

:)

Lately I've been afraid to look at the last few years of my life mainly because it reminds me of how inadequate I am now, but I decided to just do it and how I felt really surprised me. Instead of feeling sad I felt really good. I realized how much I've really helped people and what I have accomplished in the last few years. I literally devoted almost everyday of my college experience to helping people. Whether it was going to Mexico to orphanages to bring food, or creating events for the foster kids around the area, or even putting on events to increase peace. In the past four years I helped and made changes more than some people do in their lifetimes. So If nothing happens now at least I've felt how good it feels to make some kind of difference. I guess in some way using my psychology degree helped me in helping these children more than any desk job could ever do. Happy for right now!

On the other not so much...

The fears I have I think that I will always carry. I don't know if I can ever accept that I got dealt the shitty hand and was part of the 2 fucking percent that gets Spino Cerebellar Ataxia 7. I'm honestly the most scared of losing my eyesight. retinal degeneration is a symptom that occurs with people who have SCA7 and my cousin is 18 and she is completely blind. I'm scared of living in darkness, when I've seen light. I just don't know who I would even begin to deal with living that way.

To make it worse I'll be immobile. I can't see and If I stumble I could die because my body can barely move. Whose gonna want to marry me this way? The only thing i really have now is that I can still look good on the outside, but what will happen when I can't see and I can't wear makeup or do my hair. I am definitely not going to look good. and of course no one is going to marry me then.

I'm so afraid of ending up alone. I mean its hard to find someone who can realize and settle for someone who one day will not be beautiful, that they can't have sex with, will have to feed and drive them around. How do you even begin to tell someone if they marry you this might happen to the person they love?

These things all scare the shit out of me and I feel like I can't escape it.

On one hand I"m better...

Yesterday when I woke up in the morning, I felt like I had a revelation. I think the weekend was really amazing which kind of changed my mindset.

On Thursday when I went bowling with Synthia. It was literally the first time I had been out with someone other than my family in two months. This whole event was anxiety ridden of course. I literally had an anxiety attack and had to force myself to just fuck it and go. When I go out I actually always plan ahead and put my jacket and shoes on before I'm gonna leave so I don't stress myself out trying to rush out the door which of course makes me appear more uncoordinated, and I really can't take anymore drunk comments. So Synth called me two hours earlier and said if I wanted I could come with her to Bryan's house and leave from there or just pick me up to go bowling. But of course I was already uncomfortable so why not just go. I of course had to rush and my legs were litterally shaking, It's like they stopped working. Finally I sat with the feeling and it stopped before she came. First of all I hate bowling. I used to be ok, but now with the heaviness of the ball mixed with my incoordination, mixed with the slippery floors, and my bad eyesight, it's just a bad combination. I feel nervous when I do it, just the eyes watching and me feeling like I'm about to fall over But you know I went and I didn't bowl just watched, and I had on ok time. I realize I'm not as witty and funny as before, so I felt uncomfortable like no one was talking to me. and of course since I haven't been out I'm out of the loop on everything funny that has happened recently. But when I talked to Synth I felt good. I still don't think we were as we used to be but I guess that will take time. I was so nervous even seeing Kelle that I tripped on my feet and had to hold on to a wall. I felt so embarrassed. I haven't told her yet, so I think she still wonders what is wrong with me. Even as awkward as Thursday was I was still glad I did it.

Friday was fun and relaxing. I went over to Kat's house and ate pizza and watched a movie and held Jackson. her baby. I love how Kat doesn't treat me like I'm broken. She lets me hold her baby and doesn't act like I'm a danger. I feel comfortable with her. I would never drop someones baby so why dod they act like I'm gonna kill their kid? I'm a human being too.

Saturday I still needed at least one day to stay in bed. It was what I needed and I loved being home. I watched Clarence all day while Mom and Dad went to a wedding. Doing things for Clarence is one of the only ways I feel I contribute and use what I went to school for. I deal with him in all aspects because he has autism I tutor him and in the morning I help him get ready for school. He has very strict routines, that he needs to stick to and I understand what he needs. This is what I feel good about, like I have a purpose.

Sunday was the best part of my weekend. Brittanee and Roxy came over to pick me up and we ate and talked for hours. It just felt good. Brittanee said something that really surprised me about my life. I always trust what she has to say because I know she's intelligent and has seen me change as a person especially when I was at UCI. They are honestly the best friends I could have. In the time I was going through all of this they would call me all the time and still invite me out even when I would say no. They were always honest with me when I was being stupid and irrational. Even when they felt they could do nothing and couldn't possibly understand what I'm going though they did something that helped a lot. I just love them and I'm sad that I don't live with them anymore, because those were the best years of my life.

After Brittanee's, Roxy and I went to Aditi's birthday dinner it was only Karan, Angie, Aditi and us but it was still amazing. We laughed and we talked about life now and how much fun we had in the dorms together. I was even honest about how I was and how I have this disease and they were so cool and nice about it. We even have an LA trip planned for this weekend. I'm so excited for that, and guess what? we're going bowling. Everyone fucing loves bowling, and I hate it.

Later when we all left, Roxy and I went to Arroyo Vista to pick up her laptop from Onye. Because I was in AV I called Ladi up and we got to see eachother for a little while. It was amazing. I told her everything that was going on and how I felt alone and she just listened. It turned out to be an awesome night.

When Roxy and I drove home we got stuck in traffic. We had a lot of time to talk about college and love and living together. I miss her so much. Living with other people was the worst, she was the best roommate I ever had. We had such a level of comfortability and mutual respect. I love her.

So I realize for now I'm happy. and I realize I can't change anyone but myself. If I hate what people say and I'm constantly embarreased then I"m living with my foot in the grave, when Im not even dying. As far as the things I can control, which is how I take what other people think of me, I am ok, but the things I can't control I'm still afraid of. Ahhhh life!

This is What I Know...

I don't have everyhting, but at least for today in this moment in time I can still do what I want. I am going to do that. Even if it means working or not working. I will do simple things to make my life good,and I'll only take today, because I don't know about tomorrow. This moment is the only one I can know for sure that I still have my sight, my ability to speak, etc. I'm gonna use it Now. Later doesn't matter. Tomorrow doesn't matter, Now does, so now and Today is what I'm going to deal with.

This weekend I came back to me and it really felt right. initially I was anxiety ridden, now I just say fuck the rest and just do it and honestly I feel like I"m coming back to myself. If I don't do that I think too much and make excuses not to go.

Today in therapy I cared how my appearance was for once and people actually noticed. It really was a symbol, I realize that at least for now I can care about my appearance because it still exists. When it doesn't then I'm going to go back to the days when I still could but I didn't and I'll be so sad and distraught. This is all I have and it feels right.

Sleep...

You know I go to bed every night so excited to dream. I'm literally excited to find out what I am going to go through. I always have amazing situations. I can't even have nightmares anymore. I have this ability to wake myself up if it is too scary and I know it isn't real. It's as if in the dream world I have control over what I don't want to experience. I wish real life was that way. I think thats why I love to sleep so much, because it's always about a life that is so unlike the real one. The situations are so complex and ideal. I want to escape there, especially because my real life is so shitty. Sometimes I feel like my dreams are real and this is just a bad dream. Those hypothetical questions people ask are my life. Like people ask sometimes what would you do if one day you just lost your sight. The funny thing is I don't have to imagine because that will happen. And it's so scary to not have to answer that hypothetically speaking, but for real. And the truth is I don't know and I'm scared to death. Please let me dream away this crap tonight.

decisions

I paid 15 dollars to say no today...

Is it only every other night...

that I can sleep? someone call me right now 3:56am I'll be happy (909)525-6931

figures...

I almost forgot it was valentine's day then I woke up to roses all over this goddamn house for everyone else but me,

Would you want to know?

I wonder if I should find out how things are gonna get? If you could find out when you were gonna be in a wheelchair and when you would become blind would you? I could just live my life unknowing and waiting, or I could take the genetic test now to see how far my Ataxia is going to progress. I wish I knew what to do, either way I hate life.

out of myself

You know when you are sitting down and your body isn't moving, but you hear everything and you feel like your body is moving in a direction but you are not controlling it. I feel that way.

Today during IOP I heard this story and it really got to me. here it is: This person had this plan all their life to move to Italy. They learned the language, set up a job there, made arrangements for an apartment. They completely made a life for themselves there and planned on it for years. They get on the plane, fall asleep and when they wake up the stewardess says WELCOME TO HOLLAND. Thats completely how I feel. I planned for this life all along. I had a path set out and all the resources and one day I woke up and I had no choice and I didn't do anything to cause it but things changed completely.

Lately I've been living with one foot in my grave. I mean what is the point? Staying in bed seems a hell of a lot better than the crap I have to deal with having this disease. I'm taking so many steps and I want to get better and this Friday seems lie it could be that for me, but I have all these doubts and hesitations. For one thing my antidepressants I feel are making my balance worse, and on the other end of it Its bowling with people I haven't really been completely honest with about my life. I'd rather avoid the comments and humiliation I probably won't go.

I wonder if my friends have completely checked out. It certainly feels that way. No one calls me to see how I'm doing and I think they're getting sick of having to drive me around.

Clarissa said something that completely makes sense. People say that this disease is progressive. But isn't progress supposed to be positive? I'd rather use the word chronic.

My thoughts are everyshere tonight...

Day 1 IOP

Intensive outpatient program
Today was definitely not what I expected. After Thursday’s two unsuccessful therapy sessions I was ready to give up and try something else that works for me, but then I realized you can’t take one bad experience and make a judgment that that is how it is always going to be. And I got a phonecall saying that I had to call and cancel if couldn’t make it. I couldn’t just not show up and it was Friday and they open on Monday so I really couldn’t call and had to go.

Today was the first time I felt comfortable and that I was able to say exactly what I needed to. No I didn’t make new friends or meet my new boyfriend there but I just liked simply being there. It’s something to wake up for in the morning. I even sat nervously during breaks while they had laughed together. Everyone had been together for a few weeks now and here I was entering their circle where they felt safe. I felt the judging eyes when I got there. I guess you could say the first step is me feeling comfortable telling my story.

January 29, 2010

So today definitely didn’t go as planned. I thought I would go in and talk they would listen. Say the right words and I’d feel a little better. Instead they told me all the words I’ve been told that I know never work. I mean she gave me career advice, and then started talking about other people and how much worse off they are. And when they brought up faith and religion I was about ready to walk away. I paid 30 dollars to hear what I could hear my grandma tell me everytime I see her. And the worst part of it all is that what I’m feeling is what a lot of people go through and its not that serious. Do they need to wait till I do something drastic to see I have a problem? I never knew feeling better took planning. It really sucks that I have to figure out what to say so they’ll stop telling me this crap. And the icing on the already shitty cake I got a voicemail from Roxy and Brit saying that I better not be at a doctor for my depression.

I'd better not...

Where do you get off telling me what to do? Today so many things just didn't work, at least not the way I expected. I guess we all have to start somewhere

Maybe I should just give up...

People have these expectations of me. They say that I am this self motivating, driven individual and despite my disability I am able to over come and live life fully. That was me before. If you saw me now you would notice how negative and sad I've become. Finding a job is impossible if you don't drive. And everyone says i'll figure it out and that life will get better, but can anyone tell me exactly how that is going to happen? They say I can find a job and there are people who are far worse off than me, then show them to me and show me exactly how to do it, because I am so tired of trying and failing. I want an instruction manual on exactly how to do this without a car.

Gummy Bears

I'm in love with them. they're the most beautiful little tiny gems when the light catches them. Texturally they have a bite but bounce back. And they just taste like happy. I love having them around.

Between You and Me...

I hate life right now.

Common Sense

There are some obvious things that occur in life. Common sense should exist to improve life. The lack of it is definitely detrimental to development. If something fails consistently common sense would tell you to try it another way. I don't see how this is not obvious. I know I only make sense to myself and in my head.