Spunky on the outside!

I was thinking today about my visit with the neuro-psychologist.  I was reading posts on http://www.butyoudontlooksick.com and I remembered something that had happened.  You see, I'm 5'10", 130 lbs, and I modeled for four years, so I suppose it would be safe to say I'm pretty? Anyway, during the hour break I got from the grueling testing and thinking (that I was trying to do on 2 hours of sleep, mind you) I went down to the cafeteria for some much needed food. I was having an overall good day, pain wise, but my knees and hips were not really fond of the distance I had walked down the halls and had already protested before the morning began. Walking across half the hospital to eat wasn't helping. So I clung to the rail for dear life while going down the stairs to eat. (I don't even want to think about going back up!) I couldn't find an elevator at first, so I opted for the stairs despite the pain it caused me. While I was standing down there waiting for my food, the cook was chatting with me. Mind you, I'm standing there leaning on the tray counter because I can't stand by myself anymore. He didn't notice this, or my limp. He asked me why I was there, who I was visiting. I said, no, I'm a patient. I'm here for testing, and I'm here alone. He was shocked, and stared at me for a moment and then laughed. I'm not sure if he thought I was teasing him, or being funny... but he said that I was "Too pretty to be sick," and dismissed the idea.

I wasn't aware that to be ill, or sick, you had to be ugly.

I've also had people point out that I'm not in a wheelchair. Gee, thank you for that glorious ovservation... I never would have noticed if you hadn't pointed it out to me. I will try to remember this in the future, thank you so much for enlightening me!  ...Really?

This, to me, is the most ignorant mentality yet. Do people truly not understand that disabilities, like anything else, can range in severity and type? No, I am not wheelchair bound, and no, I am not bedridden. I am disabled, but I am still able to live my life, work, play... just with limitations, stipulations, special care, and shorter times. I cannot go out all night. Hell, I can't even walk down the block without my feet and ankles screaming out in agony. Sometimes I push myself, but when I do I pay for it the next day, or days. My trip to Florida is a good example. I pushed myself because my time there was precious, and limited. I knew that when I got home, I would have time to rest and recuperate. I still ache, my arms are still sore, my legs still tired... but it was worth it. But what people don't understand is just because they see me push myself to be normal does not mean I can do it EVERY day. This is why it is so imperative that I get a job that does not force me to be on my feet. I could never survive that. But just because I CAN work, doesn't mean I can do ANY work, or as much as someone else might be able to do. I also wonder if anyone understands just how difficult it is to find a sit down job when the job market is already so bad, and unemployment at its greatest heights in this country? My work history is terrible.

When I was nine, my cousin and I were hopping the fence to my grandmother's backyard. I remember her purse swinging over the fence as she went over and hitting me in the face. It broke my nose, but I didn't know it at the time. I assumed that since it wasn't bleeding, I was fine. I was just a kid, afterall. Over the years following, I would get sick all the time. Every month, sometimes. We blamed it on allergies, and I tried all sorts of medications to prevent allergies, but nothing really worked. I perpetually had a sinus infection, which would turn in to an upper respiratory infection, and if not treated, bronchitis or pneumonia. I took more antibiotics in a single year than most people do in a lifetime. My mother jokingly called me her "deductible baby" as I met my insurance deductible every year without fail.

In January of this year, I had surgery. I had finally pieced together that I was so miserable because my nose was misshapen and preventing drainage, thus allowing infection and bacteria to prosper. I was right. An x-ray of my nose showed that I needed surgery. Ever since that surgery I have been sick once, and that was because my roommate was sickened by something contagious at work and brought it home. Not a single sinus infection. However, thanks to those constant sicknesses, I lost many a good job... and by now, no one wants to hire me because they see my work history and assume I am unreliable. So not only am I struggling against my past, but I am struggling with being disabled. Is that my fault? No. But I must deal with it all the same, and it doesn't help when there are people around me telling me that I'm fine, and all I need to do is "suck it up."

Fragile in Love

I've never been very lucky in love. I've had a myriad of relationships, but the vast majority lasted barely more than a few weeks, or months, at best. My most recent break up was, well... bizarre, to say the least. Since he and I never spoke, and I could never get a hold of him, I never really told him it was over, but he knew anyway. Weird, I know, but I guess whatever works. There isn't really any hurt feelings, or anger. Its just over, and we're both fine with it. It was definitely better than some I've had. Oh the stories I could tell... But it is safe to say that years passing, two heart breaks and loves lost later, I'm a different woman. Now, when I say here that my heart is hardened, I do not mean I don't love. I love my friends, my mom, my grandmother... But its been quite some time since I felt the thrill and tingle of real love. Years, even. To be honest, I thought for a long time that I was so scarred by some of what I'd been through that I just was incapable of letting someone in that far, and I was not capable of falling in love. It was a depressing thought, and honestly one that plagued me for some time. Recently though, I've been feeling better as a whole. Even with my health, financial, and medical issues, as a person I feel more confident and secure. For the first time, I felt that small thrill ignite a spark in me, and tiny though it was, it was there. It quickly was smothered by some set backs, but its back again, stronger this time. With its presence, I have felt something I had not dared to feel in a very long time. Hope. Hope is a dangerous thing. Every time I feel hope, I run the risk of getting hurt, of feeling pain. Due to my experiences, the idea of getting close enough to someone that they can hurt me is terrifying. I'm a little naive though, in the aspect that despite this overwhelming terror, I keep trying. I think I'd rather risk getting hurt, than risk losing potential happiness. I'm not jumping the gun here, or anything... but the potential for something is definitely there, and I won't risk losing it. Not this time.

As I said in an earlier blog, I recently took a trip down to Florida. I've never been before, and it was the first time in 20 years that I've seen the beach. The trip was short, but I would never dream of complaining. I enjoyed myself, and I want to go again in the future. I really liked how he put it when he was asked what it was all about. "It was a very long first date." All I can say is I hope there are more dates to come.

College and Me

So a fellow "spoonie" is apparently studying to be a teacher, and needs to present her own material for her class. She asked the rest of us to pitch in, and talk about how its been to try and go to college with our disabilities. I obliged, and what I intended to be a short insight into my particular situation turned... well in to more of a blog. So I'm going to put it up here. I plan to talk about my trip to Florida soon, but things are pretty hectic and I'm still kind of reeling, so it won't be tonight, or probably tomorrow either. We'll see.

The post:


Since I'm only recently diagnosed for only SOME of my problems, I can really speak from the viewpoint of someone who didn't understand that she was sick, or that is in the process of discovering she is sick for the first time.  I can really analyze how being in school has changed for me.

Recently I had my learning disorder offically disagnosed, autism (which we already knew).  Specificly auditory processing disorder.  What this means for me in a classroom is that talking, shuffling, papers, typing... any sound is a huge distraction.  Not only can I not concentrate on a lecture but I can't even hear it if I try.  I have to have either a note-taker, or I have to be my own stenographer, and type the entire lecture as its being told.  I type almost fast enough to pull it off verbatim.  Since I was only just disagnosed, I have not been able to use any of the disability resources in my classes.  I'm being forced to take the semester off because my physical state is in such decline that I still cannot find a job I can do, and I cannot make the long walks to class on my own.  Without a job, I can't afford more doctor's visits, or even the gas money to get to campus. Up until now, my classes have been a battle. I did very well at ITT, scoring all As and Bs in my classes. The classes were small and I was allowed by my teachers to skip the lecture half of the class and then just come in during lab and work. I would just read the assignment, the slides, and my book, and generally figure out the lesson on my own. On the odd occasion that I DID have a question, my teacher was right there to help me out, and was not at all bothered by answering things they had gone over in lecture. I wasn't diagnosed, but I explained my unique learning style to them and they were more than willing to comply. Its a shame that ITT is so horrible, their teachers have a lot of heart... but anyway I transferred to the University after ITT screwed me over, and my education went to hell. There was no way to just "skip" lectures, and there were no labs to speak of. It was all auditory, and in the giant lecture halls or auditoriums, I was often seated alphabetically in the back without a say in the matter. So I couldn't hear OR see anything going on. The teachers were a nightmare to talk to or get a hold of with a few exception. I failed almost every class. On top of that I bit off way more than I could chew with an 18 credit hour workload. My hands cramp and swell if I write too much, and I was in a few classes (math for example) that demanded a lot of actual handwritten material. I fell behind in these classes first, just because of that. It didn't take long til I was floundering, on the verge of being kicked out, and I talked to one of the advisors. Instantly my world lit up. He was the one who listened to what I said and pushed me to go see the doctor, to admit that I had a problem and needed help. A few of my friends had been saying it for a while, but they were sympathetic, and I brushed off their concern. Here was a stranger telling me something was very wrong and that I needed to get help. It was my slap to the face that sent me straight to my doctor and then in to a series of specialists and tests that I'm not yet finished with. Every question, thought, and worry I have, he listens to and addresses. Even things that are more personal than just school. He cares a lot about his students, and being a man who walks with a cane, I think he gets where I'm coming from. With my APD I need to avoid lecture style classes as much as I can. I was supposed to start classes today, but I will not be joining my peers this fall. I'm out of money, and time. No books, no tuition. I'm taking the fall off, and hopefully things will look better in the spring.

As far as my mobility issues, I can't afford a parking pass to park on campus, and even if I could the walks are still very long. My shoulder bag is over my "weight limit" and causes me severe pain and exhaustion, as well as extended pain long after I've put it down. The amount I have to walk swells my hips, knees, ankles, and radiates pain all through my lower back. So needless to say, even on the days where I could pull myself out of bed and make it up the stairs just fine, were still still daunting. Aside from that, my exhaustion made it almost impossible to wake up. I'd set alarms and put them away from where I sleep to force myself to get up and go over to them to turn them off, but I was so out of it, I would just sleep right through them. Nothing worked. And its so sporadic, there is no way I can wake up early, not feel well, and email my instructor to let them know I'm not coming. They're lucky to hear from me before 3 PM. Some were understanding, most were not. I also have some mild anxiety about forgetting things, and on the first day of classes last semester, I was about five minutes late to class, and no one was in the room. I sat in the hall and waited half an hour. No one showed. I started to panic, thinking I'd written down the wrong room number and so I went down to the office. It was closed. This was an afternoon class and the office isn't open after 5. I was forced to walk all the way back to my car and drive home, all that time and effort for nothing. I called the next day to check and was told that the room had been changed. I was confused how they could change the room and not notify anyone, but apparently I was somehow the only one who didn't know. I was so embarrassed and flustered that I almost didn't go to the class the next day. As it is, I'm thinking about changing to a tech school somewhere to get my degree instead, since those types of schools are far better for someone who needs hands on style learning. But there aren't any schools around here that have the degree I need. I would have to move far away, and I'm terrified of losing my already very weak saftey net, losing my doctors who know and understand my conditions, and leaving all my friends and family. I'm an independant woman, but just today I almost blacked out in the bath tub and I was home alone. If I flat out live alone, I am prone to fainting spells that if I hit my head, leave me passed out alone for hours. I've done it before, and it was a nightmare. So, I guess my hope is that with my diagnosis I can find some kind of happy soulution in all this mess.


I plan on coming back here and cleaning up my writing. It was a hasty reply, and some of the thoughts and ideas tend to trail off or jump around. I'm too tired and out of it right now to bother, however. Sweet dreams, world.