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Thursday, June 21, 2012

I can see! I can see!

I'm pleased to report that LASIK went extremely well, and my vision is incredible now! I feel so fortunate and extremely relieved to know that I will no longer need glasses or contacts! There is nothing worse than having your glasses consistently slide down your face, when you're outside in the summer. My glasses never stayed on my face, if I sweat at all. But, no longer!

Had my post-op appointment today, and was told everything looks great! There is a lot of redness in both eyes from a suction device they use to keep your eyes in place, and in the correct position. Getting that in place for me, was the worst part of the whole ordeal. When they put it on my eye, something pinched, causing me to jump and dislocating this eye intruder. I, of course began to cry, and then the surgeon says, "maybe we won't get this done today", which of course made me more upset. I bit my tongue while they tried 3 more times to get the suction into place. Once it was finally on, I had to track the laser around, above me, in a cylinder. That went on for probably 2 minutes, the red disappeared, and they said it was done. The other eye went much more smoothly, that time, and I was given paint-ball type goggles to wear, so I wouldn't rub my eyes. Apparently, everyone's initial results vary, but I was incredibly lucky for once, and could immediately see 20/25. My girl, Hillary was helping me out post-op, to assist with eye drop timing, and support as there was little information about what to expect. I was tired and irritable when I got back to my apartment. Although, completely overwhelmed with joy that I could see so well, without glasses!

The genius(es) who invented this procedure are my present heroes, because I no longer have to deal with a frame vision! I keep thinking, "I need to take my contacts out.". But really, my vision has been corrected to 20/30. I can read those tiny letters at the very bottom of the testing scale. I used to be able to see the E on top, and the next 2 lines, if I was lucky.

Because I remember the tremendous fear I woke up with everyday, that my vision was permanently gone, I an thankful beyond words that I was able to receive this opportunity to see well, and then, I got through the procedure with fantastic results. I am so overjoyed presently!

While this procedure will not correct my neurological vision issues, I still find it difficult to fathom that this is my vision now. I just feel so fortunate that all of this transpired in less than a month, and now I'm sitting here with vision, I never thought I'd have, without the assistance of glasses or contacts. Not only, am I so thrilled about my vision, but also about how quickly my family stepped to the plate to help me pay for this procedure. I am so thankful they have my back through this eternal ordeal, as my advancements in my recovery simply wouldn't be possible without them.

I

Tuesday, June 19, 2012

Nerves of steel (I need)

Well, my hope has been restored thanks to my amazing family. I called the laser surgeons office yesterday to book an appointment. I guess electing to have a surgeon reshape the cornea in my eye, with a laser is what I want, actually, I just want to be able to see without wearing glasses on my face, or getting corneal ulcers from contacts. The idea behind this surgery seems so revolutionary. All of my neurological doctors have not had a reason why I shouldn't have this procedure, which is an incredible relief!
There's always a potential for harm in some fashion, with everything we do, so I'm trying my best to keep in mind that chances of this surgery going wrong are probably similar to that of a plane crashing into my apartment. Do I ever worry that might happen, nope. Therefore, I'm trying not to worry that I could have a complication, or go blind (again). They just have to tell you those things, in case, to save their own behinds. Although, I certainly do not recall being warned that cardiac arrest was a potential side effect of Yaz. I felt pushed into that decision, because, what I'd asked for had apparently been taken off the market. I feel like I need to be so much more vigilant now, in terms of every medical decision I make for myself. I tried to use good judgement, but, I think that I probably put too much trust in others judgement, and not enough in my own. Acquiring a brain injury is an extremely crappy way to have to learn that lesson, I must say.

Nearly every doctor I've regularly seen since my injury has received calls from me, my family, and the laser surgeon. All I can do now, is hope for the best!

Friday, June 15, 2012

The trouble with hope...

It's usually my standard MO to not really get too excited about the prospect of fancy medical techniques or procedures, as I know .from experience, I'll fall. Hard if I don't get what I wanted or expected. Although, today, I had met my guard down, as I was overjoyed about the possibility of getting LASIK, the laser eye surgery. Done, as I despise glasses, and I can't feel my fingertips anymore, which means I am basically unable to wear contacts, as I can't put them in my eyes. Recently, I found an optometrist I liked, who told me of a laser eye surgeon she knew of, who was local, and might possibly work with me ad a charity case. I was warned it probably wouldn't be free, as there are unavoidable costs involving the laser, which they do not foot. I had a consultation on Wednesday, to see if I could be considered a candidate. I found out I could be, which was a great relief! But , only if my visual field testing showed that I had enough peripheral vision. Today, they got my tests from 2010, and said they weren't comfortable performing the surgery on me, as I had such a limited field of vision. I wondered aloud what year the records they were looking at, we're from.2008. It is an inexplicable miracle, how much my eyesight has improved since then. I looked at my tests last night, and the improvent isn't to perfect , but I now process what I see in most area of the eye. Before, I only saw from the upper right quadrant in both eyes. Today, I see pretty well, in both of the right quadrants, as well as the lower left. My left upper quadrant still not so much, but I'll take what I can get. Seeing those results made me do pleased, as it's proof my eyes are still improving! They called me back, while we're at the grocery store, to inform me that I was once again a candidate. Bug , also to discuss the cost of the procedure. Apparently, their normal charge is $3000 per eye. They offered me a 50% discount, which is quite generous, though still not anywhere within my price range, or what I'd imagined a "small percentage" might be. There's no denying that this would be a long term investment, but living on government funds doesn't exactly make payments possible. It is my goal to change my situation this year, but even do, I haven't been gainfully employed for almost 5 years, and incurring debt, even if I do see better just isn't financially justifiable. Additionally, I've heard from multiple sources, that this procedure is $1000 per eye in Canada. No, I won't have the vision I was hoping for this summer, on my adventures, but at least I now know I have this option when I can afford to make payments on it. And I thought I was doing so well by not getting my hopes up. When I received the first phone call that my vision wasn't good enough, I was upset, but I'd prepared myself for that possibility. And when I learned I was again, an eligible candidate, but the cost was so much more than what I'd assumed charity LASIK night be, I was furious. I got to be the sobbing idiot wandering around the grocery store, which makes me even angrier, because I can't contro my emotions. I was proud of myself for getting my shopping done, even though I was whimpering , and clinging to a wad of t.p. As I am just that classy.

I'll probably never learn to stick with my gut feelings, but, at the end of the day, I'm still an eligible candidate for LASIK, even if it's not as soon as I'd hoped. An the BEST new that my visual field is still improving!!

Sunday, June 10, 2012

I don't know where to begin...

Most if the time I feel like my family are the only folks reading mg ramblings, though the numbers suggest otherwise, so here I am. I think this is my last week at CHIPS, whereI I interned, trying to make their space more accessible for kids with physical impairments. Last week I was feeling like a bit of a failure as both of my grant applications were rejected. The whole organization is going to be strapped for funding in the upcoming year, as there isn't much money going around this year, but it was still a bit of a smack in kthe face, to not get either one of the grants id written. Additionally, I was reeling from learning that they'd 'forgotten ' to follow through with me, in regards yo serving as a board member. Not the end of the world, but, it stung a a bit, for sure. I also was under the impression, I'd be looking for a new position, in which I wouldn't be a volunteer, but an employee. I don't really feel as though I have delusions of grandeur, in the realm of employment, but this program certainly makes me feel like I do, or it has in the past. CHIPs felt like an incredible opportunity because the organization puts in more than 100% everyday, as they believe in their purpose and mission. I really needed the active reminder that passion for a cause does still exist, even in the face of difficulty.. I think if I could create a position for myself right now, I'd want a position where I could somehow infuse passion and belief into the army of folks who collect government funds, and somehow get people to realize that if you fall, you get up, and carry on, and not by depend on booze or drugs to take you away from your pain. Only you have the power to change your life.

Not long after I obtained this charming injury, I realized the more I pushed myself, the easier things became. I've been told at some point, by most of my doctors that this is my life now, and I need to accept it. If I had done that, I'd probably be overweight in my bed all day long. I've learned I have to trust my gut, and fight for what I think I need, until I get it, someone makes me realize I'm being unreasonable. Before my injury I never had to really fight to get things I needed or wanted . But government funding is an entirely different ball game, and if I don't believe in myself, no one else will either. At this point , I've realized the more I do, the more I'm able to do/get done. Also, create awareness, I'm still nervous/anxious around new groups of people, but I'm slowly learning to use my injury as an ice breaker. Depending on my dose of audacity, and who I think I'm talking I'm talking to, depends on how much detail I give them. I wish I could say the same thing every time, but, I tried that, and peoples reactions, varied so greatly, I couldn't deal with it. So, I tried gauging the situation first, and then creating my response.

Last Friday, I was at the track, running away from myself, basically, as it calms my nerves, makes me more patient with other, and footed anxiety, well I think it does. I know when I've been running consistently, because I handle on favorable situations much more calmly, and think through a situation, as opposed to being reactionary. Yup, I need to run!
While I'm ambling along, I try to smile, or say hi to others who are there. That day a group of 4 college kids came , and ran around me on the track. I'd seen them before, but was focused on getting my work out done. My childhood nickname of Sloth, now could not be more appropriate, as they did 2 laps, for my one. On my last lap, I saw them crossing the field towards me, which surprised me. The guy, who seemed to be the group leader, said hello to me and then says, "I just want to tell you, that you're amazing. My dads a neurologist, so I know hard is, for you to come out here and do what you do. You're here whenever I am, and I think that is so amazing. And, what did I do, I cried. That's definitely not the first time someone's told me that, but he did it such, a genuine, heartfelt way, it made me cry like a baby. I hate it when people cry when they get a compliment. It's such a confusing response. All I could say, was, "thank you, and I'm sorry, but I can't help it.". I just got so overwhelmed by this kid, and his friends approaching me to basically pay me respect. It made me realize that, when I go out, I usually have my guard up. But, for whatever reason, I feel safe at the track, and just comfortable. So, he definitely caught me off guard, and I started crying, because I couldn't find the words to express my appreciation for his respect. It. Was such a beautiful moment for me, probably because I felt like he might have an inkling about my daily struggles, and how hard I work to try not to focus on life's trivialities. I'm the first to admit I still do, though, I seriously hope thats the first step in getting rid of such useless thoughts.

I was lost for a brief moment, in euphoria, until I realized what time it was. I had a .w1230 ride scheduled with SSTA, and they have new policy where they can come 20 minutes before or after the scheduled time. They usually come early, like before I'm ready, but it's a crappy policy either way. They weren't there at 1245, when CHIPS called to say they had yo go without me. I was pretty upset to have missed the final staff hurrah, but, such is life. I just went home, and got more amazing news. My new eye doctor is incredible! She thinks outside the box, and had asked me if I'd be open to LASIK. I'd said yes, but that I hadn't considered having it done because I can't afford it. Friday, I received an email saying that she'd found a doctor who was willing go do the surgery for me, as a charity case. When she suggested it, I never actually thought it might be a possibility for me. I don't want to get my hopes up, but wouldn't the gift of clear vision, be the most INCREDIBLE occurrence! I don't want to gather my hopes too high, as it seems like there could be a neurological reason, as to why I shouldn't do it, but let's hope not!

Thursday, June 7, 2012

Burn-out

Well here I am, mid-may, with a nice list of accomplishments/ things to look forward to, though , also feeling like a big fat failure of life at the moment(if you read this and feel compelled to tell me I'm not a failure, please fight that urge, as I assimilate that kind of condolence with weakness, so it just makes me angry, thank you!). When it rains , it pours and I find it doubtful things will let up any time soon. Whether it be small things, like being verbally harassed by people, or having a day of uncontrollable twitchiness, society hasn't helped. Or having to repeat the headache of finding another roommate/ live-in aide., and dealing with the unnecessary stresses of government programs. I always feel like I'm walking on egg-shells, because just when you feel like you can take deep breathe, some kind of monster tears its ugly head. 2 weeks ago I received a letter stating that they didn't have the requested information on my current roommate. She submitted that in February, and I asked her to straighten things out with them. She did, and apparently was informed they had made a mistake. Shocking, but I was a little upset I'd received a letter suggesting I'd lose section 8 funding and promptly be evicted, if I failed to provide this information. So comforting. I really despise being treated as though I'm a parasite on society by these programs. They're in place to help people who are otherwise unable to provide for themselves. Because some people create a lifestyle from these programs, doesn't mean that everyone does. I am so disgusted by the fact that our society is so consumed by assumptions. We all do it, whether or not we realize it, it's part of being human, but now that I live on a different end of the spectrum, it's much more apparent to me now, as I encounter these situations on an almost daily basis. Take yesterday for example, I was at the Y, in the gym on the weight manes, when I noticed a man of curious appearance approaching women and professing his eternal love for them, while mentioning his love for his mother repeatedly. I was extremely thankful to not be approached, when I saw him leave. Or do I thought. I went to the lobby to leave, and there he was waiting by the door. He repeated the same school for me and I responded that's nice, but I need to go, and walked out the door. It didn't end there, as he jumped up and followed me declaring he lived on the street the y is on. He carried about the many blessed qualities of his mother, again. When I reached the bus stop, he pointed out his apartment. When I suggested he go there, I got the whole whhhhy don't you like me charade. This oddity continued for about 10 minutes, until he asked if I had a boyfriend. St that point, I'd had enough , told him he was making me uncomfortable and he needed to leave. To be honest I had no idea if he'd respond go my request, but he said he'd always love me, and left, and then the bus came. I got on, relieved to be out of that situation , but very much on edge. The bus I was on, brought me to the hospital, where I had to switch buses to get home. When I got there, I realized my bus had departed 2 minutes prior to our arrival, and wouldn't come again for an hour. I've had this happen before, and gone down to the library, or called a cab. But the idea of getting in a car with someone I didn't know, was terrifying, even if it was their occupation. I called some friends, and was so grateful when my friend Stacie said they could come get me. I really feel like I'm taking advantage of friends when I ask them for rides, which is why I don't like to do it. But I seriously could not have been more relieved to have them with me, as I went home to my empty apartment. I've been realizing a lot lately that I make friends easily, but unintentionally push them away, because I'm afraid to ask for help, or don't want to share my story, or what I perceive as my week messes. I've had to relearn that we all have weaknesses, as everyone has a different story, and circumstances. I'm always beating myself up because I feel like I've been slow with fully regaining my consciousness, but then someone else out in the world freaks me out, and I walk away shaken., but that's all, and always having learned something new about myself. Not to assume that I can rescue myself from every unfavorable situation I find myself in. As Jason and Stacie say, "that's what friends are for."
You always think other people have more favorable situations than you do, but the truth is, were all struggling with something. Just because I'm feeling like a failure of life in this moment, doesn't mean I am one. Every day is a new day, right!?