Now where are my superpowers? Damn, I forgot to bring a spider or something to bite me. Maybe I'll still mutate. I'll settle for Not As Sick Anymore Man. Hell, I'll take Not Any Worse Off Man. I'll even be a sidekick as long as there's no net negative effect.
Everything went fine. I rode to IU with my parents and stayed with them for a bit, then took the People Mover over to Methodist for my thing. I had to wait a little bit because one of my doctors was running late. It wasn't a big deal, I just dozed off in the waiting room. My neurosurgeon basically said the plan was good and asked if I had any questions. I was comfortable with the radiosurgery stuff, but my jaw is bugging me and asked him to take a look. He didn't see anything obvious and recommended I see a dentist. The radiation doc came in shortly after, went over the procedure, and was there to answer any questions. I still didn't have any. I then went back to the room with the machine, lay down, and got my head fastened into the mask. They did a couple quick X-rays, then started the radiation. There were 4 bursts, arcs as they're called from the Novalis machine, each lasting a couple minutes. I couldn't really see much through the mask, and just kept my eyes closed anyway. I didn't really feel anything, other than the table moving. I saw a few flashes of light during one arc, probably as some of the radiation beam got close to my retina. I smelled a hint of bleach a bit, too (still do off and on a little). It took maybe 15 minutes on the table.
Afterward, they went over potential side effects (sore throat, headache, fatigue, etc.), all minor, but said to let them know if anything was unbearable or lasted longer than a couple days. I had the radiation doc look at my jaw and he also referred me to a dentist. I was good to go, just tired from not sleeping much and from taking a valium earlier in the morning to help with my nerves and wooziness. One of the technicians gave me a I for completing the procedure, which was nice. I'll follow up in 3 months with an MRI and see how things are progressing.
I matriculated back to IU via the People Mover to be with Mom. She'd be in recovery for about an hour and was sleeping. Her thing went well. They ended up taking out the 2 stents that were there and put in 3 new ones. She won't have to go back until March to get those out. Hopefully they'll stretch out her bile ducts enough, but, if not, they'll do it again with either more stents or bigger ones. We then just waited for her to wake up and see how she did with some stuff to drink. Once she was relatively alert, she was discharged and we went home. She's doing well, just a bit icky and tired, which is to be expected.
I'd planned on sleeping after eating something, but got to messing around online. I caught up on my usual sites, then tried to find cheap/free dental care. I'm still looking into it, but if anyone has any suggestions, let me know. I have no dental coverage at present, and no money, really, either, but I have to figure something out. I'm due for a visit to the dentist, anyway (it's been awhile because of the money/insurance stuff), but my jaw is killing me. It's not as bad now, but I think I'm just getting used to the pain. My teeth all seem fine to me, and none of them hurt or anything, but my jaw feels misaligned and it's a bitch to chew. I can't think of anything I did, other than sleeping with my mouth open because of my bad sinuses and maybe rolling over on it wrong or something. Hopefully I can find a way to see a dentist and at least get a check up.
Now is the hard part, just waiting. The procedure was a bit anticlimactic, which isn't necessarily a bad thing, but I was expecting a little more fanfare, I guess. Again, I'm happy to have done something, but I hate just sitting around and not doing anything else. I understand that's how this works, but that doesn't mean I have to like it. At least it should be a relatively busy 3 months with the holidays and everything.
Thanks to everyone for the well wishes and support! It means a lot!
-B
Thursday, November 11, 2010
Tuesday, November 9, 2010
Radiosurgery...
I know it's been awhile since I've posted. It's just been a mix of being tired and woozy and stressed and letting that get me out of the habit of writing. The idea is to start posting daily, or at least regularly, again. There's a lot to talk about, and much to catch up on, but I'll focus on radiation stuff this time.
So I go in on Wednesday, November 10th, for radiosurgery (targeted, radiation--think short term lasers instead of extended periods flashlights) at Methodist Hospital. They'll be using a Novalis machine. I did my scans and had my mask made a couple weeks ago. The doctors will basically program the machine to target the tumor based on the scans. The mask helps keep me still and lets the machine know where I am. It will be a stereotactic procedure, meaning it's just one dose. There was talk of maybe fractionating the dosage (breaking it up), but they're confident that a single dose will work best. I'll be awake, and the procedure only takes about 20 minutes. The prep work and going over everything beforehand will take longer.
For awhile, I thought I'd have to travel to get radiation treatment. The plan from Phoenix was to use a Cyberknife machine, but it would have to be the latest model. There's an older version here at IU, but it's range isn't enough to get both my head and neck like the newer one could do. I was under the impression that the new Cyberknife machine was the only (or at least the best) tool to treat my tumor. It turns out that Novalis and Cyberknife are just brands, but they do the same basic things, just in slightly different ways. I was worried for awhile that I may have to settle on lesser equipment because of geography/insurance/money issues, but that's not the case. I'm not sure why I was confused about things before. I guess I misunderstood some of what I was told, plus I didn't ask the right questions. I'm content with this part of the situation now.
I'll probably be a bit tired, maybe a little queasy, and have a sore throat right after the procedure. That should only last a few days if I feel it at all. I'm not too worried about it. I'm not doing a whole lot as it is, anyway. Longer term side effects would all stem from tissue damage, pretty much, mainly the nerves near the tumor.
I'm still not big on doing radiation. It does seem to be the consensus next step, though. And after discussing it with my doctors, I'm not as worried about the risks as I was before. But there are risks. I'm mainly worried that healthy tissue will be adversely affected. The point of radiosurgery is to minimize those risks, beaming the radiation from multiple angles so that no single point is overly exposed. But not only is there that healthy tissue surrounding the tumor, the tumor is growing from and right next to some important nerves and blood vessels. I'm mainly worried that the radiation will damage those. I'm not terribly concerned about any future cancers from the radiation. It won't metastasize the benign tumors I already have, but there's a slight chance it could cause something else down the road. Being a relatively new technology that's used on very sick people, there's not a lot of long term data available. We'll see, I guess.
I am happy to finally be doing something proactive. I'd rather try something that doesn't work than just sit here and waste away, doing nothing. Aside from the potential to damage healthy tissue, I'm mainly worried that it won't do much of anything. Ideally, it will shrink the tumor significantly to where it's not an active problem. It may have already caused permanent damage to the nerves, so I may get no relief from the wooziness, but we won't know until the tumor's gone or much smaller. That is an unlikely result, but possible. At the very least, we're hoping that radiation stops further growth. Moderate shrinkage would be a realistic goal. There's also the possibility that the tumor's consistency will change, hardening it up and making it less gooey, which would make cutting it out easier if that's what we decide to do later. More surgery is an option depending on how I take to the radiation. The worst part about radiation is that it takes awhile to work. It could be years for the full effect to be seen, and probably months before anything is noticeable.
I've been more anxious and nervous about getting this done that I would have expected. While always mindful of the risks of any procedure, and hopeful that those risks are minimized as best as can be done, I'm usually pretty even keeled about medical treatment. The procedures are supposed to be solutions to problems, and I like solving problems. I was excited for surgery last year. I don't know...I think that just the general factor of the unknown and unknowable with this is what makes me nervous. Surgery is more straightforward: cut out the bad stuff and try to leave the good stuff alone. If you nick something, you know you nicked it and then you deal with that. With radiation, you zap the bad stuff, hoping the good stuff doesn't get too damaged in the process, then you wait to see what happens. I don't like to wait.
Mom is having some stuff done the same day. They put in some stents to help make a better connection between her new liver and her bile ducts a couple months ago, and now they'll go in to take those out. I'm more worried about her than I am me. I just have to lie still for a little bit. They have to navigate inside of her body to tweak some stuff that's already sensitive. She has to be at the hospital at 6AM for an 8AM procedure. I'll go with her and my step-dad when they leave, hang out with them for a bit, then take the People Mover over to Methodist for my stuff, which starts at 8:30AM. I'll talk with the doctors ahead of time, get everything situated, then lie there and let the machine go to work. Once I'm done, I'll get a hold of my step-dad and he'll pick me up when he has a chance once mom's done. If I'm feeling OK, I'll just take the People Mover back from Methodist to IU.
Thanks for your support! I'll let you know how it all went once I'm feeling up to writing. I'm sorry I've not done a better job of keeping you all up to date. It just gets hard when I feel extra crappy, plus being busy setting everything up, dealing with SSI ridiculousness and occasionally having something to do. I promise I'll try to do better. Thanks again for sticking with me. It helps more than you know.
-B
So I go in on Wednesday, November 10th, for radiosurgery (targeted, radiation--think short term lasers instead of extended periods flashlights) at Methodist Hospital. They'll be using a Novalis machine. I did my scans and had my mask made a couple weeks ago. The doctors will basically program the machine to target the tumor based on the scans. The mask helps keep me still and lets the machine know where I am. It will be a stereotactic procedure, meaning it's just one dose. There was talk of maybe fractionating the dosage (breaking it up), but they're confident that a single dose will work best. I'll be awake, and the procedure only takes about 20 minutes. The prep work and going over everything beforehand will take longer.
For awhile, I thought I'd have to travel to get radiation treatment. The plan from Phoenix was to use a Cyberknife machine, but it would have to be the latest model. There's an older version here at IU, but it's range isn't enough to get both my head and neck like the newer one could do. I was under the impression that the new Cyberknife machine was the only (or at least the best) tool to treat my tumor. It turns out that Novalis and Cyberknife are just brands, but they do the same basic things, just in slightly different ways. I was worried for awhile that I may have to settle on lesser equipment because of geography/insurance/money issues, but that's not the case. I'm not sure why I was confused about things before. I guess I misunderstood some of what I was told, plus I didn't ask the right questions. I'm content with this part of the situation now.
I'll probably be a bit tired, maybe a little queasy, and have a sore throat right after the procedure. That should only last a few days if I feel it at all. I'm not too worried about it. I'm not doing a whole lot as it is, anyway. Longer term side effects would all stem from tissue damage, pretty much, mainly the nerves near the tumor.
I'm still not big on doing radiation. It does seem to be the consensus next step, though. And after discussing it with my doctors, I'm not as worried about the risks as I was before. But there are risks. I'm mainly worried that healthy tissue will be adversely affected. The point of radiosurgery is to minimize those risks, beaming the radiation from multiple angles so that no single point is overly exposed. But not only is there that healthy tissue surrounding the tumor, the tumor is growing from and right next to some important nerves and blood vessels. I'm mainly worried that the radiation will damage those. I'm not terribly concerned about any future cancers from the radiation. It won't metastasize the benign tumors I already have, but there's a slight chance it could cause something else down the road. Being a relatively new technology that's used on very sick people, there's not a lot of long term data available. We'll see, I guess.
I am happy to finally be doing something proactive. I'd rather try something that doesn't work than just sit here and waste away, doing nothing. Aside from the potential to damage healthy tissue, I'm mainly worried that it won't do much of anything. Ideally, it will shrink the tumor significantly to where it's not an active problem. It may have already caused permanent damage to the nerves, so I may get no relief from the wooziness, but we won't know until the tumor's gone or much smaller. That is an unlikely result, but possible. At the very least, we're hoping that radiation stops further growth. Moderate shrinkage would be a realistic goal. There's also the possibility that the tumor's consistency will change, hardening it up and making it less gooey, which would make cutting it out easier if that's what we decide to do later. More surgery is an option depending on how I take to the radiation. The worst part about radiation is that it takes awhile to work. It could be years for the full effect to be seen, and probably months before anything is noticeable.
I've been more anxious and nervous about getting this done that I would have expected. While always mindful of the risks of any procedure, and hopeful that those risks are minimized as best as can be done, I'm usually pretty even keeled about medical treatment. The procedures are supposed to be solutions to problems, and I like solving problems. I was excited for surgery last year. I don't know...I think that just the general factor of the unknown and unknowable with this is what makes me nervous. Surgery is more straightforward: cut out the bad stuff and try to leave the good stuff alone. If you nick something, you know you nicked it and then you deal with that. With radiation, you zap the bad stuff, hoping the good stuff doesn't get too damaged in the process, then you wait to see what happens. I don't like to wait.
Mom is having some stuff done the same day. They put in some stents to help make a better connection between her new liver and her bile ducts a couple months ago, and now they'll go in to take those out. I'm more worried about her than I am me. I just have to lie still for a little bit. They have to navigate inside of her body to tweak some stuff that's already sensitive. She has to be at the hospital at 6AM for an 8AM procedure. I'll go with her and my step-dad when they leave, hang out with them for a bit, then take the People Mover over to Methodist for my stuff, which starts at 8:30AM. I'll talk with the doctors ahead of time, get everything situated, then lie there and let the machine go to work. Once I'm done, I'll get a hold of my step-dad and he'll pick me up when he has a chance once mom's done. If I'm feeling OK, I'll just take the People Mover back from Methodist to IU.
Thanks for your support! I'll let you know how it all went once I'm feeling up to writing. I'm sorry I've not done a better job of keeping you all up to date. It just gets hard when I feel extra crappy, plus being busy setting everything up, dealing with SSI ridiculousness and occasionally having something to do. I promise I'll try to do better. Thanks again for sticking with me. It helps more than you know.
-B
Wednesday, October 27, 2010
*Sigh*...
I've been down the last while. I've not felt great, which is a big factor. There's a bit of a letdown after a good stretch of fun stuff (UFC in town, going out with friends, making it back up to ND, etc.), then getting back to just sitting here. I have a weird, nervous vibe about this radiosurgery treatment...happy to do something, unsure if it'll work, worried it'll do more harm than good, sad that I need it at all. Mom's starting her stupid shit again. I'm not surprised, it's past due. And, of course, she has to fuck with me right as I'm in this weird place with the radiation stuff. I'm just tired of everything...being sick, not able to do much, being broke, being stuck here, actually being tired...just everything.
There's very little that I like about my life. The couple things that I do like get all muddled in with everything else because I'm sick, so I can't enjoy them for long, if at all. I have a good time at the UFC press conference, then I almost pass out and need help getting back into a chair and then out of the building. I enjoy some food and almost choke on it. I have a great time going back to Notre Dame, then can't do much of anything for the next week and a half (so far). My little ones come over, but I have to go back to bed because I don't feel good. And on and on...
And now my Internet connection is in jeopardy again. If it were just a matter of money, then I'd understand. I don't expect my mom to pay for it, and I'm appreciative that she's taken care of it the last while. A little notice that it might be getting shut off would be nice, and more than just the day before. But that's a bit moot, because she might kill it out of spite. She's pissed at me for no good reason because she won't listen to me. So I don't know what's going on there. The kicker is that if she doesn't want me to have Internet service, then I can't have it, whether I come up with the money or not. You can only have one cable account per household, and it's in her name. I don't know what I'll do if I can't get online. My already pathetic social life will dry up almost completely. It'll take me just a couple days to run out of stuff to do. I don't know...I might just stay in bed 20 hours a day. That's about how I feel most of the time, anyway.
I hate having so little control over my life. I can't do this because I'm too woozy. I can't do that because I can't see. This costs money I don't have. That's too far away and I can't get a ride. And if it's not the wooziness or my eyes, then it's my sinuses or my lungs or headaches or a queasy stomach. I'm sick of feeling like shit all the time.
Why do I have to fight for everything??? I don't mind working for stuff, but why must I have to fight? I have to fight to stay conscious, to stay upright. I have to fight with mom over stupid shit because she's ridiculous. I have to fight with my computer because it messes up for no reason. I have to fight with myself not to cry. I have to fight with myself to cry. I have to fight to remember to do stuff. I have to fight to get SSI. I have to fight to get out of bed. I have to fight to get to sleep. I have to fight to stay focused. I'm tired of fighting, I just want to live.
If there are such things as karma and reincarnation, either I must have been a real bastard in a previous life, or I'm due for some good times. Hopefully it's the latter, and I'm ready now.
Sigh...
-B
P.S.
I'll get to the stuff I've been promising when I can. Please continue to be patient. Thanks :)
There's very little that I like about my life. The couple things that I do like get all muddled in with everything else because I'm sick, so I can't enjoy them for long, if at all. I have a good time at the UFC press conference, then I almost pass out and need help getting back into a chair and then out of the building. I enjoy some food and almost choke on it. I have a great time going back to Notre Dame, then can't do much of anything for the next week and a half (so far). My little ones come over, but I have to go back to bed because I don't feel good. And on and on...
And now my Internet connection is in jeopardy again. If it were just a matter of money, then I'd understand. I don't expect my mom to pay for it, and I'm appreciative that she's taken care of it the last while. A little notice that it might be getting shut off would be nice, and more than just the day before. But that's a bit moot, because she might kill it out of spite. She's pissed at me for no good reason because she won't listen to me. So I don't know what's going on there. The kicker is that if she doesn't want me to have Internet service, then I can't have it, whether I come up with the money or not. You can only have one cable account per household, and it's in her name. I don't know what I'll do if I can't get online. My already pathetic social life will dry up almost completely. It'll take me just a couple days to run out of stuff to do. I don't know...I might just stay in bed 20 hours a day. That's about how I feel most of the time, anyway.
I hate having so little control over my life. I can't do this because I'm too woozy. I can't do that because I can't see. This costs money I don't have. That's too far away and I can't get a ride. And if it's not the wooziness or my eyes, then it's my sinuses or my lungs or headaches or a queasy stomach. I'm sick of feeling like shit all the time.
Why do I have to fight for everything??? I don't mind working for stuff, but why must I have to fight? I have to fight to stay conscious, to stay upright. I have to fight with mom over stupid shit because she's ridiculous. I have to fight with my computer because it messes up for no reason. I have to fight with myself not to cry. I have to fight with myself to cry. I have to fight to remember to do stuff. I have to fight to get SSI. I have to fight to get out of bed. I have to fight to get to sleep. I have to fight to stay focused. I'm tired of fighting, I just want to live.
If there are such things as karma and reincarnation, either I must have been a real bastard in a previous life, or I'm due for some good times. Hopefully it's the latter, and I'm ready now.
Sigh...
-B
P.S.
I'll get to the stuff I've been promising when I can. Please continue to be patient. Thanks :)
Monday, October 25, 2010
Grrrrr....
I haven't felt up to writing much today, either. I was planning on going to the Pacers Fan Jam thing, but that didn't work out. It was a rather crappy day as far as being tired and woozy and just sick. I was up for a couple hours this afternoon, then napped until after 9PM. I've been up since, but mainly because I don't want to be in bed. It's just one of those days.
I do that radiation prep work in a few hours. I'm hoping to be able to shower beforehand. I may lie down for a little bit, too, but we'll see. I might just try to stay up so I can fall asleep during the scans. I'm not sure, but I could find out the exact timetable and plan for the actual treatment, too. They should know soon, anyway, and I'll be sure to relay the info.
I've got mixed feelings about it all. I'm happy to finally be doing something, especially after basically wasting a year dealing with the fuckers in Phoenix (administrative bitches...the actual medical staff was fine). I'm still not big on doing radiation, though, but that's the consensus for what to do next. My biggest issue is just the unknown. Will it work? Will it help? Will it make things worse? How long will results take? Will I feel any better? What if the damage already done is permanent? Will I really have to deal with this shit the rest of my life? I'd have those same questions regardless of the treatment, but this one just takes longer to answer them. I do like being proactive and attacking it, though.
We'll see how I feel once I'm home and all that, and I'll try to give more details about everything, plus talk about the other stuff that I've yet to be able to get to. Hopefully I'll feel better and will be in a bit of a better mood. I'm just sick of being sick and not being able to do even simple things that I want to do. Thanks for sticking with me and I'll do my best to keep you apprised of what's going on.
-B
I do that radiation prep work in a few hours. I'm hoping to be able to shower beforehand. I may lie down for a little bit, too, but we'll see. I might just try to stay up so I can fall asleep during the scans. I'm not sure, but I could find out the exact timetable and plan for the actual treatment, too. They should know soon, anyway, and I'll be sure to relay the info.
I've got mixed feelings about it all. I'm happy to finally be doing something, especially after basically wasting a year dealing with the fuckers in Phoenix (administrative bitches...the actual medical staff was fine). I'm still not big on doing radiation, though, but that's the consensus for what to do next. My biggest issue is just the unknown. Will it work? Will it help? Will it make things worse? How long will results take? Will I feel any better? What if the damage already done is permanent? Will I really have to deal with this shit the rest of my life? I'd have those same questions regardless of the treatment, but this one just takes longer to answer them. I do like being proactive and attacking it, though.
We'll see how I feel once I'm home and all that, and I'll try to give more details about everything, plus talk about the other stuff that I've yet to be able to get to. Hopefully I'll feel better and will be in a bit of a better mood. I'm just sick of being sick and not being able to do even simple things that I want to do. Thanks for sticking with me and I'll do my best to keep you apprised of what's going on.
-B
Sunday, October 24, 2010
Hopefully later today...
I still have lots to update you on, but I still don't feel up to writing about it all right now. It's been more of a tired thing than a woozy thing lately. Blah...
The biggest news, and I really, really hope to get into it in more depth in a few hours after resting, is that I'll have radiosurgery (focused radiation over a few treatments--perhaps just one--instead of blanket radiation over a longer period of time) VERY soon. I go Monday to get a scan or two done, plus I'll have a mask fitted. Those will help to tell the machine where to zap me. I'm not sure how long after that's done that I'll actually go in for treatment, but it will be within the next couple weeks, and possibly later this week. I'm excited to get that going, but still a little worried that it won't work or that it might damage healthy tissue, but there's a risk with anything we'd try to get this damn thing smaller (and eventually completely out, hopefully). It's the best course of action at this stage, and something's gotta be done. We'll see... The plan is to give more details next time, but I wanted to at least mention it now in case I can't expand on everything before I go in Monday.
There's other stuff, too, that I want to talk about, like meeting a college friend for dinner and the UFC that just happened, so that's in the works, too.
And I'm crashing pretty good now, so I'm off to bed here after I wash up and brush my teeth. I know I've not been posting as much lately, but thanks for sticking with me and for reading. I'll get back on track here once I feel a little better.
-B
The biggest news, and I really, really hope to get into it in more depth in a few hours after resting, is that I'll have radiosurgery (focused radiation over a few treatments--perhaps just one--instead of blanket radiation over a longer period of time) VERY soon. I go Monday to get a scan or two done, plus I'll have a mask fitted. Those will help to tell the machine where to zap me. I'm not sure how long after that's done that I'll actually go in for treatment, but it will be within the next couple weeks, and possibly later this week. I'm excited to get that going, but still a little worried that it won't work or that it might damage healthy tissue, but there's a risk with anything we'd try to get this damn thing smaller (and eventually completely out, hopefully). It's the best course of action at this stage, and something's gotta be done. We'll see... The plan is to give more details next time, but I wanted to at least mention it now in case I can't expand on everything before I go in Monday.
There's other stuff, too, that I want to talk about, like meeting a college friend for dinner and the UFC that just happened, so that's in the works, too.
And I'm crashing pretty good now, so I'm off to bed here after I wash up and brush my teeth. I know I've not been posting as much lately, but thanks for sticking with me and for reading. I'll get back on track here once I feel a little better.
-B
Saturday, October 23, 2010
Well...
I didn't feel so great today, so I didn't get to writing like I wanted to. C'est la vie, I guess.
Here's what you should look forward to:
Tuesday: Good news about radiosurgery (happening soon!)
Wednesday: A nice evening out with an ND friend who was in town
Thursday: Therapy session went OK and then family was over
Ongoing: Food stamp renewal ridiculousness and SSI stuff
UFC 121 is Saturday night. I'll be downtown, probably at Buffalo Wild Wings on Washington St. Let me know if you want to come hang out!
Go Irish! Beat Navy!
-B
Here's what you should look forward to:
Tuesday: Good news about radiosurgery (happening soon!)
Wednesday: A nice evening out with an ND friend who was in town
Thursday: Therapy session went OK and then family was over
Ongoing: Food stamp renewal ridiculousness and SSI stuff
UFC 121 is Saturday night. I'll be downtown, probably at Buffalo Wild Wings on Washington St. Let me know if you want to come hang out!
Go Irish! Beat Navy!
-B
Thursday, October 21, 2010
I'll be back...
I know I've not been terribly active the last while with posting. I've just been a bit extra busy, and then when I've gotten time to write, I've been soooo tired. Of course, more than a couple times I planned on just napping for a bit before getting up to post something, but those all turned into 8 hour or so naps. I have lots of news and good stuff to report, and I'm hoping to maybe get something up tonight ("Why doesn't he do it right now since he's typing this?"), but we'll see. The answer to my parenthetical question is that there's a lot to get to and I'm just not up to doing it all right now. Plus my eyes hurt. And I'm cooking something to eat. I'll get to it, don't worry :).
In the meantime, if there's ONE (or more, really, but especially the ONE) thing that you want me to write about or that you want me to change/add on here, what is it?
I'm around and I'll get you all updated soon...
-B ;)
In the meantime, if there's ONE (or more, really, but especially the ONE) thing that you want me to write about or that you want me to change/add on here, what is it?
I'm around and I'll get you all updated soon...
-B ;)
Monday, October 18, 2010
A Fabulous weekend...GO IRISH!...
I had an amazing weekend! It was a great time, and something that I really needed. I felt pretty good, for the most part, surely in large part from the rush of being back on campus with good company Saturday and from seeing some of my little ones on Sunday. Thanks so much to Mrs. ETHM and her dad for the great conversation and for their generosity for bringing me!
I got picked up and went to my friends' house on Friday night to make it easier to leave in the morning for ND. It was also nice to hang out, too. The pizza was good, as was the company. Despite the strong indifference by us guys, we were overruled and watched The Runaways after eating. It was alright. I wasn't super familiar with the story of the band and didn't realize that they were all so young. It was a crazy time. We all went to bed after the movie.
I slept well and was surprisingly refreshed to be up before 7AM, a time that I'm usually just lying down. Just over 4 hours of sleep did the trick, which isn't usually the case anymore. Being excited to get back to Notre Dame after so long surely helped give me some extra pep. It only took a few minutes to get ready and we headed out.
It was a nice, easy drive with very little traffic. Even when we got into South Bend, it wasn't too bad. We had a nice conversation, my friend, her dad, and I, on the way up. It was mostly political in subject matter, which isn't something I usually enjoy, but I liked it. Our views are similar on most of what was discussed, so there wasn't any arguing, really, but even when we disagreed, it was very pleasant and respectful. Especially at home, this isn't something I'm used to. It felt good to have a cordial, intelligent, and engaging conversation about potentially touchy topics. It was nice to mix in some ND talk from an older alum, too. It's hard to have an appreciation for how special a place Notre Dame is without having gone there and the shared experiences, even if 40 years apart, for a unique bond among Domers.
We made good time, a little under 3 hours, I think. We were able to park on campus, in the lot just nort of the Grotto, thanks to my friend's dad's connections. We stopped at the Grotto for minute, then made our way to the Basilica for a quick walk through. I'd almost forgotten how beautiful it is inside. Then we stopped at Sorin, my old dorm for a bit.
I looked for my named carved on a brick on the porch, but I couldn't find it. Someone probably carved over it. There are new porch swings now. They're a little smaller, but they still have the same view of God Quad that I miss. Even after being gone for 8 years, the bells chiming every 15 minutes still got a reaction out of me ;). We made our way to the Bookstore, which was, of course, packed. They picked up a couple trinkets and I just looked around a little. We stopped at the Visitor/Alumni Center nextdoor to pick up some maps. I still remembered where everything was, but there is so much new stuff that I needed a little help with that.
Next up was the new DeBartolo Performing Arts Center, but it was closed and we couldn't get inside. I was really looking forward to checking that out...next time, for sure. They'd just broken ground as I was finishing up school, and then they'd just had some of the foundation and framing up the last time I was there that next fall when I last made it up. We walked through some tailgators and made our way to the Joyce Center. We couldn't see the inside because the basketball team was practicing, but the renovations that we were able to see are very nice. We meandered through and got to the North Dome of the JACC to see if they had the tables set up for class reunions. I'm not sure if there'd be any reunions, but the tables were there, as were a few corporate booths. I got a few freebies. My friend and her dad left from there to go to a lecture at the Snite Museum of Art. I was interested in going, but wanted to use the time to walk around and see the new sights.
From the JACC, I got a quick look at some of the new athletic facilities. They open up the football practice fields for fans now, which was very cool. From there, I made it to the new Jordan Hall of Science. It's amazing. And huge. They had some chemistry exhibits in the main hallway with a movie special effects theme. There was break-away glass, fake blood, a cool touch screen computer and many others. A doctoral student and her husband did the fake blood, and they were from France. It was nice conversing with them in French for a bit.
I kept making my way north taking in the new buildings and general atmosphere. It was such a lovely day, perfect for walking around and for catching a football game. After making my rounds, I headed back to Sorin to meet a friend I hadn't seen since 2002. I got a little stuck by the crowd lining up to watch the team walk from the Basilica to the Stadium. Once I got back to the dorm, I went inside and checked out the first floor a bit. The TV lounge has been upgraded and is really nice. They have a note by the light switch asking people to turn everything off if you're the last one leaving. I got bitched at when I was there for doing stuff like that...lol I guess I was just ahead of my time.
While I waiting for my friend, I started to eat the rest of my lunch, then continued after she, her husband, and her parents arrived. It was nice to catch up with her in person and to meet her family. She's one of the couple people I've been in regular contact with since school, and it was cool to be able to look her in the eyes and not just read her words. We all had a nice chat, reminiscing a bit, and just enjoying such a beautiful day.
Then it was off to the Stadium for the game. I wanted to get there a little bit early so they could check my backpack. I like to watch the team warm up, too. I got there before my friend and her dad, but they made it in plenty of time before the kickoff. Our seats were good, in the southwest corner. We had a decent vantage point, but I had forgotten how hard the benches were and how close they were together. I wasn't really used to actually sitting in them, though, as students only sit at halftime. The folks sitting around us were pretty cool, for the most part, but a couple of ladies sitting directly in front of us must not have realized how little room there was. It wasn't too bad, but it took some maneuvering to get comfortable.
Overall, the game was good. Winning by 24 is never bad, but we were pretty sloppy in the first half despite the score. We lucked out with the turnovers. Most of the action happened on the other side of the field, though, so it was hard to see exactly what was going on at times. I can't remember being at a game when it was so unbalanced that way. And despite a few minutes of unexpected rain, it was still beautiful out.
The worst part of the game, and this is definitely nit picking, was the Western Michigan band. They kept playing the Rocky theme (at least 25 times) and they played almost every time the ND band did, and since WMU was closer to us, ND got drowned out. WMU still isn't as annoying as USC, though. I'm not sure I could have taken it had we been playing the Cheaters...err...Trojans.
After the Irish victory, we made our way across campus back to the van, stopping by LaFortune first. It's a bit different from when I was there. They'd renovated some restaurant areas right after I left, and now the lounges are upgraded, too, with flat screen TVs, etc. The first floor, at least, still has the same basic setup, though. They still have the Irish Impact poster that I'm in hanging just outside the Huddle Mart. I was a student manager working the game (hoisting the kicking net in the south end zone) on my 20th birthday (November 21, 1998), and I'm a blurry blob in the background.
And we passed by the Administration Building (the Dome), too:
It was easy getting off of campus. There was traffic for awhile in South Bend on the way home, but it flowed nicely. It wasn't bad at all once we were on the outskirts of town. It was a nice drive down US 31 back to Indy. We had more good conversation, with my friend's dad making sure she kept an eye on our speed. It was cute/funny listening to those exchanges ;). We got some drive through fast food in Kokomo for dinner which did the trick. We made good time on the way back, too, getting to my friend's house around 9:30PM. We spent a few minutes catching up on the day's events with my friend's husband. He didn't go to the game because he had to work. She checked up on their toddler son whom she hadn't seen since morning and her hubby was kind enough to drive me home. We were all tired or else we may have hung out a little more.
I crashed not long after I got home. The plan was to sleep for a couple of hours, then watch the taped UFC 120 before looking over all that I'd missed on Facebook and Twitter (didn't want to spoil the results). I didn't get up until the next morning, and family came over shortly after I was awake for a cookout birthday party for my brother. It was nice to see everyone, especially my little ones. It's crazy how fast these kids are growing up, and how independent they're becoming. It was a good time catching up on this and that and just being around each other. I got a bit woozy towards the end of the visit, but it wasn't too bad. I didn't make it to zombie levels ;).
Once everyone was gone, I went back to my room, watched the UFC, then got caught up online. There was the Colts game, too. That all took awhile, and then the weekend started catching up with me a bit, so I went to bed. I was hoping to have this post up Saturday night, then when I didn't get up from my 'nap,' and then Sunday evening didn't work out, either, but that's how it goes. The Colts being the late game didn't help with that. I was only about 2/3 into the game as I was messing around online at the same time. We won, and I'll take it. The Colts have a bye next week, which is much needed with everyone being banged up.
I'll take it. I had an awesome weekend. There was good company, a nice homecoming (at ND), and time well spent with my family. All were long overdue. I'd forgotten about the smell of the grills on football Saturdays, and how the campus is so beautiful this time of year. Seeing how young the students looked made me feel so old, though. Did I look like that to the alumni when I was there? I guess I really hadn't been back in awhile. I'm so happy and thankful to have had the opportunity. I've wanted to visit much more often, but being sick and broke put a damper on all of that. Even if I can't get tickets, I'll try to see if I can at least ride up with friends again to be a part of the overall atmosphere again. I still have some places to check out that were closed this past weekend.
Thanks so very much to all who made it such a special and invigorating weekend for me! I haven't smiled that much for that long in such a great while. From the bottom, top, and all sides of my heart, thanks again!
...And our hearts forever, LOVE THEE NOTRE DAME!!!
-B :D
I got picked up and went to my friends' house on Friday night to make it easier to leave in the morning for ND. It was also nice to hang out, too. The pizza was good, as was the company. Despite the strong indifference by us guys, we were overruled and watched The Runaways after eating. It was alright. I wasn't super familiar with the story of the band and didn't realize that they were all so young. It was a crazy time. We all went to bed after the movie.
I slept well and was surprisingly refreshed to be up before 7AM, a time that I'm usually just lying down. Just over 4 hours of sleep did the trick, which isn't usually the case anymore. Being excited to get back to Notre Dame after so long surely helped give me some extra pep. It only took a few minutes to get ready and we headed out.
It was a nice, easy drive with very little traffic. Even when we got into South Bend, it wasn't too bad. We had a nice conversation, my friend, her dad, and I, on the way up. It was mostly political in subject matter, which isn't something I usually enjoy, but I liked it. Our views are similar on most of what was discussed, so there wasn't any arguing, really, but even when we disagreed, it was very pleasant and respectful. Especially at home, this isn't something I'm used to. It felt good to have a cordial, intelligent, and engaging conversation about potentially touchy topics. It was nice to mix in some ND talk from an older alum, too. It's hard to have an appreciation for how special a place Notre Dame is without having gone there and the shared experiences, even if 40 years apart, for a unique bond among Domers.
We made good time, a little under 3 hours, I think. We were able to park on campus, in the lot just nort of the Grotto, thanks to my friend's dad's connections. We stopped at the Grotto for minute, then made our way to the Basilica for a quick walk through. I'd almost forgotten how beautiful it is inside. Then we stopped at Sorin, my old dorm for a bit.
Next up was the new DeBartolo Performing Arts Center, but it was closed and we couldn't get inside. I was really looking forward to checking that out...next time, for sure. They'd just broken ground as I was finishing up school, and then they'd just had some of the foundation and framing up the last time I was there that next fall when I last made it up. We walked through some tailgators and made our way to the Joyce Center. We couldn't see the inside because the basketball team was practicing, but the renovations that we were able to see are very nice. We meandered through and got to the North Dome of the JACC to see if they had the tables set up for class reunions. I'm not sure if there'd be any reunions, but the tables were there, as were a few corporate booths. I got a few freebies. My friend and her dad left from there to go to a lecture at the Snite Museum of Art. I was interested in going, but wanted to use the time to walk around and see the new sights.
From the JACC, I got a quick look at some of the new athletic facilities. They open up the football practice fields for fans now, which was very cool. From there, I made it to the new Jordan Hall of Science. It's amazing. And huge. They had some chemistry exhibits in the main hallway with a movie special effects theme. There was break-away glass, fake blood, a cool touch screen computer and many others. A doctoral student and her husband did the fake blood, and they were from France. It was nice conversing with them in French for a bit.
I kept making my way north taking in the new buildings and general atmosphere. It was such a lovely day, perfect for walking around and for catching a football game. After making my rounds, I headed back to Sorin to meet a friend I hadn't seen since 2002. I got a little stuck by the crowd lining up to watch the team walk from the Basilica to the Stadium. Once I got back to the dorm, I went inside and checked out the first floor a bit. The TV lounge has been upgraded and is really nice. They have a note by the light switch asking people to turn everything off if you're the last one leaving. I got bitched at when I was there for doing stuff like that...lol I guess I was just ahead of my time.
While I waiting for my friend, I started to eat the rest of my lunch, then continued after she, her husband, and her parents arrived. It was nice to catch up with her in person and to meet her family. She's one of the couple people I've been in regular contact with since school, and it was cool to be able to look her in the eyes and not just read her words. We all had a nice chat, reminiscing a bit, and just enjoying such a beautiful day.
Then it was off to the Stadium for the game. I wanted to get there a little bit early so they could check my backpack. I like to watch the team warm up, too. I got there before my friend and her dad, but they made it in plenty of time before the kickoff. Our seats were good, in the southwest corner. We had a decent vantage point, but I had forgotten how hard the benches were and how close they were together. I wasn't really used to actually sitting in them, though, as students only sit at halftime. The folks sitting around us were pretty cool, for the most part, but a couple of ladies sitting directly in front of us must not have realized how little room there was. It wasn't too bad, but it took some maneuvering to get comfortable.
The worst part of the game, and this is definitely nit picking, was the Western Michigan band. They kept playing the Rocky theme (at least 25 times) and they played almost every time the ND band did, and since WMU was closer to us, ND got drowned out. WMU still isn't as annoying as USC, though. I'm not sure I could have taken it had we been playing the Cheaters...err...Trojans.
After the Irish victory, we made our way across campus back to the van, stopping by LaFortune first. It's a bit different from when I was there. They'd renovated some restaurant areas right after I left, and now the lounges are upgraded, too, with flat screen TVs, etc. The first floor, at least, still has the same basic setup, though. They still have the Irish Impact poster that I'm in hanging just outside the Huddle Mart. I was a student manager working the game (hoisting the kicking net in the south end zone) on my 20th birthday (November 21, 1998), and I'm a blurry blob in the background.
 |
| I'm pointing at me, of course. That was almost 12 years ago...wow. |
And we passed by the Administration Building (the Dome), too:
It was easy getting off of campus. There was traffic for awhile in South Bend on the way home, but it flowed nicely. It wasn't bad at all once we were on the outskirts of town. It was a nice drive down US 31 back to Indy. We had more good conversation, with my friend's dad making sure she kept an eye on our speed. It was cute/funny listening to those exchanges ;). We got some drive through fast food in Kokomo for dinner which did the trick. We made good time on the way back, too, getting to my friend's house around 9:30PM. We spent a few minutes catching up on the day's events with my friend's husband. He didn't go to the game because he had to work. She checked up on their toddler son whom she hadn't seen since morning and her hubby was kind enough to drive me home. We were all tired or else we may have hung out a little more.
I crashed not long after I got home. The plan was to sleep for a couple of hours, then watch the taped UFC 120 before looking over all that I'd missed on Facebook and Twitter (didn't want to spoil the results). I didn't get up until the next morning, and family came over shortly after I was awake for a cookout birthday party for my brother. It was nice to see everyone, especially my little ones. It's crazy how fast these kids are growing up, and how independent they're becoming. It was a good time catching up on this and that and just being around each other. I got a bit woozy towards the end of the visit, but it wasn't too bad. I didn't make it to zombie levels ;).
Once everyone was gone, I went back to my room, watched the UFC, then got caught up online. There was the Colts game, too. That all took awhile, and then the weekend started catching up with me a bit, so I went to bed. I was hoping to have this post up Saturday night, then when I didn't get up from my 'nap,' and then Sunday evening didn't work out, either, but that's how it goes. The Colts being the late game didn't help with that. I was only about 2/3 into the game as I was messing around online at the same time. We won, and I'll take it. The Colts have a bye next week, which is much needed with everyone being banged up.
I'll take it. I had an awesome weekend. There was good company, a nice homecoming (at ND), and time well spent with my family. All were long overdue. I'd forgotten about the smell of the grills on football Saturdays, and how the campus is so beautiful this time of year. Seeing how young the students looked made me feel so old, though. Did I look like that to the alumni when I was there? I guess I really hadn't been back in awhile. I'm so happy and thankful to have had the opportunity. I've wanted to visit much more often, but being sick and broke put a damper on all of that. Even if I can't get tickets, I'll try to see if I can at least ride up with friends again to be a part of the overall atmosphere again. I still have some places to check out that were closed this past weekend.
Thanks so very much to all who made it such a special and invigorating weekend for me! I haven't smiled that much for that long in such a great while. From the bottom, top, and all sides of my heart, thanks again!
...And our hearts forever, LOVE THEE NOTRE DAME!!!
-B :D
Friday, October 15, 2010
Doc appointment went well, ND tomorrow!...
I saw one of my surgeons today. He's a really good guy, genuinely cares, and answers all of my questions, no matter how haphazard or long-winded they are, and without making me feel stupid for asking something that's maybe not terribly relevant. His assistant is super nice, too, and we got to talk for a few minutes. It's always good to feel listened to and cared for by doctors. A healthy detachment is fine, but that doesn't mean that they should be aloof. Knowing that they all care (and pretty much all of my regular docs are cool this way) really helps to put me at ease with my situation. I feel that they're doing all that they can to help me, and when they can't, they help me find others who can.
We went over the MRI from last week and the overall tumor situation. Everything is stable. If the tumors have grown, it's not by much. It's hard to be exactly precise because each scan has slightly different images. There's nothing drastically different. The chiari malformation was specifically looked at. All the fluids seem to be flowing nicely, but my cerebellum does definitely hang down a bit lower than normal (which is what a chiari malformation is). It's possible that this contributes to my troubled throat function, but it's more likely that the tumor affects the cranial nerve that controls that. There is a surgery to help correct the malformation, and my surgeon will confer with my neurologist about it, but, at this point, it looks like we'll just keep an eye on it. The surgery basically entails reshaping my skull a bit at the base to alleviate any pressure on the cerebellum. While it is a big deal, and has its risks, it maybe seems a bit scarier than it sounds because it involves my skull and brain and all that.
After the appointment, my mom drove me to pick up a pizza from Papa Murphy's for tonight. They make the pizza, then you take it home and actually bake it. Because of that, I was able to use my food stamps to buy it, which worked out for me. It feels good to contribute a little, especially when I'm being treated to the game. After getting the pizza (sausage and pepperoni is what they wanted...add mushrooms, and that's my usual order, so it works out), I got a few things at the grocery store. Being financially challenged (or, more bluntly, being all but broke), I'm planning on packing a lunch to take with me. I'll just make a couple turkey sandwiches and bring some chips and carrots to go with those. Next up was a little lunch from McDonald's dollar menu, to go, then home.
I still have a few things to get together before I get picked up tonight. I'll round up my meds, clothes, toiletries, and the food, and I'll shower here in a little while, too. Then I'll get picked up tonight. We'll eat, maybe watch a movie and/or play a couple games for a bit. We'll be heading out of here at 7AM, so we should get to campus by 11AM. Hopefully the traffic isn't too bad and we arrive a little earlier. I haven't been on campus since 2002, and there are lots of new buildings that I want to check out. I'll be working on a to do list and a map here shortly. I'm hoping to meet some friends who'll be up for the game, too. So far, I've arranged to see one. We'll be in front of Sorin, my old dorm, at 12:45PM just before the band plays at Bond Hall (which was usually my wake up call as a student as it's just behind the dorm). The plan is to get to the Stadium around 1:45PM for the 2:30PM start. Well, TV coverage starts at 2:30PM, the actual kickoff won't be until about 2:45PM or so.
I'm really excited to be going back. It's been way too long. It's just been tough being sick and broke and all that. I can't believe it's been 8 years. It'll be nice to reconnect a bit. It's a special place, surely to me, and it's been a big part of my life. I'm looking forward to it being a more active part, even if just for a few hours. If you're going to be on campus, let me know and we'll meet up!
GO IRISH!!!
-B
We went over the MRI from last week and the overall tumor situation. Everything is stable. If the tumors have grown, it's not by much. It's hard to be exactly precise because each scan has slightly different images. There's nothing drastically different. The chiari malformation was specifically looked at. All the fluids seem to be flowing nicely, but my cerebellum does definitely hang down a bit lower than normal (which is what a chiari malformation is). It's possible that this contributes to my troubled throat function, but it's more likely that the tumor affects the cranial nerve that controls that. There is a surgery to help correct the malformation, and my surgeon will confer with my neurologist about it, but, at this point, it looks like we'll just keep an eye on it. The surgery basically entails reshaping my skull a bit at the base to alleviate any pressure on the cerebellum. While it is a big deal, and has its risks, it maybe seems a bit scarier than it sounds because it involves my skull and brain and all that.
After the appointment, my mom drove me to pick up a pizza from Papa Murphy's for tonight. They make the pizza, then you take it home and actually bake it. Because of that, I was able to use my food stamps to buy it, which worked out for me. It feels good to contribute a little, especially when I'm being treated to the game. After getting the pizza (sausage and pepperoni is what they wanted...add mushrooms, and that's my usual order, so it works out), I got a few things at the grocery store. Being financially challenged (or, more bluntly, being all but broke), I'm planning on packing a lunch to take with me. I'll just make a couple turkey sandwiches and bring some chips and carrots to go with those. Next up was a little lunch from McDonald's dollar menu, to go, then home.
I still have a few things to get together before I get picked up tonight. I'll round up my meds, clothes, toiletries, and the food, and I'll shower here in a little while, too. Then I'll get picked up tonight. We'll eat, maybe watch a movie and/or play a couple games for a bit. We'll be heading out of here at 7AM, so we should get to campus by 11AM. Hopefully the traffic isn't too bad and we arrive a little earlier. I haven't been on campus since 2002, and there are lots of new buildings that I want to check out. I'll be working on a to do list and a map here shortly. I'm hoping to meet some friends who'll be up for the game, too. So far, I've arranged to see one. We'll be in front of Sorin, my old dorm, at 12:45PM just before the band plays at Bond Hall (which was usually my wake up call as a student as it's just behind the dorm). The plan is to get to the Stadium around 1:45PM for the 2:30PM start. Well, TV coverage starts at 2:30PM, the actual kickoff won't be until about 2:45PM or so.
I'm really excited to be going back. It's been way too long. It's just been tough being sick and broke and all that. I can't believe it's been 8 years. It'll be nice to reconnect a bit. It's a special place, surely to me, and it's been a big part of my life. I'm looking forward to it being a more active part, even if just for a few hours. If you're going to be on campus, let me know and we'll meet up!
GO IRISH!!!
-B
Wednesday, October 13, 2010
Just a couple lines...
I wrote this on January 13, 2003, probably late at night. I just happened to be inspired, by what, I can't remember. The intention is to use the lines in a bigger piece, to add onto the few words that are already there, but they do alright standing alone.
Drown (tentative title)
I want to walk in your rain
And feel you surround me.
I want to drown in your love
And breathe in your beauty.
Tuesday, October 12, 2010
New layout...
I tweaked the layout a bit. Hopefully it's an improvement. Let me know what you think. If you're not a fan of the new design, what would you rather see? If you do like it, how can I make it better, still? The goal was to give the text more horizontal room, plus to optimize the ads a bit. I also added a hit counter, and I'm apparently over 1000 views. I'm sure a couple hundred are mine, though.
If you have any other suggestions, whether it be about the layout, the color scheme, the content...whatever, let me know and I'll do my best to incorporate them. As much as this is about me expressing myself, it's about you receiving that expression. I'm willing to do just about anything that I can do to make your time reading this better.
Thanks,
-B
If you have any other suggestions, whether it be about the layout, the color scheme, the content...whatever, let me know and I'll do my best to incorporate them. As much as this is about me expressing myself, it's about you receiving that expression. I'm willing to do just about anything that I can do to make your time reading this better.
Thanks,
-B
Monday, October 11, 2010
BRB = Be Right Back!...
Most of my communication with others happens electronically, and a big part of that is instant messaging. It's pretty convenient since I mostly sit right here in front of my computer, plus with everyone having these fancy phones and such, you're all texting/IMing more. I use so many chat clients (because you all do) that I had to find a program that combines them all for me, Digsby. It really helps since I have an old, crappy PC, and running several programs at once doesn't work so well. Digsby combines my Yahoo! Messenger, AOL IM, Google Talk, MSN/Microsoft Live Messenger, Facebook chat, and MySpace IM, as well as giving me access to my emails (Yahoo!, Hotmail, Gmail), Twitter, and my Facebook and MySpace feeds. It also supports other sites/programs that I don't use. Digsby isn't perfect, and you can't use all of the features of each individual program (like BUZZ! on YM), and it handles audio/video differently, but for the basics of chatting, it's great. If I ever need to use any native features that Digsby doesn't support, I'll just log out of that account on Digsby and then load the actual program. An extra benefit of Digsby is that it can log your IMs, even from Facebook chat, which isn't natively supported.
I chat a lot, and I get that IMs are informal. I can handle the lack of capitalization (though "i" instead of "I" does bug me) and don't mind too much when people skip the apostrophes on contractions. I especially understand it when people are typing on their phones and the SHIFT or apostrophe keys aren't so accessible. I'm cool with the IM/SMS abbreviations for the most part, too. What I don't like, what I really, really, really can't stand, is when people don't say what they mean:
BRB = BE RIGHT BACK, NOT BYE REALLY BYE
When you send me a "brb," I'm expecting you to return relatively soon. I understand that stuff happens, that you could get busy with something else, that you're computer/phone might mess up, etc., etc., but if you don't actually intend on resuming to the conversation, just say so. Don't leave me hanging. Now, I'm not always just sitting, twiddling my thumbs, waiting for you to come back, but I do allocate my time and attention for your return. Too, if you're going to be more than 5 minutes or so, you're not really planning on being right back. Instead, say that you'll be back shortly or that you'll be back in awhile--"brb" implies immediacy!
This isn't directed at anyone in particular, it's meant for everyone who does this. And there are other habits that bug me on IM, too, like leaving a conversation without saying "goodbye" at all, or failing to conjugate verbs like "to text" (you know who you are! ;) ), but the "brb" thing probably irritates me more than anything as far as Internet chatting goes. If you don't know what something means, or, if you do know, but still don't actually mean it, then don't use that term. You have been put on notice! :D
BRB,
-B
P.S. (see, I said I'd brb, didn't I?)
For the record, I'm OK with using "lol" even if one isn't actually "laughing out loud." "Lol" has come to transcend it's literal meaning and is used to acknowledge something funny or to avoid an awkward pause or such. I do try to at least chuckle whenever I use "lol," though, just for my own amusement and attempts to be honest...lol :P
I chat a lot, and I get that IMs are informal. I can handle the lack of capitalization (though "i" instead of "I" does bug me) and don't mind too much when people skip the apostrophes on contractions. I especially understand it when people are typing on their phones and the SHIFT or apostrophe keys aren't so accessible. I'm cool with the IM/SMS abbreviations for the most part, too. What I don't like, what I really, really, really can't stand, is when people don't say what they mean:
BRB = BE RIGHT BACK, NOT BYE REALLY BYE
When you send me a "brb," I'm expecting you to return relatively soon. I understand that stuff happens, that you could get busy with something else, that you're computer/phone might mess up, etc., etc., but if you don't actually intend on resuming to the conversation, just say so. Don't leave me hanging. Now, I'm not always just sitting, twiddling my thumbs, waiting for you to come back, but I do allocate my time and attention for your return. Too, if you're going to be more than 5 minutes or so, you're not really planning on being right back. Instead, say that you'll be back shortly or that you'll be back in awhile--"brb" implies immediacy!
This isn't directed at anyone in particular, it's meant for everyone who does this. And there are other habits that bug me on IM, too, like leaving a conversation without saying "goodbye" at all, or failing to conjugate verbs like "to text" (you know who you are! ;) ), but the "brb" thing probably irritates me more than anything as far as Internet chatting goes. If you don't know what something means, or, if you do know, but still don't actually mean it, then don't use that term. You have been put on notice! :D
BRB,
-B
P.S. (see, I said I'd brb, didn't I?)
For the record, I'm OK with using "lol" even if one isn't actually "laughing out loud." "Lol" has come to transcend it's literal meaning and is used to acknowledge something funny or to avoid an awkward pause or such. I do try to at least chuckle whenever I use "lol," though, just for my own amusement and attempts to be honest...lol :P
Sunday, October 10, 2010
A very nice Sunday...
Today's been really good. My brother and his family came over to watch the Colts game and to have dinner. I hadn't seen him in awhile, and it's always great to see my little ones. I had some UFC 119 stuff to give him, plus told him about all that went on (I gave him the link to here so he can read it for himself now :D). It was nice catching up a bit, playing with the kids some, and watching the game. The Colts won, but didn't play so well on offense. I'll be happy with the W, though.
My brother just got a new (to him) laptop, and I added some anti-virus software and updated Windows for him. That took much longer than it should. Everything was working fine when I was done, but he couldn't get Windows to load when he got back to OH (for work). He doesn't know much about computers, and is a understandably pissed that now there are issues when it was fine before. I'm still working on a way to fix it--I'm not sure why it's messing up--but there's not a lot I can do from here. It's looking like he'll have to wait until he comes back to Indy (hopefully next weekend) to get it repaired. The particular error doesn't make much sense, especially since it was fine when I was done with it (I made sure everything worked). I do feel bad that he's having trouble with it. He's not the most patient person, especially about stuff he doesn't know much about, so we'll see how things go. I'll be on the case until we get something together that works for him.
I'm still hoping to cut my hair tonight, and I still need to wash my bedding. It's looking OK that I'll get at least one of those done. I still want to do an op-ed thing, too, so it'll be cool if that works out. I have a couple topics in mind, so as long as I'm feeling alright and don't get too distracted, that should up later tonight sometime. Otherwise, it's just the usual TV and messing around online for the rest of the night.
It's really nice when things go well like they did today. It sucks about the PC issues, but I appreciate the family time. I could feel better, and I'm sure it'll hit me before too long, but I'm feeling OK now. I am hungry, though, so I think I'll go work on fixing something to eat.
Thanks again for checking this out, I really appreciate it! Really :D!
-B :)
My brother just got a new (to him) laptop, and I added some anti-virus software and updated Windows for him. That took much longer than it should. Everything was working fine when I was done, but he couldn't get Windows to load when he got back to OH (for work). He doesn't know much about computers, and is a understandably pissed that now there are issues when it was fine before. I'm still working on a way to fix it--I'm not sure why it's messing up--but there's not a lot I can do from here. It's looking like he'll have to wait until he comes back to Indy (hopefully next weekend) to get it repaired. The particular error doesn't make much sense, especially since it was fine when I was done with it (I made sure everything worked). I do feel bad that he's having trouble with it. He's not the most patient person, especially about stuff he doesn't know much about, so we'll see how things go. I'll be on the case until we get something together that works for him.
I'm still hoping to cut my hair tonight, and I still need to wash my bedding. It's looking OK that I'll get at least one of those done. I still want to do an op-ed thing, too, so it'll be cool if that works out. I have a couple topics in mind, so as long as I'm feeling alright and don't get too distracted, that should up later tonight sometime. Otherwise, it's just the usual TV and messing around online for the rest of the night.
It's really nice when things go well like they did today. It sucks about the PC issues, but I appreciate the family time. I could feel better, and I'm sure it'll hit me before too long, but I'm feeling OK now. I am hungry, though, so I think I'll go work on fixing something to eat.
Thanks again for checking this out, I really appreciate it! Really :D!
-B :)
Saturday, October 9, 2010
ND won...organized my room some...
Notre Dame won. We let Pitt back into the game, but I'll take a victory, even if it's a bit ugly. We're 3-3 now, with a favorable schedule coming up. We should be alright as long as we sharpen up a few things, TACKLE BETTER, and take care of the ball. If all goes according to plan, I'll be up for next week's game against Western Michigan. Let me know if you'll be there and we'll meet up!
I also organized my room a little. I went through some papers, threw a bunch out that I don't need anymore (in a box to be recycled). I have some expandable folders and such that I used, as well as some regular ones. I still need to go through a lot of stuff, like my copies of my medical records, but it's a decent start. My desk isn't so cluttered now, though that probably won't last. It was nice to get that done, but I'm paying for it now. All of the looking around and bending over and grabbing this and putting that there got to me. Enh...
I'm hoping to cut my hair tonight, but that's not looking good right now. I'd like to wash my bedding, too, which is looking better than messing with my hair, but still not great. If I can't do either tonight, I hope to be able to tomorrow. My only other plans are to watch the Colts game. Hopefully they'll rid the league of its last undefeated team ;).
There is a Strikeforce MMA event tonight on Showtime. I don't get Showtime, so I'll have find a way to watch later on. Maybe a 'friend' will record it for me ;). There are some good fights on the card, and I'm looking forward to catching them when I can. The trick will be avoiding the results before I can watch it.
Well, that's my day so far. For the rest of the night, I'll be messing around online a bit, chatting some, I'm sure, and getting caught up on some TV. Hopefully I'll get to my hair and laundry, too. It's looking like I'll probably crash a bit early, though, which actually works out since the Colts game is at 1PM. I'm hoping to post something else tonight, a little op-ed piece about a topic yet to be determined. If you have any suggestions, let me know.
Thanks again to all of you read this, and especially to those who comment and let me know. If I can make this blog more enjoyable/useful/entertaining in any way, tell me how and I'll see what I can do.
Thanks so much,
-B
I also organized my room a little. I went through some papers, threw a bunch out that I don't need anymore (in a box to be recycled). I have some expandable folders and such that I used, as well as some regular ones. I still need to go through a lot of stuff, like my copies of my medical records, but it's a decent start. My desk isn't so cluttered now, though that probably won't last. It was nice to get that done, but I'm paying for it now. All of the looking around and bending over and grabbing this and putting that there got to me. Enh...
I'm hoping to cut my hair tonight, but that's not looking good right now. I'd like to wash my bedding, too, which is looking better than messing with my hair, but still not great. If I can't do either tonight, I hope to be able to tomorrow. My only other plans are to watch the Colts game. Hopefully they'll rid the league of its last undefeated team ;).
There is a Strikeforce MMA event tonight on Showtime. I don't get Showtime, so I'll have find a way to watch later on. Maybe a 'friend' will record it for me ;). There are some good fights on the card, and I'm looking forward to catching them when I can. The trick will be avoiding the results before I can watch it.
Well, that's my day so far. For the rest of the night, I'll be messing around online a bit, chatting some, I'm sure, and getting caught up on some TV. Hopefully I'll get to my hair and laundry, too. It's looking like I'll probably crash a bit early, though, which actually works out since the Colts game is at 1PM. I'm hoping to post something else tonight, a little op-ed piece about a topic yet to be determined. If you have any suggestions, let me know.
Thanks again to all of you read this, and especially to those who comment and let me know. If I can make this blog more enjoyable/useful/entertaining in any way, tell me how and I'll see what I can do.
Thanks so much,
-B
Friday, October 8, 2010
MRI is done...
That didn't take nearly as long as I thought. Well, now that I think about it, it was my mom who told me that it was supposed to take forever. I should have known better. I hate when doctors' offices talk to her about me. She always mixes stuff up. Grrrr....in her defense, she told the lady to wait a minute and she'd get me when she called to tell me about the MRI, but she wouldn't wait. At any rate, that part is done. I'll see the docs say here in the next couple weeks as we figure out Plan B.
It all went well enough. My mom wrote that my appointment was at 10:45AM, when, in fact, it was at 11:15AM, but wanted me there at 10:45AM to register and all of that. I got there at 10:20AM and waited about an hour before being taken back. I was comfortable enough inside the machine. I was able to breathe, which was my main concern going in. My head was encased to keep me from moving, and the headphones smashed my ears some. I wasn't impressed with the music selection, but it was nice to have something help drown out the noise of the giant magnet spinning around me. All of the people were really nice, and the student did a good job administering the IV contrast dye. The technician was about to do it, but I offered to let the student go. I'm not squeamish, and needles don't bother me. I do alright with pain, too, so it wouldn't have been a big deal if she messed up. She did a great job, though--I barely felt it. The bandage hurt worse. I like giving students a chance to practice on me when it's something simple like IVs. I'd rather not have them do much operating on me, but I'm happy to help them learn.
...
Every time I walk into that part of the hospital (the cancer center), I get really bummed out. The people are all nice, and it's set up very well, lit properly...the tone is perfect...but I just can't get over the fact that I'm there because I have tumors in my head. Everyone else that's there has something serious going on, too. I'm lucky that my stuff isn't cancerous, but it's still pretty bad. It's easier not to think too much about it all on a day to day basis, but when I'm right there, in the CANCER CENTER, it's hard to ignore. Don't get me wrong, I'm happy it exists, so that I can get the care I need, but it's this huge reminder that something is majorly wrong with me, and that it's so damn difficult to treat. I just keep thinking, "Is this really happening? It's really this serious? I'M going through this?" It's rarely not on my mind to some degree, constantly feeling like crap, but being there screams TUMORS and not just that I'm a little sick.
...
Now I'm just deciding if I'm going to take a nap until (or perhaps through) supper, or if I'll stay up. I did get about 4 hours of sleep last night, plus an hour of disjointed sleep inside the machine, but I'm still constantly tired. My sleep schedule is still off, but I've been sleeping what should be enough. Part of it is the headache medicine, I'm sure, but the rest....? I want to stay up, but I'll end up crashing eventually, anyway. Yeah...I'll probably sleep for a bit.
Thanks for reading :)!
-B
It all went well enough. My mom wrote that my appointment was at 10:45AM, when, in fact, it was at 11:15AM, but wanted me there at 10:45AM to register and all of that. I got there at 10:20AM and waited about an hour before being taken back. I was comfortable enough inside the machine. I was able to breathe, which was my main concern going in. My head was encased to keep me from moving, and the headphones smashed my ears some. I wasn't impressed with the music selection, but it was nice to have something help drown out the noise of the giant magnet spinning around me. All of the people were really nice, and the student did a good job administering the IV contrast dye. The technician was about to do it, but I offered to let the student go. I'm not squeamish, and needles don't bother me. I do alright with pain, too, so it wouldn't have been a big deal if she messed up. She did a great job, though--I barely felt it. The bandage hurt worse. I like giving students a chance to practice on me when it's something simple like IVs. I'd rather not have them do much operating on me, but I'm happy to help them learn.
...
Every time I walk into that part of the hospital (the cancer center), I get really bummed out. The people are all nice, and it's set up very well, lit properly...the tone is perfect...but I just can't get over the fact that I'm there because I have tumors in my head. Everyone else that's there has something serious going on, too. I'm lucky that my stuff isn't cancerous, but it's still pretty bad. It's easier not to think too much about it all on a day to day basis, but when I'm right there, in the CANCER CENTER, it's hard to ignore. Don't get me wrong, I'm happy it exists, so that I can get the care I need, but it's this huge reminder that something is majorly wrong with me, and that it's so damn difficult to treat. I just keep thinking, "Is this really happening? It's really this serious? I'M going through this?" It's rarely not on my mind to some degree, constantly feeling like crap, but being there screams TUMORS and not just that I'm a little sick.
...
Now I'm just deciding if I'm going to take a nap until (or perhaps through) supper, or if I'll stay up. I did get about 4 hours of sleep last night, plus an hour of disjointed sleep inside the machine, but I'm still constantly tired. My sleep schedule is still off, but I've been sleeping what should be enough. Part of it is the headache medicine, I'm sure, but the rest....? I want to stay up, but I'll end up crashing eventually, anyway. Yeah...I'll probably sleep for a bit.
Thanks for reading :)!
-B
MRI today...
So I'll be in the MRI machine for awhile today. Once scan, alone, will take 3 hours, and I have a few I'm getting done. Fun, fun, fun!...or something. It's not too bad, really, but that's a long time to lie still. Hopefully I'll be able to breathe out of my nose. It would really suck if not. I'm just going to try to sleep. I usually do OK that way. I'm pretty sure I'll be in the IU Cancer Center Radiology Dept., and they have music, so that should help.
They'll just be looking at tumor stuff, getting some up to date images. I'll see one of my regular neurosurgeons (he operated on the tumor last year) next week, then a couple of new guys the week after. Since Phoenix dicked me over, we'll be working on Plan B. This MRI will be taking a closer look at my chiari malformation (basically my brain hangs too low in the back). I saw on an episode of House awhile ago that a guy with a chiari malformation had some issues with losing consciousness when he was in certain positions and figured it'd be worth getting a closer look at mine. I realize that House is a fictional TV show, but we hadn't really explored the chiari stuff in any depth, so we'll check it out with the scan today. Also, I've had some swollen lymph nodes in my neck for awhile (biopsy came back clean), and if anything looks wrong with them, we can remove any offending tissue. So there's a lot of information to be gathered. They usually give me a copy of the scans if I ask, and I will ask again, so as long as my PC cooperates and reads the disc, I'll post any particularly cool images sometime soon.
I'm not worried at all about any of it. I'm mainly worried about being somewhat comfortable in the machine. I should be alright as long as I can breathe. And if not, well, too bad, I guess.
Happy Friday!
-B
They'll just be looking at tumor stuff, getting some up to date images. I'll see one of my regular neurosurgeons (he operated on the tumor last year) next week, then a couple of new guys the week after. Since Phoenix dicked me over, we'll be working on Plan B. This MRI will be taking a closer look at my chiari malformation (basically my brain hangs too low in the back). I saw on an episode of House awhile ago that a guy with a chiari malformation had some issues with losing consciousness when he was in certain positions and figured it'd be worth getting a closer look at mine. I realize that House is a fictional TV show, but we hadn't really explored the chiari stuff in any depth, so we'll check it out with the scan today. Also, I've had some swollen lymph nodes in my neck for awhile (biopsy came back clean), and if anything looks wrong with them, we can remove any offending tissue. So there's a lot of information to be gathered. They usually give me a copy of the scans if I ask, and I will ask again, so as long as my PC cooperates and reads the disc, I'll post any particularly cool images sometime soon.
I'm not worried at all about any of it. I'm mainly worried about being somewhat comfortable in the machine. I should be alright as long as I can breathe. And if not, well, too bad, I guess.
Happy Friday!
-B
Thursday, October 7, 2010
SSI Phone Interview done...
Well, that's that...for now. The lady who called from SSI was nice. She knew how to do her job and was sympathetic (though that probably won't help me since she's not part of the decision). She did get a bit sick of me after 90 minutes...lol She was asking about all of my doctors and tests and medicines, and, well, I have (had) a bunch of those. I still have some stuff to submit online, and a few forms to mail out, but I'm in the system and this new application is rolling. Because my eyes messed up before I was 22 and I didn't work enough to get SSA (retirement) benefits, I might be able to go by my parents' work histories. I had my mom's info (she was in the other room), but she found my dad's stuff for me. I'm sure I'll have more stuff to fill out, but I should hear something about this application in a few months.
If I get this one approved, that can only help my pending appeal, I'd think. Plus I'd have some money coming in while I wait to get back pay from the denial that I'm appealing. It's still a ridiculous process, but I'm trying.
My voice is almost gone, my eyes still hurt, and I'm a bit extra woozy from all of this. I ended up not needing to do most of what I did yesterday (at least not for the phone thing today), but it was all useful to have done it. It sucks that I did all of that and don't feel good because of it now when I didn't need it today, though. Oh well.
My cat wouldn't leave me alone. I kept having to shoo her away. And people kept calling in. When there's call waiting, my phone doesn't beep, it gives some weird static noise and I can't hear the call I'm already on. It's very annoying. I didn't want to turn call waiting off in case the doctor called for my mom. She had her routine blood drawing this morning, and if something comes up fishy, they'll call her to tell her what to do. And, of course, I forgot some things upstairs and had to go back to get those. I get horrible reception up here, and she couldn't hear me. That's about when she started getting antsy to finish. To be fair, I did warn her about the phone. ;)
At least that part is done. We'll see how it goes. Hopefully someone with common sense gets my file this time. Even if it goes through, I'll still be poor, but I won't be quite so broke. It'll be nice to have a couple bucks. I already have a long list of stuff I need, like medicine and clothes and a phone.
Thanks for all of your support! I really appreciate it! Thanks for reading this! Spread the word! :P
Happy Thursday (it is Thursday, right?)!
-B
If I get this one approved, that can only help my pending appeal, I'd think. Plus I'd have some money coming in while I wait to get back pay from the denial that I'm appealing. It's still a ridiculous process, but I'm trying.
My voice is almost gone, my eyes still hurt, and I'm a bit extra woozy from all of this. I ended up not needing to do most of what I did yesterday (at least not for the phone thing today), but it was all useful to have done it. It sucks that I did all of that and don't feel good because of it now when I didn't need it today, though. Oh well.
My cat wouldn't leave me alone. I kept having to shoo her away. And people kept calling in. When there's call waiting, my phone doesn't beep, it gives some weird static noise and I can't hear the call I'm already on. It's very annoying. I didn't want to turn call waiting off in case the doctor called for my mom. She had her routine blood drawing this morning, and if something comes up fishy, they'll call her to tell her what to do. And, of course, I forgot some things upstairs and had to go back to get those. I get horrible reception up here, and she couldn't hear me. That's about when she started getting antsy to finish. To be fair, I did warn her about the phone. ;)
At least that part is done. We'll see how it goes. Hopefully someone with common sense gets my file this time. Even if it goes through, I'll still be poor, but I won't be quite so broke. It'll be nice to have a couple bucks. I already have a long list of stuff I need, like medicine and clothes and a phone.
Thanks for all of your support! I really appreciate it! Thanks for reading this! Spread the word! :P
Happy Thursday (it is Thursday, right?)!
-B
Wednesday, October 6, 2010
New SSI application...
My lawyer advised me to start a new SSI application. This is in case the current case gets denied (again) as well as hoping that the new case goes through right away and I start getting paid sooner. I forgot how tedious this all was. Among other things, I have to list all of my doctor appointments, tests, and doctor/hospital/clinic info. I'm far from done, and have over 150 appointments/tests listed. I've seen at least 40 doctors. I've spent 5 hours on this already today, mainly looking through my previous application (on CD) and getting the info from there. They're calling me tomorrow to interview me. I forget what they'll ask, but it's just basic stuff to start off with, I think.
*EPIPHANY*
Maybe the reason I keep getting denied is that I'm apparently well enough to fill out the damn application. Hmmm....is there a way I can not fill it out and still get everything accounted for?
My eyes are hurting now, and I'm a bit extra woozy from all of the reading and head motion. And I'm still not done. Argh.
I'm really sick of this whole process. Why can't they just talk to my doctors and maybe have some of their own poke and prod and observe me for awhile? Wouldn't that be easier for everyone? Filling out this application is making me feel worse! Blah.
I was hoping to get some of this done over the weekend, but I've not felt great, or have I slept well. And I've had some killer headaches, which haven't helped anything. It's been a little better today, but they've not gone completely away. C'est la vie...
-B
*EPIPHANY*
Maybe the reason I keep getting denied is that I'm apparently well enough to fill out the damn application. Hmmm....is there a way I can not fill it out and still get everything accounted for?
My eyes are hurting now, and I'm a bit extra woozy from all of the reading and head motion. And I'm still not done. Argh.
I'm really sick of this whole process. Why can't they just talk to my doctors and maybe have some of their own poke and prod and observe me for awhile? Wouldn't that be easier for everyone? Filling out this application is making me feel worse! Blah.
I was hoping to get some of this done over the weekend, but I've not felt great, or have I slept well. And I've had some killer headaches, which haven't helped anything. It's been a little better today, but they've not gone completely away. C'est la vie...
-B
Tuesday, October 5, 2010
I Think of You...(poem)
I Think of You...
I think of you when the wind blows,
And too, when it is still.
I want to give you everything
That your heart could ever will.
I want to hold you on a pier
Overlooking the setting sun
Over the blue-green ocean in a place
Of which only you and I know.
I want to show you falling leaves,
Tell you that I’m falling, too,
Give you a zillion rainbows
And see you smile your wonderful smile.
I think of you whenever I can,
And can’t, and always do.
I want to touch you again,
But for only the first time, forever.
I want to show you Paris,
For when I was there,
I missed you and your kiss,
Though I didn’t know you but did.
Be at my side, starting before time began.
You already are, sometimes, forever, if only in my heart.
I think of you when the wind blows,
And it’s always blowing somewhere,
Like it always has, like now, in my heart.
Is it blowing in yours, too?
Is it blowing around and around,
Making you feel strangely good?
I loved you before I saw you,
Before I knew who you were.
I want to be with you always,
Loving you, doing for you,
Making me happy by keeping you happy,
As I would so eagerly do.
I think of you when the wind blows,
And it is blowing now.
I want to love you forever,
Let me show you how.
I wrote this for/about a girl my senior year of high school. It didn't help my chances with her, but people seem to have liked it. I'm hoping to convert it into a song at some point, too, but I keep getting stuck. I do have a couple things in mind, though. Enjoy :)
Monday, October 4, 2010
Colts lost...doc today...
Well, the Colts lost yesterday. Tackling was a big issue. So was ball security. Then the Jaguars kicker hits a 59 yard FG to win it. I'm not overly worried about the season, but being 0-2 in the division isn't ideal. We'll be alright, I think.
I saw my ENT doc today. It was just a follow-up to check on some swollen lymph nodes. They were biopsied last time, and everything was fine, but they're still a bit enlarged. They doctor isn't worried about them, so neither am I. If anything fishy is going on, it should show up on the MRI I'm having done on Friday for the tumor stuff. We're not expecting anything, but they could go in and remove the nodes if something looks too crazy on the scans. No biggie. This appointment was timed well, too, because of the extra congestion and nose bleeds I'm dealing with. He told me to just use some Bacitracin ointment to help heal up things and I should be fine. We discussed some different nasal sprays to help with the congestion and drainage, but they all dry me out pretty badly, so we'll stick with the status quo there. Too, depending on how it may affect tumor treatment, I'll probably have my deviated septum fixed soon. My nose is pretty jacked up. It's a fairly simple outpatient procedure. The hope is that it'll help with my breathing. It's especially difficult when I'm in bed. I'm happy with how the appointment went.
My sleep is still way off. I'm tired all the time. And the headaches are getting a little worse, but I can't handle taking that medicine twice a day. I don't know if the last couple weeks are still catching up with me or what. It's not like I have a lot to do and my work is being affected or anything, but it is annoying that I'm always so tired. I do have a few things that I could do (and want to do) to be productive. Plus, I already feel bad enough with the wooziness. Enh...I don't know. I just cleaned my humidifier and have it running now. Hopefully that'll help.
That's it for now. I think I'm going to try to catch up on some TV tonight. If I'm feeling OK, I'm hoping to post again later on, more of a stand alone piece about a yet-to-be-determined topic. If there's anything you want to know or if there's any particular subject you'd like to hear my take on, let me know and I'll see what I can do.
-B
I saw my ENT doc today. It was just a follow-up to check on some swollen lymph nodes. They were biopsied last time, and everything was fine, but they're still a bit enlarged. They doctor isn't worried about them, so neither am I. If anything fishy is going on, it should show up on the MRI I'm having done on Friday for the tumor stuff. We're not expecting anything, but they could go in and remove the nodes if something looks too crazy on the scans. No biggie. This appointment was timed well, too, because of the extra congestion and nose bleeds I'm dealing with. He told me to just use some Bacitracin ointment to help heal up things and I should be fine. We discussed some different nasal sprays to help with the congestion and drainage, but they all dry me out pretty badly, so we'll stick with the status quo there. Too, depending on how it may affect tumor treatment, I'll probably have my deviated septum fixed soon. My nose is pretty jacked up. It's a fairly simple outpatient procedure. The hope is that it'll help with my breathing. It's especially difficult when I'm in bed. I'm happy with how the appointment went.
My sleep is still way off. I'm tired all the time. And the headaches are getting a little worse, but I can't handle taking that medicine twice a day. I don't know if the last couple weeks are still catching up with me or what. It's not like I have a lot to do and my work is being affected or anything, but it is annoying that I'm always so tired. I do have a few things that I could do (and want to do) to be productive. Plus, I already feel bad enough with the wooziness. Enh...I don't know. I just cleaned my humidifier and have it running now. Hopefully that'll help.
That's it for now. I think I'm going to try to catch up on some TV tonight. If I'm feeling OK, I'm hoping to post again later on, more of a stand alone piece about a yet-to-be-determined topic. If there's anything you want to know or if there's any particular subject you'd like to hear my take on, let me know and I'll see what I can do.
-B
Sunday, October 3, 2010
ND 31 BC 13
Today was alright. My sleep's still off, and I was too woozy to shower or do much of anything that I wanted, but it's been much worse. I caught up on a lot of TV, but still have a lot more to watch. Most importantly, Notre Dame won! It's especially nice to beat Boston College. The defense played well. The offense looked good in the first quarter, then...I don't know. I'll take a win any way it comes. Up next is Pitt, then I'll be going up to the Western Michigan game the following week. Who else will be there for WMU? It'll be my first time back to campus since the 2002 Pitt game, and it'd be nice to see a few familiar faces. Once I know the itinerary, I'll let you know, but the tentative plan is to get there Saturday morning.
That pretty much rounds out my report for today. My last post wasn't even 8 hours ago, but I did want to get back in the habit of writing these before I go to bed. There's not too much on the agenda for Sunday. My mom's friend is having a little party for my mom in the afternoon. If I'm feeling alright, I'll go to that. The Colts play at 4PM, so I'll catch that. I have a legal questionnaire I need to finish, as well as some SSI phone interview preparation (mainly just getting my info together). For the SSI stuff, I'm filing a new claim in case the old one doesn't pan out. There's a chance the new one will get approved before the old one is resolved, so I'd be getting some money sooner. Or it could be another long, painful mess that begins shortly. We'll see.
I was thinking about talking about something else this time, perhaps how I'm so disillusioned by the political process (brought on after watching Real Time with Bill Maher), but now my eyes hurt....grrr...maybe another time.
Happy Sunday, Go Colts, and thanks to all who read and comment :)!
-B
That pretty much rounds out my report for today. My last post wasn't even 8 hours ago, but I did want to get back in the habit of writing these before I go to bed. There's not too much on the agenda for Sunday. My mom's friend is having a little party for my mom in the afternoon. If I'm feeling alright, I'll go to that. The Colts play at 4PM, so I'll catch that. I have a legal questionnaire I need to finish, as well as some SSI phone interview preparation (mainly just getting my info together). For the SSI stuff, I'm filing a new claim in case the old one doesn't pan out. There's a chance the new one will get approved before the old one is resolved, so I'd be getting some money sooner. Or it could be another long, painful mess that begins shortly. We'll see.
I was thinking about talking about something else this time, perhaps how I'm so disillusioned by the political process (brought on after watching Real Time with Bill Maher), but now my eyes hurt....grrr...maybe another time.
Happy Sunday, Go Colts, and thanks to all who read and comment :)!
-B
Saturday, October 2, 2010
The last couple days...
All of the activity I've had the last little while is catching up with me. My sleep is still off because I keep crashing at odd (for me) hours, then getting back up at even odder (again, for me) hours. I'll take it, though. I'd rather feel extra out of it because I did something and had a little fun than the usual feeling like crap just because. It has caused me to be a little less diligent keeping this blog up to date, though. I was hoping to cheat a bit and make an extra entry last time by posting the SSI ruling, but then it took me a couple hours to finish it after finding some OCR mistakes and adding my response to the nonsense that the judge wrote. But you're not rid of me yet.... ;)
On top of the usual stuff, and the sleep craziness, I've been extra congested. I hate not being able to breathe out of my nose (not that anyone enjoys it). I've gone on sneezing fits, too, which is rare for me, and my nose keeps bleeding. The extra low humidity recently didn't help. I'm glad it rained today. But the overall changing of weather seems to be getting to me. Or it's just one of those things that happens. The breathing difficulties make the wooziness worse because I'm already lightheaded, then get moreso when I have to work harder to inhale. It's hard to get comfortable to sleep and harder to stay in a position that suits me. Ugh...and so it goes.
I've still gotten out of the house, though. I had (psych) therapy on Thursday. I like how that's going. My therapist is a good guy and a Notre Dame fan, which doesn't hurt. It's nice to feel validated about how I interpret my situation. He gets me to think about things, too, that I may not otherwise want to or maybe just wouldn't have had them come to mind. My step-dad dropped me off, but I had to take the bus back home. Of course, it was late. I hate just standing around waiting. Indy needs to do better with public transportation, but that's not going to happen for awhile, it seems. We'll be lucky if IndyGo (the bus system) doesn't cut back (more) services.
I was up early because of one of my crash naps, and should have gone back to bed for at least a few hours before heading to therapy, but didn't. I started crashing again in the waiting room. Then, after, I had to cook for myself (not complaining about that, btw), and I was hungry, so I couldn't really nap. I saw a friend tweet about a promotion by Scotty's Brewhouse to win tickets to see The Social Network. I copied/pasted his posts (as part of the contest) before I even knew what the deal was and ended up winning (as did a couple hundred people, including my friend). The show was at midnight on Thursday and I was afraid I maybe wouldn't make it. I felt a little better after I ate, then took a quick cat nap while I waited to hear that my friend was on her way to pick me up. That helped, and I was refreshed enough to go, though I was still tired.
The theatre was way up in Noblesville, but it was an easy drive. Having no traffic helped. They showed a silly spoof trailer with people from the restaurant and some local personalities before the movie. I enjoyed it. The movie, itself, was pretty good, too. It was funnier than I expected it to be, but maybe a little less accurate than I anticipated. It's not a documentary, though, and it was entertaining. For those less in the loop about how Facebook was formed and grew, they might think things happened just as they did in the movie, which is maybe a little unfortunate. I don't get the sense that Mark Zuckerberg is that emotionless or friendless in real life. He came off as almost autistic in the movie. It was a good time, though, getting out of the house, hanging with a friend, and catching a flick (for free).
I got home and crashed not long after. There were some fights on, both Bellator and the WEC, but I had to miss them because of the movie. Bellator was delayed until the weekend locally, anyway, because of baseball. So I stayed away from Twitter and sports sites until I could watch the fights on Friday. The WEC card was very entertaining. I enjoyed the action quite a bit. Jose Aldo is ridiculous. The Bellator card was less exciting, but I had a good time watching.
I met a friend downtown Friday afternoon. We became acquainted online a little while ago and this was the first time saw each other in person. She just moved to Indy. It was nice out, and we had a good chat over some tea and then lunch. She's had her own health issues, so we could relate to each other on that level. We talked a bit about what's going on that way, but didn't dwell on it too much because we both know how much of a drag that can be (and not that I mind talking about it with people who care--it's just not the most fun thing in the world to do). We talked about Indy and what it has to offer, and about how she's settling in and all that. I had a good time and it'll be cool to hang out again soon. I hope I'm a good guide to the city.
I napped for a couple hours after I got home and caught up on Twitter and all that, getting up to eat the pizza that we ordered. Then I worked on the SSI post, which was only supposed to take a few minutes. It's ridiculous how long it took me to get it formatted, but I it worked out. I chatted a bit once that was done, then my eyes started to bug me. Part of it is from being out in the bright sun for awhile, some from the reading/writing of the blog post, a bit from the lack of sleep, and, too, from the cooler, dryer weather. I had to cut the chatting short and went to bed. Again, I planned on just sleeping a couple hours, then getting up to shower and all that before going to bed for good. But that didn't work out and I've been up since 9AM or so. I wanted to eat and shower and then go back to bed for awhile, but then I got too woozy to shower, then wasn't tired, then got into catching up on TV that I'd missed. And now, here I am, writing this as I wait for the ND/BC game to start.
It's been a crazy couple weeks with doctor appointments, the UFC, being a little sick, and hanging with friends. The discomfort is worth it, though. I never really feel good, anyway, and if I feel a little extra bad, it's much easier to take after having had a little fun. For anyone thinking, "Well, why can't he work, then?" it's not the same thing. While it's been a lot for me, it's still only been a few hours spread out over a few days, and I wasn't doing anything productive. I almost passed out at the UFC Pre Fight Press Conference last week and I came close to not being able to make it to the movie or to meet my friend on Friday. And, for the most part, I was just sitting around, talking. But I still enjoyed it.
GO IRISH! BEAT EAGLES!
-B
On top of the usual stuff, and the sleep craziness, I've been extra congested. I hate not being able to breathe out of my nose (not that anyone enjoys it). I've gone on sneezing fits, too, which is rare for me, and my nose keeps bleeding. The extra low humidity recently didn't help. I'm glad it rained today. But the overall changing of weather seems to be getting to me. Or it's just one of those things that happens. The breathing difficulties make the wooziness worse because I'm already lightheaded, then get moreso when I have to work harder to inhale. It's hard to get comfortable to sleep and harder to stay in a position that suits me. Ugh...and so it goes.
I've still gotten out of the house, though. I had (psych) therapy on Thursday. I like how that's going. My therapist is a good guy and a Notre Dame fan, which doesn't hurt. It's nice to feel validated about how I interpret my situation. He gets me to think about things, too, that I may not otherwise want to or maybe just wouldn't have had them come to mind. My step-dad dropped me off, but I had to take the bus back home. Of course, it was late. I hate just standing around waiting. Indy needs to do better with public transportation, but that's not going to happen for awhile, it seems. We'll be lucky if IndyGo (the bus system) doesn't cut back (more) services.
I was up early because of one of my crash naps, and should have gone back to bed for at least a few hours before heading to therapy, but didn't. I started crashing again in the waiting room. Then, after, I had to cook for myself (not complaining about that, btw), and I was hungry, so I couldn't really nap. I saw a friend tweet about a promotion by Scotty's Brewhouse to win tickets to see The Social Network. I copied/pasted his posts (as part of the contest) before I even knew what the deal was and ended up winning (as did a couple hundred people, including my friend). The show was at midnight on Thursday and I was afraid I maybe wouldn't make it. I felt a little better after I ate, then took a quick cat nap while I waited to hear that my friend was on her way to pick me up. That helped, and I was refreshed enough to go, though I was still tired.
The theatre was way up in Noblesville, but it was an easy drive. Having no traffic helped. They showed a silly spoof trailer with people from the restaurant and some local personalities before the movie. I enjoyed it. The movie, itself, was pretty good, too. It was funnier than I expected it to be, but maybe a little less accurate than I anticipated. It's not a documentary, though, and it was entertaining. For those less in the loop about how Facebook was formed and grew, they might think things happened just as they did in the movie, which is maybe a little unfortunate. I don't get the sense that Mark Zuckerberg is that emotionless or friendless in real life. He came off as almost autistic in the movie. It was a good time, though, getting out of the house, hanging with a friend, and catching a flick (for free).
I got home and crashed not long after. There were some fights on, both Bellator and the WEC, but I had to miss them because of the movie. Bellator was delayed until the weekend locally, anyway, because of baseball. So I stayed away from Twitter and sports sites until I could watch the fights on Friday. The WEC card was very entertaining. I enjoyed the action quite a bit. Jose Aldo is ridiculous. The Bellator card was less exciting, but I had a good time watching.
I met a friend downtown Friday afternoon. We became acquainted online a little while ago and this was the first time saw each other in person. She just moved to Indy. It was nice out, and we had a good chat over some tea and then lunch. She's had her own health issues, so we could relate to each other on that level. We talked a bit about what's going on that way, but didn't dwell on it too much because we both know how much of a drag that can be (and not that I mind talking about it with people who care--it's just not the most fun thing in the world to do). We talked about Indy and what it has to offer, and about how she's settling in and all that. I had a good time and it'll be cool to hang out again soon. I hope I'm a good guide to the city.
I napped for a couple hours after I got home and caught up on Twitter and all that, getting up to eat the pizza that we ordered. Then I worked on the SSI post, which was only supposed to take a few minutes. It's ridiculous how long it took me to get it formatted, but I it worked out. I chatted a bit once that was done, then my eyes started to bug me. Part of it is from being out in the bright sun for awhile, some from the reading/writing of the blog post, a bit from the lack of sleep, and, too, from the cooler, dryer weather. I had to cut the chatting short and went to bed. Again, I planned on just sleeping a couple hours, then getting up to shower and all that before going to bed for good. But that didn't work out and I've been up since 9AM or so. I wanted to eat and shower and then go back to bed for awhile, but then I got too woozy to shower, then wasn't tired, then got into catching up on TV that I'd missed. And now, here I am, writing this as I wait for the ND/BC game to start.
It's been a crazy couple weeks with doctor appointments, the UFC, being a little sick, and hanging with friends. The discomfort is worth it, though. I never really feel good, anyway, and if I feel a little extra bad, it's much easier to take after having had a little fun. For anyone thinking, "Well, why can't he work, then?" it's not the same thing. While it's been a lot for me, it's still only been a few hours spread out over a few days, and I wasn't doing anything productive. I almost passed out at the UFC Pre Fight Press Conference last week and I came close to not being able to make it to the movie or to meet my friend on Friday. And, for the most part, I was just sitting around, talking. But I still enjoyed it.
GO IRISH! BEAT EAGLES!
-B
Thursday, September 30, 2010
Dealing with the social impact of being sick...
So last time I touched on how I've had my eye issues for half my life. I got into what happened, how it started, how I felt, and some of how it's affected me. I'll expand on that a little this time, focusing on how things have changed socially.
As I mentioned before, it hasn't been much of an issue with my family (and not in a good way, mostly). They're just used to me wearing the visor and shades when I'm out and know that I see the ophthalmologist regularly. I missed more school when they were bugging me extra. They've never really made any accommodations for me, so we argue about lighting a lot. Usually, I'll just end up in my room where I can control it.
They know that something's wrong, but I don't think anyone of them get how serious it. I doubt any of them can tell you what it is. None would get anything close to macular serpiginous chorioretinitis, and I'd be surprised if they mentioned the retina. Blind spots would probably be mentioned, so I guess that's something. The light sensitivity is easy, so they are awarded no points for that. At least with my parents, you'd think they knew what something I've had half my life is called, or at least had the basics down. Before they found the tumor, my mom accused me of faking being sick because I'd done it soooo many times before. Of course, she couldn't give ONE example because that's a bullshit statement. Was I faking the wooziness like I faked going blind? Actually, yes, since both are real. As part of that argument, they said that they don't know anything because I won't tell them what the doctors say. Again, that's not true. I'd tell them, then they wouldn't listen or pay attention. And, no, I'm not taking my mom with me into any doctor appointments. I'm a grown man and she can trust me when I relay what the doctors say (despite her beyond ridiculous claims, she has no reason not to believe me) or she can choose not to take my word for it.
As part of my case that they didn't care enough to listen, pay attention, or remember, I asked them what was wrong with my eyes. They should have known about that, but the only part they got right was mentioning blind spots, and that was almost a lucky guess. They weren't sure about that. I've had this going on since I was 15, mind you. It's never gotten better and it's always been an issue since then. Hell, when I was still a kid, my mom did go to most of the appointments with me, so she heard it all first hand. She'll cry some shit that her liver issues affect her memory and all that, which is true, but something this important gets forgotten? What's my step-dad's excuse? As for my biological dad, I have no clue what he knows or thinks he knows about my eyes.
When my eyes messed up, a lot changed for me. I used to run around all day everyday. I was rarely home. I was either at school, playing sports, or hanging with friends. I didn't watch much TV, other than sports. The only show that I made a point to watch before my eyes went bad was The X Files. I was one of the smartest kids in my class and was recognized as such. I did very well in school, and it was pretty easy for me. That's not to say that I didn't work hard at it, but it all came very naturally. There was nothing that I couldn't understand or work out if I studied it hard enough. Being smart was part of my identity.
But after having to deal with not being able to see as well, and having the light sensitivity, and just having bad days when it was uncomfortable to have my eyes open, things were different. I couldn't play outside as much because of the light. On bad days, I couldn't do much of anything. I was depressed going through it all, so I didn't even want to go out a lot of the time. Even though I couldn't really see everything, I started watching more TV since I was inside more and didn't have anything else to do. School was much harder. I'd go days or weeks without being able to read. I was absent a lot. When I was in class, I was so far behind that it was almost pointless to be there. It was frustrating because I knew I could do the work, I just had to be able to use my eyes to see it. I was less social, frustrated with my limitations.
I lost all of the momentum I had playing sports. I lost that part of my identity, too. I didn't play football junior year because of headaches that were most likely related to the stress of dealing with my eyes. Too, I was still figuring out how to deal with my limited sight and the issues with light, etc. I ended up being the camera man that year. It was nice to still be a part of the team, but it wasn't the same. We had a lot of new players, many from the 2 high schools that closed the previous year. I didn't get the respect I deserved from most of them because I was just the cameraman and not a player. I kinda/sorta ran track again, but I was never in great shape because I couldn't run frequently. I became more of a student manager and would just hang out at practice so I wouldn't have to be home.
I was lucky at school because my teachers all worked with me. My friends helped a lot, too, letting me borrow their notes and working with me to catch me up. They knew me from before--I wasn't just being lazy. It was still hard, them not knowing what to say or what to do and me being just as lost for words. I think a few of my classmates resented, or at least didn't like, the special treatment I got. That irked me quite a bit at the time, but they just didn't realize how bad things were. It's a hard thing to quantify (which hasn't helped me with my SSI stuff). People didn't understand that feeling OK enough to play basketball wasn't the same as being able to read and write. Being active, playing ball, running around...those were the only things that helped me keep my mind off of how bad I felt. Exercising felt good, too, made me tired, helped me sleep. My vision wasn't as much of an issue playing sports. It didn't matter if I couldn't see the basket, I knew where it was, it was intinctual.
It was different in college. I'd known most of my high school friends for awhile, many from junior high. People knew me, knew what I was capable of, and saw that a major change was forced upon me. I came into college as the visor and shades guy. I knew no one, having only spoken to my roommate (who was from Rhode Island) on the phone to sort out what we'd bring for our dorm room. They only saw that I missed a lot of class and that I was in bed a lot. They didn't know how smart I really was, despite being admitted into such a prestigous school. I wasn't a legacy kid and I didn't buy my way in--I earned it. But they never saw me without limitations and just assumed.
It was hard because I couldn't do much to show them my potential, how smart and creative I was, and what I good student I could be. They only saw that I hung around the dorm a lot, wearing the visor, missing class, dropping classes, and just getting by. If they had only known me before, when I didn't have to work so hard, but when I could work as hard as I wanted...if they only knew how smart I had to be to do as well as I did, learning how to do problems while I was taking the test since I couldn't study before and just ran out of time...If only they could see my tears almost every day, sad, frustrated, depressed, feeling like a waste and a failure, wondering if I should drop out of school...
It hurt every time I missed class, had to ask for an extension, dropped a class, or let my group down. I both loved and hated group projects. There were the benefits of being able to rely on my group, but then there was that sinking feeling when I couldn't carry my own weight, bringing them down forcing them to work harder. It's much easier to disappoint only myself in that way.
It hurts that so many people just thought I was lazy. Despite how it may have seemed, I took school very seriously. You can only do what you can do, though. It was unnerving being looked down upon, like maybe I didn't belong. I didn't understand why I didn't get the benefit of the doubt more after explaining my situation. School gets extremely difficult when you're unable to read anything significant for weeks at a time. Skimming websites isn't the same as reading for comprehension and really trying to learn complex concepts.
A lot of that perceived laziness carried over after graduation when I got woozy. "Here he goes faking/exaggerating again." "Why won't he just man up and do the work?" Isn't it something that I was happy that they found a tumor in my head, if only to be a FUCK YOU to those people? I shouldn't have needed that validation. I'm not lazy. I don't mooch. And despite absolutely loving helping others, I hate asking for help even more. It kills me to need special consideration. I can't stand just sitting around, doing nothing, but when you feel as constantly bad as I do and as I have, from my eyes, from the wooziness, that's just how it is. I'm not content staying put, either, I try things that might help. I've tested different technologies, different glasses, different therapies and most of them haven't worked for me. I don't enjoy my situation. I never have. I'd much rather be a productive person, working, helping people. I'm tired of merely surviving, hoping that doctors will find a way to heal me. And I do scream and yell and cry--it does bother me. I just try not to do it around others too much. Why should I make the time that I'm spending with someone else unpleasant? Why can't we just enjoy each other's company? Why can't I be happy that I'm not alone for awhile?
I've missed out on fun stuff, too. I've had to cancel with friends. I've missed birthday parties, family get togethers, and important events like funerals. I wasn't able to attend fun outings on campus many times. My eyes forced me to call into work, costing me money. Being sick, with both my eyes and the wooziness, hasn't just been a convenient excuse to be lazy and only manifests itself when I want to get out of doing something. It is that bad. It is that constant. And it really does suck.
More than dealing with the physical issues--and not that going through all of them is easy--is coping with the social problems. I have so many limitations that are legitimate, then I have those placed upon me by the perception that things maybe aren't as bad as I make them out to be. Being alone and lonely (alonely, I call it) is the worst feeling in the world. It hurts more knowing that I'm a good person with a lot to offer, but that I'm just held back by all of this shit that's out of my control. I don't understand what I've done to taint my word. I'm not a liar. I'm not a faker. I'm not one to exaggerate a lot. I'm not always right, but I am always true. Why isn't that enough?
Things are better now than they have been. Most people at least believe that something's going on with me. I still don't think that everyone understands just how serious and constant and frustrating dealing with all of this has been, but it's a start. I appreciate the support that I've gotten so much that I'll never have the right words to express my exact sentiments. It's still hard going through this, but it's easier when I feel connected to the world, to you guys, and when I have a reason to fight. Please stick with me as I work on being able to stand on my own. Know, too, that I'm here for you. :)
Thanks for your time and I'll try to be more upbeat in the future ;).
-B
As I mentioned before, it hasn't been much of an issue with my family (and not in a good way, mostly). They're just used to me wearing the visor and shades when I'm out and know that I see the ophthalmologist regularly. I missed more school when they were bugging me extra. They've never really made any accommodations for me, so we argue about lighting a lot. Usually, I'll just end up in my room where I can control it.
They know that something's wrong, but I don't think anyone of them get how serious it. I doubt any of them can tell you what it is. None would get anything close to macular serpiginous chorioretinitis, and I'd be surprised if they mentioned the retina. Blind spots would probably be mentioned, so I guess that's something. The light sensitivity is easy, so they are awarded no points for that. At least with my parents, you'd think they knew what something I've had half my life is called, or at least had the basics down. Before they found the tumor, my mom accused me of faking being sick because I'd done it soooo many times before. Of course, she couldn't give ONE example because that's a bullshit statement. Was I faking the wooziness like I faked going blind? Actually, yes, since both are real. As part of that argument, they said that they don't know anything because I won't tell them what the doctors say. Again, that's not true. I'd tell them, then they wouldn't listen or pay attention. And, no, I'm not taking my mom with me into any doctor appointments. I'm a grown man and she can trust me when I relay what the doctors say (despite her beyond ridiculous claims, she has no reason not to believe me) or she can choose not to take my word for it.
As part of my case that they didn't care enough to listen, pay attention, or remember, I asked them what was wrong with my eyes. They should have known about that, but the only part they got right was mentioning blind spots, and that was almost a lucky guess. They weren't sure about that. I've had this going on since I was 15, mind you. It's never gotten better and it's always been an issue since then. Hell, when I was still a kid, my mom did go to most of the appointments with me, so she heard it all first hand. She'll cry some shit that her liver issues affect her memory and all that, which is true, but something this important gets forgotten? What's my step-dad's excuse? As for my biological dad, I have no clue what he knows or thinks he knows about my eyes.
When my eyes messed up, a lot changed for me. I used to run around all day everyday. I was rarely home. I was either at school, playing sports, or hanging with friends. I didn't watch much TV, other than sports. The only show that I made a point to watch before my eyes went bad was The X Files. I was one of the smartest kids in my class and was recognized as such. I did very well in school, and it was pretty easy for me. That's not to say that I didn't work hard at it, but it all came very naturally. There was nothing that I couldn't understand or work out if I studied it hard enough. Being smart was part of my identity.
But after having to deal with not being able to see as well, and having the light sensitivity, and just having bad days when it was uncomfortable to have my eyes open, things were different. I couldn't play outside as much because of the light. On bad days, I couldn't do much of anything. I was depressed going through it all, so I didn't even want to go out a lot of the time. Even though I couldn't really see everything, I started watching more TV since I was inside more and didn't have anything else to do. School was much harder. I'd go days or weeks without being able to read. I was absent a lot. When I was in class, I was so far behind that it was almost pointless to be there. It was frustrating because I knew I could do the work, I just had to be able to use my eyes to see it. I was less social, frustrated with my limitations.
I lost all of the momentum I had playing sports. I lost that part of my identity, too. I didn't play football junior year because of headaches that were most likely related to the stress of dealing with my eyes. Too, I was still figuring out how to deal with my limited sight and the issues with light, etc. I ended up being the camera man that year. It was nice to still be a part of the team, but it wasn't the same. We had a lot of new players, many from the 2 high schools that closed the previous year. I didn't get the respect I deserved from most of them because I was just the cameraman and not a player. I kinda/sorta ran track again, but I was never in great shape because I couldn't run frequently. I became more of a student manager and would just hang out at practice so I wouldn't have to be home.
I was lucky at school because my teachers all worked with me. My friends helped a lot, too, letting me borrow their notes and working with me to catch me up. They knew me from before--I wasn't just being lazy. It was still hard, them not knowing what to say or what to do and me being just as lost for words. I think a few of my classmates resented, or at least didn't like, the special treatment I got. That irked me quite a bit at the time, but they just didn't realize how bad things were. It's a hard thing to quantify (which hasn't helped me with my SSI stuff). People didn't understand that feeling OK enough to play basketball wasn't the same as being able to read and write. Being active, playing ball, running around...those were the only things that helped me keep my mind off of how bad I felt. Exercising felt good, too, made me tired, helped me sleep. My vision wasn't as much of an issue playing sports. It didn't matter if I couldn't see the basket, I knew where it was, it was intinctual.
It was different in college. I'd known most of my high school friends for awhile, many from junior high. People knew me, knew what I was capable of, and saw that a major change was forced upon me. I came into college as the visor and shades guy. I knew no one, having only spoken to my roommate (who was from Rhode Island) on the phone to sort out what we'd bring for our dorm room. They only saw that I missed a lot of class and that I was in bed a lot. They didn't know how smart I really was, despite being admitted into such a prestigous school. I wasn't a legacy kid and I didn't buy my way in--I earned it. But they never saw me without limitations and just assumed.
It was hard because I couldn't do much to show them my potential, how smart and creative I was, and what I good student I could be. They only saw that I hung around the dorm a lot, wearing the visor, missing class, dropping classes, and just getting by. If they had only known me before, when I didn't have to work so hard, but when I could work as hard as I wanted...if they only knew how smart I had to be to do as well as I did, learning how to do problems while I was taking the test since I couldn't study before and just ran out of time...If only they could see my tears almost every day, sad, frustrated, depressed, feeling like a waste and a failure, wondering if I should drop out of school...
It hurt every time I missed class, had to ask for an extension, dropped a class, or let my group down. I both loved and hated group projects. There were the benefits of being able to rely on my group, but then there was that sinking feeling when I couldn't carry my own weight, bringing them down forcing them to work harder. It's much easier to disappoint only myself in that way.
It hurts that so many people just thought I was lazy. Despite how it may have seemed, I took school very seriously. You can only do what you can do, though. It was unnerving being looked down upon, like maybe I didn't belong. I didn't understand why I didn't get the benefit of the doubt more after explaining my situation. School gets extremely difficult when you're unable to read anything significant for weeks at a time. Skimming websites isn't the same as reading for comprehension and really trying to learn complex concepts.
A lot of that perceived laziness carried over after graduation when I got woozy. "Here he goes faking/exaggerating again." "Why won't he just man up and do the work?" Isn't it something that I was happy that they found a tumor in my head, if only to be a FUCK YOU to those people? I shouldn't have needed that validation. I'm not lazy. I don't mooch. And despite absolutely loving helping others, I hate asking for help even more. It kills me to need special consideration. I can't stand just sitting around, doing nothing, but when you feel as constantly bad as I do and as I have, from my eyes, from the wooziness, that's just how it is. I'm not content staying put, either, I try things that might help. I've tested different technologies, different glasses, different therapies and most of them haven't worked for me. I don't enjoy my situation. I never have. I'd much rather be a productive person, working, helping people. I'm tired of merely surviving, hoping that doctors will find a way to heal me. And I do scream and yell and cry--it does bother me. I just try not to do it around others too much. Why should I make the time that I'm spending with someone else unpleasant? Why can't we just enjoy each other's company? Why can't I be happy that I'm not alone for awhile?
I've missed out on fun stuff, too. I've had to cancel with friends. I've missed birthday parties, family get togethers, and important events like funerals. I wasn't able to attend fun outings on campus many times. My eyes forced me to call into work, costing me money. Being sick, with both my eyes and the wooziness, hasn't just been a convenient excuse to be lazy and only manifests itself when I want to get out of doing something. It is that bad. It is that constant. And it really does suck.
More than dealing with the physical issues--and not that going through all of them is easy--is coping with the social problems. I have so many limitations that are legitimate, then I have those placed upon me by the perception that things maybe aren't as bad as I make them out to be. Being alone and lonely (alonely, I call it) is the worst feeling in the world. It hurts more knowing that I'm a good person with a lot to offer, but that I'm just held back by all of this shit that's out of my control. I don't understand what I've done to taint my word. I'm not a liar. I'm not a faker. I'm not one to exaggerate a lot. I'm not always right, but I am always true. Why isn't that enough?
Things are better now than they have been. Most people at least believe that something's going on with me. I still don't think that everyone understands just how serious and constant and frustrating dealing with all of this has been, but it's a start. I appreciate the support that I've gotten so much that I'll never have the right words to express my exact sentiments. It's still hard going through this, but it's easier when I feel connected to the world, to you guys, and when I have a reason to fight. Please stick with me as I work on being able to stand on my own. Know, too, that I'm here for you. :)
Thanks for your time and I'll try to be more upbeat in the future ;).
-B
Wednesday, September 29, 2010
Half my life...
I have been visually impaired for exactly half of my life on Tuesday, September 28, 2010 (thanks to http://www.timeanddate.com/ for the calculations). I was 15 years, 11 months, 4 days or 5817 days old on Tuesday, October 25, 1994, the day I first detected something wrong with my vision. Initially, I just saw some floaters, little specks that moved around. I didn't think too much of it. I was at football practice and maybe I just got some dirt in my eye. It was more distracting and annoying than restrictive, so I didn't think much of it. I don't remember seeing them as much during the school the next day, but they were definitely there during football practice again. Too, there were spots where I couldn’t see and my vision was becoming blurry. I talked to the athletic trainer (who was also an assistant coach), and he recommended some Visine, thinking, as I did the day before, that I'd just gotten some dirt or something in my eyes.
I didn’t think too much of it, expecting it to be gone by morning. School was out Thursday and Friday, but I still had to go to practice. The spots got bigger and and the blurring started getting worse and I began to worry. I told my mom that maybe something was wrong and that I wanted to go to the doctor. We had neither medical insurance, a car, nor enough money to pay the hospital bill, so she told me to wait a few days and see what happened. "Maybe it will go away," she said. I was worried and really wanted to go, but I decided not to push it--yet. We rented some videos that night, and that’s when I got scared. I couldn’t see what was on the television screen--the blind spots were in the way. I had to focus on the corner of the screen to see the middle of it.
We had a game that Friday night, the second round of the Indiana High School playoffs. It was the first time my school had made it past the first round in long while. We were pumped. We knew most of the guys on the other team because the majority of them were bused out of our school district. Our starting quarterback had been banged up for the latter half of the season and got hurt early in the second half. The back-up was absolutely hammered on his first play and was slow to get up. Due to injury, I had been the second string QB for most of the season, but I was third for this game. I was accustomed to being ready to go in, but I feared that if I were to play, I would not be able to perform. I was a quarterback and I wouldn’t have been able to see the receivers, and we needed to throw. Fortunately, I did not have to play. We were cheated by the officials and lost the game, but that’s another story.
I got more and more panicked as my vision deteriorated. I argued with my mom that I needed to go to the hospital. She finally took me just to shut me up. My aunt lived a couple blocks away, so she borrowed her car. Why couldn't she have done this before?! I was told on Saturday that I only had an infection and was given some eyedrops. He made an appointment for Monday with a specialist just to make sure. We went to that consultation on Monday, Halloween, and literally ten different doctors from maybe 6 different countries were called in to look at me. I had no clue as to what was going on. I was eventually told that they thought I had macular serpiginous chorioretinitis (basically, scars on my retinas), but to go see another specialist at the hospital next door. I asked if I was going blind and the doctor said that he didn’t know for sure, so maybe yes. I started crying. I was scared to death.
The next set of doctors confirmed the diagnosis after some further testing and prescribed some prednisone to stop the scarring. They didn’t know if it would work, and if it had not, there was only one other medicine to try. I was even more fearful now. It's a rare condition, especially for my age, and they don't know much about it. There's no known cause and no way to predict if or how much or when it will get worse. It won't get better. I took the medicine for a month and it apparently worked. The active scarring stopped, anyway, and that was the goal. That was good, but damage was already done.
We didn't have a phone, but my grandma lived close by, and we gave her number to the school. One of my teachers left a message for me to call him back on Thursday, wondering why I'd missed 4 days of classes. I explained the situation, and he convinced me to come back to school on Friday. I remember not wanting to be there, on the verge of tears the whole day, not sure what to tell people. My friends and teachers were all nice and supportive, but they had no words, either, other than the standard "hang in there." I probably watched football and slept most of the weekend. I made it back to school on Monday, but it was hard being there, adjusting to a sudden loss of vision, unable to concentrate, not wanting to break down in front of everyone. I missed the rest of the week. The following Monday, I started going to school regularly again.
I turned 16 a couple weeks later. I don't even remember that birthday, but I do know that it was not sweet. Most of us think about getting our driver's licenses and all of the normal teenage stuff. All I could do was wonder if I'd go completely blind. Most of my birthdays were either unremarkable or ruined somehow, but this one especially so.
Before my eyes messed up on me, things were going fairly well. School was good. I enjoyed my classes, was learning a lot, and I was getting good grades, as usual. I liked my prospects playing sports. I was doing alright socially. There wasn't a particular girl I liked, but I was content with that situation and open to possibilities. Things at home were relatively stable. We were still poor, but we were getting by. The heat and lights and water were on. I was happy, for the most part, and looking forward to life. I was confident in myself. I liked who I was and was more comfortable with myself than I ever had been.
Then BOOM! I can't see. Everything is in disarray. How will this affect school? And sports? Friends? Why did I have to argue for 3 days to go to the doctor? Why wouldn't my mom accommodate me after? How hard is it to turn on the end table lamp instead of the overhead light? Would any girl ever want me? I wasn't all that lucky in the romance department when I didn't have anything physically wrong with me, and now I'm going blind. Who would want to deal with that? Will I be able to drive? How am I going to get out of here? Is it going to get worse? If so when? What am I going to do then? Who's going to take care of me? How long before I can take care of myself? What about school then? College? What did I do wrong, why is this happening to me?
I figured out the light sensitivity pretty quickly, though it took awhile to figure out what to do about it. Glare bothers me quite a bit, especially from overhead. I had to carry around a note from my doctor so I could where my hat at school. That was a pain, showing it to teachers I didn't know. I experimented with several different kinds of glasses. I was already a little a nearsighted, and had some spectacles for that. I tried different shades of clip on accessories, dark for outside, yellow for inside to reduce glare. I got new, transition lens bifocals, hoping that magnification would help me see when reading. It took a couple days to get used to those and I almost fell down the stairs a few times. None of those ended up working and I ended up settling on sunglasses most of the time. The hat turned into a visor at the end of HS. The brim is wider, and it leaves my head open, keeping it cooler.
The biggest issues are with reading. The print has to be big enough or the blind spots make it impossible to see. Since my eyes have to work harder, they tire more quickly and once they're done, they're done for awhile. The weather affects them--they don't do well in the dry cold. Lack of sleep hurts, and I've never slept well. The more I'd use my eyes (mainly reading), the worse they'd feel. There's an accumulation effect. It was harder to see the chalk board in class. We ended up getting worksheets and assignments blown up into larger print. My books were copied to be made larger. I was given extensions to complete assignments. All of my teachers were really cool and worked with me. I tried taping lectures and listening to books on tape, but those didn't help. I just fell asleep. It finally came down to "I'll get to it when I can get to it." I was lucky to have the support that I had at school. I was accommodated very well in college, for the most part, too, and I'm appreciative of that.
That's not to say that it was easy. I had always done well in school; it came naturally to me. I never really had to study much, and when I did, I could and did wait until the last minute. I still did well, though. My study habits had to change considerably after all of this. I could no longer do the work when I wanted to do it, rather, I had to do it when I physically feel like it. I had to stop in the middle of assignments, ruining the flow. I'd fall behind because I could’t things when they were assigned. It was rather difficult to function “normally” in class. I was often unable to take notes, forced to rely on my memory a great deal more. My junior year of high school, I did over a semester’s worth of calculus work, some sixty tests and quizzes, in two weeks. I did about the equivalent amount of work for my AP English class senior year. It only got harder in college with more challenging courses.
Macular serpiginous chorioretinitis
= scars on retinas = blind spots
*Rare, especially for young age at outset (October, 1994)
*Not much known, nothing new
*Best guess = auto-immune
*Blind spots in different places -> compensation
-> more work -> strain
*Strain -> discomfort/pain -> stop reading & rest
-> academic/work issues
*Light 'charges' scars, making them completely prevalent
in each eye (much like toy glow in the dark stars)
*More light (intensity, frequency, duration)
-> less/no compensation -> harder work
*Bright flashes (e.g. cameras) are worse short term
(minutes to hours)
*Long exposure to bright light is worse longer term
(hours to days)
*Left eye scar is more central, blind spot worse
Right eye got worse
*Was stable since original scarring until July, 2008
*Similar symptoms as 1994
*Scar is now bigger/more central in right eye
*Blind spots overlap more = less compensation
= more loss of vision
*Still getting used to new spot - seeing flashes
*Stable now - could get worse again whenever
My eyes are still an issue, but they haven't specifically bugged me much lately. I do have to take breaks from messing around on the computer and from watching TV, but the wooziness usually gets to me before my eyes do. I have to move my eyes/head around a bit to see what I'm looking at, and that motion gets me woozy. My eyes are worse in winter with the cold and lack of moisture. The eye stuff is completely unrelated to the tumor stuff--a separate problem.
The scars had been pretty stable since right after they originally flared up. My right eye got a little worse a couple of summers ago. It was always in the back of my mind that they could get worse, but I suppose I'd become complacent and didn't think too much about that until they did. I wondered if this was it, if I'd completely lose my sight this time. The episode didn't last long and stabilized in the time it took me to get seen by the ophthalmologist. They don't know much more now than they did when I was 15.
Though I'm used to my limitations, it's still scary thinking about the possibility of losing my sight completely. Try to walk down the street with your eyes closed--do not peek--and feel how frightening that is. I do it every once in a while to prepare myself if my condition gets worse. It isn’t easy. The blind spots and impaired vision are always with me. Very often I'll gaze at the alarm clock and think that I forgot to turn it on, but then I get a better angle and realize that the light was just obstructed by the scarring. I'll freak out that I didn't hit the timer button on the VCR (yes, I still use VCRs), but then I'll observe that I just couldn't see that, too. People have to get fairly close to me in order for me to see their faces. Those that I know well are easier to recognize by their gaits and body and clothes. It's hard to read signs in public, or to see the scoreboard at games. Reading things posted on TV is difficult.
I appreciate sight more. I could sit all day and look at the clouds and watch the sun rise and set. I like to see leaves blowing in the trees and falling to the ground. Rain falling is beautiful. Nature is amazing. In most ways, physical beauty isn’t as important nor as impressive, though still admired, only from a new perspective. I love smiles, especially when directed at me, especially when unexpected. Uniqueness is appreciated.
Halloween isn't my favorite holiday. It never was, really. I always found it odd that we were told to stay away from strangers but on one night a year, we could ask them for candy. Being poor, I never had a good costume, either. Being diagnosed with a serious eye condition on that date sealed the deal. I'll still eat the candy, though :). I don't get as depressed as I used to on Halloween. The last couple years, I didn't think about it being an anniversary until after the fact. It'll get me a little this year, I think. It's been half my life...and counting.
My eye stuff has been a big part of the riff between my mom and me. First, I had to argue with her, literally scream and yell, to get her to take me to the doctor. "What? Do you want me to take you to the hospital?" she asked. I guess me saying, "I can't see! I need to go to the hospital!" wasn't clear enough the first thousand times. She still doesn't think she did anything wrong there. It probably wouldn't have saved any of my sight, but still, I WAS FUCKING GOING BLIND!!!! And then she'd make no accommodations whatsoever for me at home. I'd complain, nicely at first, about the light and she'd tell me to wear my hat or glasses. I shouldn't have to wear a hat and sunglasses INSIDE MY OWN HOUSE, especially when it would be very easy just to use alternate lighting. It's bad enough that I have to wear that stuff whenever I'm out of the house, but at home? And she wondered why I spent so much time in my room. 1) I didn't have to wear extra stuff to see, and 2) I didn't have to be around her. This kind of ridiculousness and uncaring has extended to dealing with the tumor stuff, too, but that's for another time.
Wow...now it's been slightly more than half my life I've dealt with this. I've had this longer than I haven't. It'll never go away barring a major medical breakthrough. And it's crazy that something so serious and that dominated so much of my life is now playing second fiddle to something else that's also very rare and even more severe. Even though the wooziness and tumor stuff dictate so much of what I can and can't do, whenever I get too happy or too content, all I have to do is close one eye and look directly at something. It's instantly humbling literally seeing that limitation.
If/when I get better from the tumor and the wooziness, I'll still have my eyes to deal with. Any work I would potentially do would be at the mercy of my eyes. It's been so long that they've been an active problem, it'll take me awhile to re-figure all of that out again. It will still be difficult to get things done on time. Quality will have to be sacrificed just to finish many tasks. I'll still have days when I can't do anything productive. I'll still be handicapped. And I'll still have to worry about my eyes getting worse...without warning...again...
It's been rough and hard and sad and so fucking frustrating. I've always tried to be respectful and caring and empathetic and appreciative, but dealing this has forced me to be so. When you can't do something, when it's physically impossible, when there is no way around it, it's hard not to be humbled. I don't know that I needed humbling. I only accept my limitations as much as I have to. It's still hard to be patient through it all, but I've learned to let go some. Being more aware of how precious and beautiful life and nature can be is nice. I guess that's a silver lining. I would much rather have just had an epiphany: hey, wow, isn't that something?! It is what it is and I'm doing what I do.
Thanks for reading...I'll see you later,
-B
P.S.
Ask me questions, anything, anonymously if you wish at: http://www.formspring.me/visorbrent
I didn’t think too much of it, expecting it to be gone by morning. School was out Thursday and Friday, but I still had to go to practice. The spots got bigger and and the blurring started getting worse and I began to worry. I told my mom that maybe something was wrong and that I wanted to go to the doctor. We had neither medical insurance, a car, nor enough money to pay the hospital bill, so she told me to wait a few days and see what happened. "Maybe it will go away," she said. I was worried and really wanted to go, but I decided not to push it--yet. We rented some videos that night, and that’s when I got scared. I couldn’t see what was on the television screen--the blind spots were in the way. I had to focus on the corner of the screen to see the middle of it.
We had a game that Friday night, the second round of the Indiana High School playoffs. It was the first time my school had made it past the first round in long while. We were pumped. We knew most of the guys on the other team because the majority of them were bused out of our school district. Our starting quarterback had been banged up for the latter half of the season and got hurt early in the second half. The back-up was absolutely hammered on his first play and was slow to get up. Due to injury, I had been the second string QB for most of the season, but I was third for this game. I was accustomed to being ready to go in, but I feared that if I were to play, I would not be able to perform. I was a quarterback and I wouldn’t have been able to see the receivers, and we needed to throw. Fortunately, I did not have to play. We were cheated by the officials and lost the game, but that’s another story.
I got more and more panicked as my vision deteriorated. I argued with my mom that I needed to go to the hospital. She finally took me just to shut me up. My aunt lived a couple blocks away, so she borrowed her car. Why couldn't she have done this before?! I was told on Saturday that I only had an infection and was given some eyedrops. He made an appointment for Monday with a specialist just to make sure. We went to that consultation on Monday, Halloween, and literally ten different doctors from maybe 6 different countries were called in to look at me. I had no clue as to what was going on. I was eventually told that they thought I had macular serpiginous chorioretinitis (basically, scars on my retinas), but to go see another specialist at the hospital next door. I asked if I was going blind and the doctor said that he didn’t know for sure, so maybe yes. I started crying. I was scared to death.
The next set of doctors confirmed the diagnosis after some further testing and prescribed some prednisone to stop the scarring. They didn’t know if it would work, and if it had not, there was only one other medicine to try. I was even more fearful now. It's a rare condition, especially for my age, and they don't know much about it. There's no known cause and no way to predict if or how much or when it will get worse. It won't get better. I took the medicine for a month and it apparently worked. The active scarring stopped, anyway, and that was the goal. That was good, but damage was already done.
We didn't have a phone, but my grandma lived close by, and we gave her number to the school. One of my teachers left a message for me to call him back on Thursday, wondering why I'd missed 4 days of classes. I explained the situation, and he convinced me to come back to school on Friday. I remember not wanting to be there, on the verge of tears the whole day, not sure what to tell people. My friends and teachers were all nice and supportive, but they had no words, either, other than the standard "hang in there." I probably watched football and slept most of the weekend. I made it back to school on Monday, but it was hard being there, adjusting to a sudden loss of vision, unable to concentrate, not wanting to break down in front of everyone. I missed the rest of the week. The following Monday, I started going to school regularly again.
I turned 16 a couple weeks later. I don't even remember that birthday, but I do know that it was not sweet. Most of us think about getting our driver's licenses and all of the normal teenage stuff. All I could do was wonder if I'd go completely blind. Most of my birthdays were either unremarkable or ruined somehow, but this one especially so.
Before my eyes messed up on me, things were going fairly well. School was good. I enjoyed my classes, was learning a lot, and I was getting good grades, as usual. I liked my prospects playing sports. I was doing alright socially. There wasn't a particular girl I liked, but I was content with that situation and open to possibilities. Things at home were relatively stable. We were still poor, but we were getting by. The heat and lights and water were on. I was happy, for the most part, and looking forward to life. I was confident in myself. I liked who I was and was more comfortable with myself than I ever had been.
Then BOOM! I can't see. Everything is in disarray. How will this affect school? And sports? Friends? Why did I have to argue for 3 days to go to the doctor? Why wouldn't my mom accommodate me after? How hard is it to turn on the end table lamp instead of the overhead light? Would any girl ever want me? I wasn't all that lucky in the romance department when I didn't have anything physically wrong with me, and now I'm going blind. Who would want to deal with that? Will I be able to drive? How am I going to get out of here? Is it going to get worse? If so when? What am I going to do then? Who's going to take care of me? How long before I can take care of myself? What about school then? College? What did I do wrong, why is this happening to me?
I figured out the light sensitivity pretty quickly, though it took awhile to figure out what to do about it. Glare bothers me quite a bit, especially from overhead. I had to carry around a note from my doctor so I could where my hat at school. That was a pain, showing it to teachers I didn't know. I experimented with several different kinds of glasses. I was already a little a nearsighted, and had some spectacles for that. I tried different shades of clip on accessories, dark for outside, yellow for inside to reduce glare. I got new, transition lens bifocals, hoping that magnification would help me see when reading. It took a couple days to get used to those and I almost fell down the stairs a few times. None of those ended up working and I ended up settling on sunglasses most of the time. The hat turned into a visor at the end of HS. The brim is wider, and it leaves my head open, keeping it cooler.
The biggest issues are with reading. The print has to be big enough or the blind spots make it impossible to see. Since my eyes have to work harder, they tire more quickly and once they're done, they're done for awhile. The weather affects them--they don't do well in the dry cold. Lack of sleep hurts, and I've never slept well. The more I'd use my eyes (mainly reading), the worse they'd feel. There's an accumulation effect. It was harder to see the chalk board in class. We ended up getting worksheets and assignments blown up into larger print. My books were copied to be made larger. I was given extensions to complete assignments. All of my teachers were really cool and worked with me. I tried taping lectures and listening to books on tape, but those didn't help. I just fell asleep. It finally came down to "I'll get to it when I can get to it." I was lucky to have the support that I had at school. I was accommodated very well in college, for the most part, too, and I'm appreciative of that.
That's not to say that it was easy. I had always done well in school; it came naturally to me. I never really had to study much, and when I did, I could and did wait until the last minute. I still did well, though. My study habits had to change considerably after all of this. I could no longer do the work when I wanted to do it, rather, I had to do it when I physically feel like it. I had to stop in the middle of assignments, ruining the flow. I'd fall behind because I could’t things when they were assigned. It was rather difficult to function “normally” in class. I was often unable to take notes, forced to rely on my memory a great deal more. My junior year of high school, I did over a semester’s worth of calculus work, some sixty tests and quizzes, in two weeks. I did about the equivalent amount of work for my AP English class senior year. It only got harder in college with more challenging courses.
Macular serpiginous chorioretinitis
= scars on retinas = blind spots
*Rare, especially for young age at outset (October, 1994)
*Not much known, nothing new
*Best guess = auto-immune
*Blind spots in different places -> compensation
-> more work -> strain
*Strain -> discomfort/pain -> stop reading & rest
-> academic/work issues
*Light 'charges' scars, making them completely prevalent
in each eye (much like toy glow in the dark stars)
*More light (intensity, frequency, duration)
-> less/no compensation -> harder work
*Bright flashes (e.g. cameras) are worse short term
(minutes to hours)
*Long exposure to bright light is worse longer term
(hours to days)
*Left eye scar is more central, blind spot worse
Right eye got worse
*Was stable since original scarring until July, 2008
*Similar symptoms as 1994
*Scar is now bigger/more central in right eye
*Blind spots overlap more = less compensation
= more loss of vision
*Still getting used to new spot - seeing flashes
*Stable now - could get worse again whenever
.jpg) |
| My Retinas (8-19-08) |
.jpg){kind=link}
My eyes are still an issue, but they haven't specifically bugged me much lately. I do have to take breaks from messing around on the computer and from watching TV, but the wooziness usually gets to me before my eyes do. I have to move my eyes/head around a bit to see what I'm looking at, and that motion gets me woozy. My eyes are worse in winter with the cold and lack of moisture. The eye stuff is completely unrelated to the tumor stuff--a separate problem.
The scars had been pretty stable since right after they originally flared up. My right eye got a little worse a couple of summers ago. It was always in the back of my mind that they could get worse, but I suppose I'd become complacent and didn't think too much about that until they did. I wondered if this was it, if I'd completely lose my sight this time. The episode didn't last long and stabilized in the time it took me to get seen by the ophthalmologist. They don't know much more now than they did when I was 15.
Though I'm used to my limitations, it's still scary thinking about the possibility of losing my sight completely. Try to walk down the street with your eyes closed--do not peek--and feel how frightening that is. I do it every once in a while to prepare myself if my condition gets worse. It isn’t easy. The blind spots and impaired vision are always with me. Very often I'll gaze at the alarm clock and think that I forgot to turn it on, but then I get a better angle and realize that the light was just obstructed by the scarring. I'll freak out that I didn't hit the timer button on the VCR (yes, I still use VCRs), but then I'll observe that I just couldn't see that, too. People have to get fairly close to me in order for me to see their faces. Those that I know well are easier to recognize by their gaits and body and clothes. It's hard to read signs in public, or to see the scoreboard at games. Reading things posted on TV is difficult.
I appreciate sight more. I could sit all day and look at the clouds and watch the sun rise and set. I like to see leaves blowing in the trees and falling to the ground. Rain falling is beautiful. Nature is amazing. In most ways, physical beauty isn’t as important nor as impressive, though still admired, only from a new perspective. I love smiles, especially when directed at me, especially when unexpected. Uniqueness is appreciated.
Halloween isn't my favorite holiday. It never was, really. I always found it odd that we were told to stay away from strangers but on one night a year, we could ask them for candy. Being poor, I never had a good costume, either. Being diagnosed with a serious eye condition on that date sealed the deal. I'll still eat the candy, though :). I don't get as depressed as I used to on Halloween. The last couple years, I didn't think about it being an anniversary until after the fact. It'll get me a little this year, I think. It's been half my life...and counting.
My eye stuff has been a big part of the riff between my mom and me. First, I had to argue with her, literally scream and yell, to get her to take me to the doctor. "What? Do you want me to take you to the hospital?" she asked. I guess me saying, "I can't see! I need to go to the hospital!" wasn't clear enough the first thousand times. She still doesn't think she did anything wrong there. It probably wouldn't have saved any of my sight, but still, I WAS FUCKING GOING BLIND!!!! And then she'd make no accommodations whatsoever for me at home. I'd complain, nicely at first, about the light and she'd tell me to wear my hat or glasses. I shouldn't have to wear a hat and sunglasses INSIDE MY OWN HOUSE, especially when it would be very easy just to use alternate lighting. It's bad enough that I have to wear that stuff whenever I'm out of the house, but at home? And she wondered why I spent so much time in my room. 1) I didn't have to wear extra stuff to see, and 2) I didn't have to be around her. This kind of ridiculousness and uncaring has extended to dealing with the tumor stuff, too, but that's for another time.
Wow...now it's been slightly more than half my life I've dealt with this. I've had this longer than I haven't. It'll never go away barring a major medical breakthrough. And it's crazy that something so serious and that dominated so much of my life is now playing second fiddle to something else that's also very rare and even more severe. Even though the wooziness and tumor stuff dictate so much of what I can and can't do, whenever I get too happy or too content, all I have to do is close one eye and look directly at something. It's instantly humbling literally seeing that limitation.
If/when I get better from the tumor and the wooziness, I'll still have my eyes to deal with. Any work I would potentially do would be at the mercy of my eyes. It's been so long that they've been an active problem, it'll take me awhile to re-figure all of that out again. It will still be difficult to get things done on time. Quality will have to be sacrificed just to finish many tasks. I'll still have days when I can't do anything productive. I'll still be handicapped. And I'll still have to worry about my eyes getting worse...without warning...again...
It's been rough and hard and sad and so fucking frustrating. I've always tried to be respectful and caring and empathetic and appreciative, but dealing this has forced me to be so. When you can't do something, when it's physically impossible, when there is no way around it, it's hard not to be humbled. I don't know that I needed humbling. I only accept my limitations as much as I have to. It's still hard to be patient through it all, but I've learned to let go some. Being more aware of how precious and beautiful life and nature can be is nice. I guess that's a silver lining. I would much rather have just had an epiphany: hey, wow, isn't that something?! It is what it is and I'm doing what I do.
Thanks for reading...I'll see you later,
-B
P.S.
Ask me questions, anything, anonymously if you wish at: http://www.formspring.me/visorbrent
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