I forgot about this blog for awhile, to be honest. A lot has happened since 2014.
Me and my husband moved to Illinois a year ago this month (August 2015), for him to attend graduate school. I work at a pointless job in a local community college. At least it's full-time, so I get benefits. But, it is hard to work a job where nothing you do really matters, and you're forced to answer to people that you don't like. But the point of this blog is not to gripe about my dumb job, right? That's what my other blog is for.
As far as a Dad update, things are steadily going downhill. When I was back home in May, he barely used his walker at all, and relied solely on his wheelchair for getting places. He's losing dexterity in his hands and arms. My mom has to dress him everyday, although he is able to basically get ready himself. Recently, they just got a prescription for a lift to be installed in our house for the days when my mom and him both don't have the energy to get him in/out of bed.
In Mom news, she's in her second year of her Master's program in Educational Leadership, which means instead of being a teacher the rest of her life, she can be a principal. Good news, because even though my dad is still able to work, medical bills can and do pile up. Specialists are not cheap.
Speaking of specialists. my dad has found a new doctor that he really likes. He's in a wheelchair too, due to an accident, so he gets what it's like to be disabled in a world meant for people who can walk. Also, due to my dad's continually decreasing level of physical activity, he will be going to a physical therapist a couple times a week to work on his muscle tone. Since I don't live anywhere close to my family anymore, it's hard to know how things are going, since I only see snapshots when I visit home on holidays.
I have gotten much better about talking about his illness. Not to the point of feeling like I can just throw it out there as a topic for discussion, but when people ask if we plan on staying in Chicago once my husband graduates, I can easily say no, because 1. I hate it here, and 2. if we lived here, my parents would never be able to visit. (People make a big fuss about being handicap friendly, but believe you me, being "handicap friendly" and actually handicap helpful are two completely different matters.) Usually this leads to them asking why, and me simply saying that my father is disabled and it's difficult for him to travel. People won't make a big deal out of things if you won't. I've learned to not show that it affects me, and then people will just move on with other topics of conversation.
I don't know. I guess things are going okay. I still suffer from anxiety on a daily basis, and hate hate HATE social interactions with those in my ward. I feel like nobody really cares about us here. Everyone is too busy having children and doing whatever it is that they do with their time to care about a new couple from Utah.
One last politically incendiary thought - why do people push for transgender bathrooms, and yet hardly anywhere I go has disability bathrooms? Guess what. If you're transgender, cool. Whatever. Do you really need a separate bathroom, when you can just walk in and go like a regular human? Why should we focus on putting transgender bathrooms in public places, when disabled bathrooms are needed much more, and a greater population of the world is disabled than transgender? I hate pandering to people, especially if it isn't necessary. A transgender bathroom isn't necessary. A disabled one is. Period.
I guess getting political isn't really what this blog is meant for. But that has bothered me for a really long time. Thanks for reading. I'm going to try and keep this more updated. I can't be the only one with a relative out there suffering from a degenerative neural condition. Whatever led you here, thanks for reading.
Friday, August 12, 2016
Friday, December 19, 2014
Eight Months Later
It's been awhile. I know nobody ever finds this so no one reads if it but if you were... I'm sorry. Lots has been going on, and not all about my dad. I got married, my parents moved, my cat died, etc. Sounds depressing, right? Let's delve right in.
I'll warn you right now this onslaught of depression is usually reserved for holding inside, but since I've been crying off and on for the past two hours I figured it was time to let go of some of this creatively. Will it help? It has in the past. I hope I make sense. I apologize for any typos, it's hard to see when you're crying and you have contacts so all the salt gets stuck on the lens and... yeah.
Part of my depression comes from the fact that the last four or five months I've been living with worsening anxiety. I don't know why it came out as soon as I got married, but once you're stuck with someone like that it's different than a new roommate, a spouse actually cares about you and can read when you're sad and wants to know why, as opposed to a roommate who just says "whoa, don't talk to her for awhile." So now that I have this nosy person in my life, I can't be as hidden as I used to be, which is extremely hard for me because at my core, I want to suffer alone. I don't want to impose my anxiety or depression on anyone else, it just doesn't seem right. So here I am, bottling it up inside until something big happens and then I can't handle it.
So backstory, my husband is part of a pep band that plays for football games, and he just left about half an hour ago to go to the bowl game in Florida, and won't be back until late Tuesday night. That would probably be hard on anyone (I'm assuming?) but it's especially hard on me. It hurts because I know he's so excited and I feel like Scrooge on Christmas Eve telling Bob Cratchit to suck it up and work, so I just stay quiet in the corner and watch as he packs happily and talks about all of his plans. It hurts more than usual, I think, because once upon a time we were supposed to go on this trip together, as sort of a honeymoon that wasn't actually in Utah. But once we learned I had to pay for my flight ($700+) and half the hotel room and for everything the band got to do for free, it was obvious to this newlywed that it was never going to happen. We barely have enough money in my account to make rent each month, let alone spend next month's rent on a flight alone. We barely have enough to make a Christmas, and it hurts. I'm no stranger to being poor, been poor my whole life. But it's hard when you see the cold hard number in your bank account, telling you "nice try, never going to happen, you're worthless." It's just so hard to see other people get to do things without a care in the world, and people like me struggle to get food on the table each week (although that could have more to do with my lack of cooking ability than my lack of funds...) I mean, I've never been farther east than Billings, Montana. And yes, that is in the West of the United States. My family never had the means to travel for fun when I was younger, and now that I'm married my money doesn't go as far as it used to. I work a sucky part-time job at a place that I hate doing things a well-trained monkey could do. I wake up each day fully intending to control my anxiety, instead of letting it control me. But sometimes, it wins. And tonight it's winning big time. I don't want to be alone, but I don't want to go home. I want him to go and have fun, but I also want him to hate it and return. I want to be the big girl and get up and do something, but I also want to sit here and cry until he comes back. I want to sit down and pop some popcorn and turn on a Hallmark movie, but I also just want to curl up in a ball on the floor. I want to wrap presents to put under our tiny tree, but I also don't want to stress about making them perfect, and I will. I want to finish crocheting my snowflakes, but I don't care. I want to finish my cross-stitch, but I don't care. And I know when Christmas comes and I haven't done everything for everyone I wanted to I'll feel even worse. It's a terrible, vicious cycle. And I want to break it, I do. I just don't feel up to it right now. I can't even force myself.
It's not that I don't have friends around to talk to, I do. I just don't feel like running to them and pretending like everything is okay.
I'd just rather... sit here and cry right now.
Maybe if I can tell you some things that aren't depressing, maybe I'll feel better. Well, my parents moved houses, into one that's much more handicap accessible. He has a motorized wheelchair now, and uses it and the walker exclusively. He works from home now, which has improved his energy. He can't drive anymore, so we got him a handicap van that he can learn to drive around with his hands. He zooms around the house doing laundry, his new appointed job. He helps me make dinner on Mondays after I teach my two little budding pianists. He hurts, though. I can see it. He has a hard time not being around people, because believe it or not, he's a social guy. He likes being around people and hearing their stories, which is hard to do in a home office. And it's not something that can be easily remedied... He has a new friend in the ward, Norm, whom he likes to hang out with sometimes. They went Christmas shopping last Monday, that was fun for him to get out in the world. He likes zooming up and down the neighborhood on good days just for some fresh air. It was actually pretty funny, a few weeks ago we went and got a bolt put on his chair so he can drive the handi-van or something (still unclear on that one) but they put it too low so it would get caught on things and he'd get stuck. So we're putting up Christmas lights and he's zooming around telling us if it looks good or not and all of a sudden he's like "Uhh, guys?" and we look back and he's gotten stuck on the driveway incline, with his wheels spinning like crazy but not being able to move. It was like watching a turtle on its back. It was awful, but also funny. Never fear, the bolt has been fixed and he can now drive around normally.
Ah, that actually made me smile, for the first time in a few hours. It felt...foreign.
I'll start writing on here more often now. I have another fluffy blog I write on just to be funny but this one actually matters to me.
Guess I'll keep on keeping on...
-K
I'll warn you right now this onslaught of depression is usually reserved for holding inside, but since I've been crying off and on for the past two hours I figured it was time to let go of some of this creatively. Will it help? It has in the past. I hope I make sense. I apologize for any typos, it's hard to see when you're crying and you have contacts so all the salt gets stuck on the lens and... yeah.
Part of my depression comes from the fact that the last four or five months I've been living with worsening anxiety. I don't know why it came out as soon as I got married, but once you're stuck with someone like that it's different than a new roommate, a spouse actually cares about you and can read when you're sad and wants to know why, as opposed to a roommate who just says "whoa, don't talk to her for awhile." So now that I have this nosy person in my life, I can't be as hidden as I used to be, which is extremely hard for me because at my core, I want to suffer alone. I don't want to impose my anxiety or depression on anyone else, it just doesn't seem right. So here I am, bottling it up inside until something big happens and then I can't handle it.
So backstory, my husband is part of a pep band that plays for football games, and he just left about half an hour ago to go to the bowl game in Florida, and won't be back until late Tuesday night. That would probably be hard on anyone (I'm assuming?) but it's especially hard on me. It hurts because I know he's so excited and I feel like Scrooge on Christmas Eve telling Bob Cratchit to suck it up and work, so I just stay quiet in the corner and watch as he packs happily and talks about all of his plans. It hurts more than usual, I think, because once upon a time we were supposed to go on this trip together, as sort of a honeymoon that wasn't actually in Utah. But once we learned I had to pay for my flight ($700+) and half the hotel room and for everything the band got to do for free, it was obvious to this newlywed that it was never going to happen. We barely have enough money in my account to make rent each month, let alone spend next month's rent on a flight alone. We barely have enough to make a Christmas, and it hurts. I'm no stranger to being poor, been poor my whole life. But it's hard when you see the cold hard number in your bank account, telling you "nice try, never going to happen, you're worthless." It's just so hard to see other people get to do things without a care in the world, and people like me struggle to get food on the table each week (although that could have more to do with my lack of cooking ability than my lack of funds...) I mean, I've never been farther east than Billings, Montana. And yes, that is in the West of the United States. My family never had the means to travel for fun when I was younger, and now that I'm married my money doesn't go as far as it used to. I work a sucky part-time job at a place that I hate doing things a well-trained monkey could do. I wake up each day fully intending to control my anxiety, instead of letting it control me. But sometimes, it wins. And tonight it's winning big time. I don't want to be alone, but I don't want to go home. I want him to go and have fun, but I also want him to hate it and return. I want to be the big girl and get up and do something, but I also want to sit here and cry until he comes back. I want to sit down and pop some popcorn and turn on a Hallmark movie, but I also just want to curl up in a ball on the floor. I want to wrap presents to put under our tiny tree, but I also don't want to stress about making them perfect, and I will. I want to finish crocheting my snowflakes, but I don't care. I want to finish my cross-stitch, but I don't care. And I know when Christmas comes and I haven't done everything for everyone I wanted to I'll feel even worse. It's a terrible, vicious cycle. And I want to break it, I do. I just don't feel up to it right now. I can't even force myself.
It's not that I don't have friends around to talk to, I do. I just don't feel like running to them and pretending like everything is okay.
I'd just rather... sit here and cry right now.
Maybe if I can tell you some things that aren't depressing, maybe I'll feel better. Well, my parents moved houses, into one that's much more handicap accessible. He has a motorized wheelchair now, and uses it and the walker exclusively. He works from home now, which has improved his energy. He can't drive anymore, so we got him a handicap van that he can learn to drive around with his hands. He zooms around the house doing laundry, his new appointed job. He helps me make dinner on Mondays after I teach my two little budding pianists. He hurts, though. I can see it. He has a hard time not being around people, because believe it or not, he's a social guy. He likes being around people and hearing their stories, which is hard to do in a home office. And it's not something that can be easily remedied... He has a new friend in the ward, Norm, whom he likes to hang out with sometimes. They went Christmas shopping last Monday, that was fun for him to get out in the world. He likes zooming up and down the neighborhood on good days just for some fresh air. It was actually pretty funny, a few weeks ago we went and got a bolt put on his chair so he can drive the handi-van or something (still unclear on that one) but they put it too low so it would get caught on things and he'd get stuck. So we're putting up Christmas lights and he's zooming around telling us if it looks good or not and all of a sudden he's like "Uhh, guys?" and we look back and he's gotten stuck on the driveway incline, with his wheels spinning like crazy but not being able to move. It was like watching a turtle on its back. It was awful, but also funny. Never fear, the bolt has been fixed and he can now drive around normally.
Ah, that actually made me smile, for the first time in a few hours. It felt...foreign.
I'll start writing on here more often now. I have another fluffy blog I write on just to be funny but this one actually matters to me.
Guess I'll keep on keeping on...
-K
Friday, April 25, 2014
A Year Later
One year, guys. I know, don't stone me. But hey, I've had a lot going on. I just finished up my senior year of college, graduated, and got myself engaged. And getting a little better at dealing with Dad's MS.
Remember last post (year) when I talked about N's graduation? Well today I graduated, and it was about the same. He had to sit in the same place, kind of apart from everyone else because that's where the handicapped seating is, and P went up and sat by him (with her Lego Star Wars book, so she was a happy camper.) It's still not fair to me that my family couldn't all sit together to watch my biggest accomplishment so far, but whatever. Some places just aren't as well-equipped as others.
Take restaurants for example. Kneaders is a good choice, because the one by my house is pretty roomy and so there's room to wheel him around. There's also a local Mexican restaurant that is pretty roomy as well, and my parents go often enough that everybody recognizes them there. But some restaurants aren't as good, typically fast food joints or smaller restaurants. And it sucks because you don't know until you go there whether or not it's going to work out, even if you've been there before and you think you think it'll work out. Sometimes there are problems that you don't think about, like tight corners or thick carpeting. But live and learn, I guess.
Later,
K
Remember last post (year) when I talked about N's graduation? Well today I graduated, and it was about the same. He had to sit in the same place, kind of apart from everyone else because that's where the handicapped seating is, and P went up and sat by him (with her Lego Star Wars book, so she was a happy camper.) It's still not fair to me that my family couldn't all sit together to watch my biggest accomplishment so far, but whatever. Some places just aren't as well-equipped as others.
Take restaurants for example. Kneaders is a good choice, because the one by my house is pretty roomy and so there's room to wheel him around. There's also a local Mexican restaurant that is pretty roomy as well, and my parents go often enough that everybody recognizes them there. But some restaurants aren't as good, typically fast food joints or smaller restaurants. And it sucks because you don't know until you go there whether or not it's going to work out, even if you've been there before and you think you think it'll work out. Sometimes there are problems that you don't think about, like tight corners or thick carpeting. But live and learn, I guess.
Later,
K
Saturday, June 1, 2013
Graduation
N graduated on Thursday! She looked great, and it went well. It was hard though, because at the place where she graduated, the place for handicapped people is up at the top, and you can only have one person sit with them, and the rest of the family had to go sit by themselves, which was kind of sad. I wish he could've sat with us, you know? It would have been nice. But it also would have been really difficult to get him down the stairs, and then back up again. It was for the best, I suppose, but it was also hard.
Things have gotten worse lately. Hardly any more cane, a lot more walker and wheelchair. He was able to help fix my car yesterday, so that was nice. It seems like as each week passes, it gets a little worse. I don't know what to do. I mean, there's nothing I can do, but still...I just feel like there's something more we could do, something new to try. You know?
It's okay though. His eye therapy is going better (his retina detached about a year ago and he had to undergo...five surgeries to get it fixed?) Just another reason his life is harder than it's supposed to be. I just...it's not fair. But at least his eye is getting better. It will never be back up to what it was before it detached, but it's getting better. Thank goodness. Sometimes he asks me to help him with his eye therapy, that's always fun. Who knows, maybe I've found my new career path!
-K
 |
| Walking out after graduation |
 |
| Grandpa pushing Dad |
It's okay though. His eye therapy is going better (his retina detached about a year ago and he had to undergo...five surgeries to get it fixed?) Just another reason his life is harder than it's supposed to be. I just...it's not fair. But at least his eye is getting better. It will never be back up to what it was before it detached, but it's getting better. Thank goodness. Sometimes he asks me to help him with his eye therapy, that's always fun. Who knows, maybe I've found my new career path!
-K
Friday, May 3, 2013
Falling and Walking
Sorry for the onslaught of depression you guys have been getting lately, it's been a really hard semester for me (as you very well know by now...) But today's just more of an informative post, instead of a super depressing one.
Dad went to the doctor's yesterday. He didn't have any test results or anything to go over, it was just so they could decide what tests to have him go get done next. They want to put him on some new medication (something oral) to up his potassium count. I guess that helps with the demyleination problem, my mom couldn't remember what the medication is called, so I'll try and get more details about that later. I am a bio major after all, I should be able to understand this stuff. In theory, right?
He also fell down on Sunday, which I hadn't seen for awhile. He tripped on the edge of the rug, and he started flailing all around with his cane trying to get some balance back, and he got a little bit, but not enough to save himself from falling. And then he just lay there and my mom was like "HAL! Are you okay???" And all of my sisters ran into the room because when someone like my dad falls, you hear it. But he was fine, he just lays there for a second to get his bearings back and my mom and N helped lift him up and get him going again. Nobody/nothing was hurt, thank goodness. I'm always worried he's going to fall one day and no one will be there to help him, and he'll just have to lay there until someone gets home. Usually when he's home someone else is too though, so he should be fine.
We've also taken to long Sunday walks lately, my mom pushing him in the wheelchair and the rest of us just running around being crazy. We have taken walks on Sunday for as long as I can remember, so I'm glad he can still participate in one of my favorite Sunday traditions. Makes me feel like everything's going to be okay.
-K
Dad went to the doctor's yesterday. He didn't have any test results or anything to go over, it was just so they could decide what tests to have him go get done next. They want to put him on some new medication (something oral) to up his potassium count. I guess that helps with the demyleination problem, my mom couldn't remember what the medication is called, so I'll try and get more details about that later. I am a bio major after all, I should be able to understand this stuff. In theory, right?
He also fell down on Sunday, which I hadn't seen for awhile. He tripped on the edge of the rug, and he started flailing all around with his cane trying to get some balance back, and he got a little bit, but not enough to save himself from falling. And then he just lay there and my mom was like "HAL! Are you okay???" And all of my sisters ran into the room because when someone like my dad falls, you hear it. But he was fine, he just lays there for a second to get his bearings back and my mom and N helped lift him up and get him going again. Nobody/nothing was hurt, thank goodness. I'm always worried he's going to fall one day and no one will be there to help him, and he'll just have to lay there until someone gets home. Usually when he's home someone else is too though, so he should be fine.
We've also taken to long Sunday walks lately, my mom pushing him in the wheelchair and the rest of us just running around being crazy. We have taken walks on Sunday for as long as I can remember, so I'm glad he can still participate in one of my favorite Sunday traditions. Makes me feel like everything's going to be okay.
-K
Saturday, April 20, 2013
Not as Happy
Finals week has given me some time to think. I'm just studying all the time and don't have any classes, so my brain likes to not focus on plants and chemistry and viruses, and instead focus on other things. I've been...comparing a lot of things in my mind lately, and figuring out what I've done wrong and how to fix it.
Last finals week, in December, I was on top of the world. I was excited for my piano recital for all my little Julliard wannabes, I was really enjoying hanging out with my roommates, I had a choir performance I was really looking forward to, and my social like was picking up a bit, and I was starting to date a really great guy. So what if it was finals week, and I had the worst head cold ever? I had a lot of other things going for me.
This semester, I've just felt...blah. I don't care about my "social life" (or more accurately, lack thereof). I got the lowest grade I've ever gotten on a college exam this week, and it really hurt. And yeah, I had another great choir performance, but even that couldn't really lift my spirits. Things with the guy unexpectedly didn't work out, and that's been really hard. My dad is only getting worse, despite the new medications he's on. My favorite roommate is moving away in less than a week. A few of my piano kids quit "just for the summer", but we all know what that means (read: quit forever). Things just...aren't working out. I still have NO idea what I want to do with my life. And when I say NO idea, I mean NO IDEA. I'm about to graduate with a biology degree, and yet I won't have anything. Just a bunch of student loan debt and a major I don't want.
Pathetic, right? I sound like I should be on the Dr. Phil show or something, complaining about all of my problems.
Thanks for letting me vent, readers. I usually try to keep this more upbeat, but this has been on my mind lately and I can't shake it. Maybe now that I've written it all down I'll be able to focus and get some work done. Here's hoping.
-K
Saturday, March 23, 2013
Hard Day
I don't know why today is so much harder than yesterday, or the day before that, or the day before that. For some reason, I just feel really...sad today. Why? I'm not sure. Maybe typing everything out will help.
Things just haven't really been going my way lately. I haven't been doing as well at school as I want to, I've been having some roommate problems, my love life's DOA, and I just seem to be getting easily annoyed about everything and anything. I'm the type of person that when something bothers or hurts me, I hide it away deep inside and never talk about it. Is it unhealthy? Probably. But I'm not a girl that goes around whining like the world owes me a favor. Don't we all hate those people? I know I do.
I guess the crux of the matter is that life isn't fair, as much as we want it to be. We can't make everything work out for everyone. It's part of what we agreed to when we came here; we knew that not everything would work out and that to feel great happiness, we must also feel great pain. There is no way around it, it's just how it is, and whining about it isn't going to change anything. I think that's why I'm such a reserved, withheld person emotionally. I don't like to think that I'm whining about my problems. I also know that a lot of the time, talking about it to someone helps, but I just don't know who to talk to. I don't really tell people about my dad's MS because...I don't want their pity. I don't want their pathos. And I hate to admit it, but deep down inside of me there's always the hope that maybe this is a nightmare, and I'll wake up and everything will be okay. I know it's immature, but it's just one of my coping mechanisms. And I also know that telling people about my problems isn't any kind of weakness on my part, it's letting other people help carry the burden. But part of me likes being the martyr, the one that suffers silently. I'd like to think I'm the tough girl, the one that can take anything and keep going. But I'm finding that being the tough girl is a lot harder than I anticipated.
I'm sorry that this blog isn't always uplifting, but it wouldn't be my story if it was all rainbows and butterflies. This is my journey, and it isn't always easy. Typing this really did help, though. I feel a little better inside. Even if I don't feel like talking to people, I can still type things out and it helps me feel better. If you've stayed with me this far, thanks for reading.
-K
Things just haven't really been going my way lately. I haven't been doing as well at school as I want to, I've been having some roommate problems, my love life's DOA, and I just seem to be getting easily annoyed about everything and anything. I'm the type of person that when something bothers or hurts me, I hide it away deep inside and never talk about it. Is it unhealthy? Probably. But I'm not a girl that goes around whining like the world owes me a favor. Don't we all hate those people? I know I do.
I guess the crux of the matter is that life isn't fair, as much as we want it to be. We can't make everything work out for everyone. It's part of what we agreed to when we came here; we knew that not everything would work out and that to feel great happiness, we must also feel great pain. There is no way around it, it's just how it is, and whining about it isn't going to change anything. I think that's why I'm such a reserved, withheld person emotionally. I don't like to think that I'm whining about my problems. I also know that a lot of the time, talking about it to someone helps, but I just don't know who to talk to. I don't really tell people about my dad's MS because...I don't want their pity. I don't want their pathos. And I hate to admit it, but deep down inside of me there's always the hope that maybe this is a nightmare, and I'll wake up and everything will be okay. I know it's immature, but it's just one of my coping mechanisms. And I also know that telling people about my problems isn't any kind of weakness on my part, it's letting other people help carry the burden. But part of me likes being the martyr, the one that suffers silently. I'd like to think I'm the tough girl, the one that can take anything and keep going. But I'm finding that being the tough girl is a lot harder than I anticipated.
I'm sorry that this blog isn't always uplifting, but it wouldn't be my story if it was all rainbows and butterflies. This is my journey, and it isn't always easy. Typing this really did help, though. I feel a little better inside. Even if I don't feel like talking to people, I can still type things out and it helps me feel better. If you've stayed with me this far, thanks for reading.
-K
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