08 December 2008 @ 08:55 am
Just the facts, ma'am  
For those of you that haven't been subjected to my incessant and continuous whining about how pitiful I am :P I don't talk about my disability that often. Not because I'm ashamed of it, or trying to hide it. But just because it's simply a fact of life that can't be changed, and I see no point in using it as a crutch or excuse. I don't mind talking about it or answering any questions about it. It is what it is. *shrug* Anyway, I just thought I'd make a list of some facts, for the curious.

FACT - In 2002, I had surgery to remove a benign tumor located between my brain and the brain stem. You can read more about that here, but basically, I'd been having a lot of little things going wrong, and when they did a CAT scan, they found a tumorous mass of blood vessels that had started to bleed out into the brain, causing nerve damage that was, in short, causing a series of mini-strokes.

FACT - The surgery itself was rushed (as in they found the mass on a Thursday, put me in the hospital on Friday, and did the surgery the following Tuesday). And the reason for this is really quite simple. If they hadn't done the surgery when they did, there was a very HIGH risk that the tumor could have ruptured and I could have bled to death, at the very least.

FACT - Not only was the tumor itself potentially lethal, but the surgery was, as well. Of course, the doctors reassured me that it would be fine, but afterward, they admitted that they didn't really know if I would remember anything at all when I came out of it, or even IF I would make it through the surgery.

FACT - The surgery, itself, caused damage to the nerves in my brain. Which is to be expected, really. Any time you mess around in the brain, there is that risk.

FACT - After I came out of the surgery, it showed up that I had had a major stroke. They are unable to determine how much was caused by the tumor and how much by the surgery. But either way, I was bedridden for almost two months, which was followed by a year of physical therapy involving retraining my body to walk and obey my commands.

FACT - To this day, and for the rest of my life, I will have to live with the lingering after-effects of this. Which include, but are not limited to....
- Constant pain 24/7 on the side of my body affected by the stroke. As in, to the point that most days, even getting out of bed is a chore, and even strong pain meds only take the edge off of it and bring it down to a "tolerable" level. Which I refuse to take because they make me groggy, so I just take ibuprofen, grit my teeth, and bear it, and get out of bed anyway and go on with what I have to do.
- I will never be able to walk again without the aid of a cane at the very least. This is because of the nerve damage. My left leg refuses to bend and respond properly, which throws my gait off, making me unsteady on my feet and throwing off my balance.
- I have little control over my left arm and hand. I can hold things, yes, but I don't have a strong grip, and even holding an empty glass causes my entire arm to shake so badly that if there were anything in the glass, it would spill everywhere. I am unable to really control the grip in that hand, to the point that I can't even throw or catch anything with that hand at all.
- My back hurts constantly. They think this is from the nerve damage, too, because even standing up, standing still for more than 5-10 minutes at a time causes severe back spasms,
- I will forever have to wear incontinence pads because of the nerve damage. [/TMI]
- Even now, I still have pain on an almost daily basis, sometimes worse than others, in my neck where they did the surgery. This is from both the nerve damage, and from the muscle damage from the surgery itself. That will never completely go away either.
- Because of the nerve damage, the muscles in my chest have weakened, meaning that it takes very little exertion for me to completely lose my breath.

FACT - These things are permanent. They aren't going to get any better. That's why they released me from physical therapy after a year. They'd done all that they could.

FACT - I am forbidden by my doctors to drive, for obvious safety risks due to my disabilities.

FACT - My doctors have put me on FULL disability, meaning that I am physically INCAPABLE of performing any job outside of the home. Which also means, under disability guidelines, even if I get a job at home online or whatever, I can't bring make over a set amount, or the disability income stops.


And yet, despite these things, I am up at 6:30 every morning to get my daughter off to school. I make sure that she has food to eat, even if that means dealing with a backache for hours afterward, or that on the bad days, she has to fix herself some ramen or Chef Boyardee. I keep her clothes washed, even if that means that I have to sit in a chair in front of the dryer to fold them when they're done. She has clean dishes to eat out of, even if that means dealing with a backache from standing and washing them. I pick up after her, even if it may take me a while to get it done because I have to stop every few minutes to rest my back or catch my breath. If necessary, I walk to the grocery store (never alone, though, just in case) to make sure that my daughter has the food that she needs. I put on a happy face, and deal with all of this stuff for her sake. Because I have to. I have no choice. And despite my disabilities, I am still alive, and not being so was a very REAL possibility. For that, I am thankful every day that I wake up in pain, because at least I DO wake up.
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[identity profile] kurosawabride.livejournal.com on December 8th, 2008 02:57 pm (UTC)
I put on a happy face, and deal with all of this stuff for her sake. Because I have to. I have no choice. And despite my disabilities, I am still alive, and not being so was a very REAL possibility. For that, I am thankful every day that I wake up in pain, because at least I DO wake up.


And THAT would be why I admire you so much and think of you as one of my inspirations. ♥
[identity profile] bubblegumtotchi.livejournal.com on December 8th, 2008 03:11 pm (UTC)
*blush* You know I'll never feel worthy of that admiration, but thank you, Miha. It's because of the love and support of people like you that I am ABLE to go on and deal with these things. ♥
[identity profile] kurosawabride.livejournal.com on December 9th, 2008 03:32 am (UTC)
Don't be so modest. XD I swear, you're just as bad as I am. xDDD ♥
[identity profile] bubblegumtotchi.livejournal.com on December 9th, 2008 03:33 am (UTC)
*snickers* Runs in the family. :P ♥
[identity profile] darklordavy.livejournal.com on December 8th, 2008 03:07 pm (UTC)
You told me a little about this a few years back when we first met, but I never knew all the details or the full extent. I would have never had any idea if you hadn't told me. I admire how well you deal with things and are able to be the great person that you are. :)
[identity profile] bubblegumtotchi.livejournal.com on December 8th, 2008 03:15 pm (UTC)
*hugs* Thanks, Ash. You've always stuck by me, no matter what. Even knowing what you already knew of it, you've never judged me for it, nor made me feel like you felt sorry for me. Like I told Miha, it's the love and support from you guys that lets me know that I CAN keep going. <333
[identity profile] ladylenne.livejournal.com on December 8th, 2008 03:56 pm (UTC)
And all this....

Makes you an amazing person. ♥
[identity profile] bubblegumtotchi.livejournal.com on December 8th, 2008 04:56 pm (UTC)
[identity profile] hitsujiga.livejournal.com on December 8th, 2008 04:32 pm (UTC)
i never knew you were disabled, and never that it was this severe. i respect you for handling it everyday, the pain...all the disadvantages like you cannot go to work and stuff. you cannot even work or your disabilitiy income will stop. that's so rotten of all the so-called civilized countries in this world.
and now you deal with family problems here and there.
if i would face this i'd sure be dead by now. because it took me something 'less' to worry about that i thought about i not wanting to live anymore. and i still need time to recover from my depression. and you deal with it on 'the side'. that's why you get my full respect.
i hope you care for your soul, because if your disability can't be cured in any way or get better you should make sure that your soul stays healthy. so don't just out on a happy face, just say when you feel down and be sure there are people who are there for you, when you suffer.
[identity profile] bubblegumtotchi.livejournal.com on December 8th, 2008 05:05 pm (UTC)
*hugs* I could tell you the same about that last part. :P
But seriously, thanks, hon. ^^ I just don't talk about it a lot unless someone asks or something, cuz... what's the point, really? It's there, it's not going away, so why dwell on it, yanno? The way I see it, while, yeah, to some people, it sounds bad, I know there are others that have it far worse. I still have my life, and people that care, and that's more than enough reason to go on. ^^
[identity profile] hitsujiga.livejournal.com on December 8th, 2008 05:29 pm (UTC)
it's not like you should whine about it..just from time to time say like, you want to take a rest today or something like that. because it's okay. even if others have it worse, it's about you. just don't lose your positive thinking in that way and go on.
[identity profile] bubblegumtotchi.livejournal.com on December 8th, 2008 10:10 pm (UTC)
Okay, okay, I get it! XD I promise that I'll take a break and step away from things if I need it. Though, that's one of the things she doesn't get, too. She has friends she can invite over or call or go places with. But being pretty much confined to the house, getting online IS my human interaction.
[identity profile] hitsujiga.livejournal.com on December 8th, 2008 11:28 pm (UTC)
yeah and it helps you, even if you can't 'socialize' in a way others do, i think it's better than nothing.
[identity profile] kagome-angel.livejournal.com on December 8th, 2008 10:52 pm (UTC)
I have always admired you for everything that you are able to do, and now I admire you even more for it. I did not know the full extent of your disability. *hugs tightly* There are those who would have given up on life a long time ago--I know, because I've seen it happen, and I'm probably going to see it a lot more because I'm a nurse.

But you are one of those resilient few, who wakes up in pain and still goes about the day, doing everything that you can. You take good care of Amy, and I know that you do everything that you possibly can--and even more than that.

Don't ever let anyone tell you that you are anything less than amazing. You are above and beyond that, and there are those of us who know that, and are grateful and honored to have such a wonderful, brave individual as a friend and family member to us.

I love you, honey. Thank you for always being strong, even on days when you don't feel like you can be.

(P.S.: Thank you for the presents. ^______^ I was actually going to do the same thing for yooou but now I'm going to have to do something different so I feel somewhat creative. *LOL* <3333333333333333)
[identity profile] bubblegumtotchi.livejournal.com on December 8th, 2008 11:21 pm (UTC)
*snuggles* Oh geez, now you've gone and made me tear up again. (in a good way, though <333)

Seriously, thank you, darling. You guys make me blush, you really do. I feel so undeserving. I'm just a normal person.

But thank you. It means the world to me. Like I told Miha, it's you guys that give me the strength to go on, to know that I CAN go on. Because I have the love and support of absolutely wonderful people. ILU guys so very much.

(You're welcome, darling. I had to think fast when I realized that sending out cards was a no-go this year, and it was all I could think of. LOL I already told you you don't have to do anything. I'd be good with just a fic. Hell, *waxes cliched, though true* I'm happy just knowing you care. ^^ <3333333333333333)
[identity profile] enerirenie.livejournal.com on December 9th, 2008 12:26 am (UTC)
You're a hero, mommee ♥

Er, heroine.

Does your family know about all these facts?
[identity profile] bubblegumtotchi.livejournal.com on December 9th, 2008 12:28 am (UTC)
Yeah, they do. Sara more than the rest of them, actually, since she's stayed with us for months at a time. -__-
[identity profile] enerirenie.livejournal.com on December 9th, 2008 12:33 am (UTC)
...Then why does she keep saying those things? DX
[identity profile] bubblegumtotchi.livejournal.com on December 9th, 2008 12:35 am (UTC)
Beyond the spoiled selfish brat defense? I have no clue. *sigh*
[identity profile] enerirenie.livejournal.com on December 9th, 2008 12:38 am (UTC)
*hugs you tight* You're still amazing, anyway. We love you, Mommee, we do.
[identity profile] bubblegumtotchi.livejournal.com on December 9th, 2008 12:41 am (UTC)
*hugs* Thank you. ^^
[identity profile] talene309.livejournal.com on December 9th, 2008 04:26 am (UTC)
*practically speechless*

You are an amazing woman Dee-chan. You really have no idea how much more I look up to you now. *.*

<333 I Love You
[identity profile] bubblegumtotchi.livejournal.com on December 9th, 2008 11:48 am (UTC)
That wasn't the actual point of the entry, but thank you, koi.

I love you too <333