Tuesday, March 30, 2010

Legs wide shut

Medicine fixed my achy, breaky bladder in minutes this weekend but it is broke again.

I started the medicine on Friday night and it worked great. It is an anti-spasmodic, which apparently was just what my bladder needed. I was not rushing to the bathroom and stuff. Awesome, I thought.

The rotten thing is that there are always "but"s in my life. And on Monday, I got smacked by a doozy.

The potential side effects started on me. One was nausea, so I was feeling a little off. Even a couple of Cinnamon Pop-Tarts did not help.

Even worse, the medicine made my mouth dry and pasty. I was drinking so much water to moisten my mouth that I was going to the bathroom more than I did before I even took the medicine.

I decided to stop the medicine and try again next week when I am off work a few days and can afford to feel sick.

I made this decision after my little sister suggested I just catheterize myself. She was serious, having forgotten that I have no fine muscle control and that I almost fainted when a doctor tried to catheterize me. When she asked this, all I wanted to do was cross my legs and prevent any possible entry. Writing this paragraph has my legs in the same defensive position.

Sunday, March 28, 2010

Nope, I don't buy it

Mom compared me to Satan the other night when I was sick. For real.

Maybe it was some new age-y, reverse -therapy type of medical technique for use on the sick. It didn't work.

I merely asked her why God would say such things as angels will keep us from catching our foot against a stone when it does not happen.

I asked this because I was rubbing my face and it hurt pretty badly and I remembered that as I was transferring I coughed, which caused my head to slam into the metal of the wheelchair arm. The middle of my forehead looked bad, but the left side of my upper face was just one big bruise.

Given then that no angels bore me up, what's up with that saying?

Mom pointed out the devil asks Jesus the same question during the temptation in the desert. He doesn't exactly. The devil suggests Jesus throw himseld off a parapet to test God, which Jesus declines.

Mine was not a test, though. It would be like if Jesus were walking through the desert and just flat out fell, and the devil said: "Whoa, dude, what's with that? Where are the angels?"

I have learned, though, that God never claimed that he would send angels to protect us from tripping. It was just a psalmist.

No doubt, the psalmist did not have Friedreich's ataxia.

Saturday, March 27, 2010

Doctors baffled as guy walks into new house

The home-building is moving along at exactly the pace my real estate friend said it would. That means slower than I hoped but about what I expected.

Perhaps, though, this will give me time to temper my beliefs about this new house will change my life and make everything wonderful.

I am pretty sure the house will not cure my Friedreich's ataxia, and what would be the sense of that since it will have all those accessibility features.

But other than that, I have life-changing expectations.

I'll become the host of parties, and friends will stop by all the time. I will play Wii with my nephew all night. Claren the wonder dog will find canine friend nearby. Mom will still make me muffins because, let's face it, Mom's cooking vs. my sister's ... (HEE! Just a joke.) I will become a social butterfly.

I have a problem with expecting changes in locale to solve my problems. My second counselor put me on meds because I became depressed when moving back to Northern Virginia didn't make everything better.

I was so sure it would, never mind that I was also using a wheelchair full time for the first time.

I was so sure I'd make friends and go out. I guess I slowly made friends, but when you don't drive and can't get into a lot of houses, well, you don't get out as often as you'd like.

I started seeing my third counselor after I moved into my own condo, and that also did not free me, at least not like I hoped.

The house will be done in summer sometime. I have until then to lower my expectations; maybe just count on the all-night Wii marathon.

Tuesday, March 23, 2010

4 a.m. phone tag

No. 2 on my list of most hated but most needed tools, just after the wheelchair, is my cellphone.

I got a phone on Sept. 12, 2001, after being carried down 13 flights of stairs when our building near the Pentagon was evacuated on 9/11. I figured I ought to have a way to call for help or let people know where I am.

And it has helped, but I don't like being "always" reachable. I put always in quotes because have the time I don't hear the ring or I don't reach it in time.

This, of course, makes the people trying to call me uncomfortable, thinking I am unable to get my phone so they try other ways to contact me and are sometimes forced to come check on me in person.

And of course, talking on the phone is not one of the pleasures for someone who hears poorly.

But that isn't the worst of it. The worst part is the battery that runs out every few days even though I hardly ever use it.

About 4 a.m. last night, I woke up because the low-battery alarm started going off. At first I tried to ignore it. That didn't work, so I reached precariously out of be, turned on my wheelchair and wheeled it near enough that I could reach the pouch where I keep the phone.

I reached in, felt something smooth and pulled out my work ID. I tried again and this time I got my wallet. The phone was the last rectangle in the pouch so on the third tried I got it ...

And proceeded to fumble it somewhere on the ground.

I didn't see it or feel it. I tried to get Claren to get it, but she came over, looked around, then wandered off.

I again tried to ignore it, putting a pillow over my head, and the pause between beeps is just enough to make you think you can successfully ignore it. Then it beeps and freaks you out.

About quarter of 5, I turned on the light, got on my glasses and rolled partway out of bed to look for the phone. It was nowhere to be seen, so I rolled further off the bed, rested my head on the floor and looked under the bed.

There, about three-quarters of the way to the wall was my beeping phone. I was barely able to reach it and then it was quite a hassle to get back in bed without falling out.

I flopped back on the pillow, just as Dad got up at 5:15.

Monday, March 22, 2010

Ooh! My head

I just went to the bathroom and bashed my head off the wall while pulling up my pants.

Then I came out, opened my laptop, sneezed and drove my forehead into the edge of the screen.

Nothing cute or learned about it. It just flat out sucks to have Friedreich's ataxia.

Saturday, March 20, 2010

Home alone -- wheelchair edition

Some people will no doubt see the following story as proof I I should never be left alone but I prefer to see it as evidence of the opposite: that I can survive just about any crazy crap Friedreich's ataxia throws at me.

I got up at 6 to feed Claren, something I do rarely these days because Dad feeds her in the morning since he is up. But Mom and Dad are away this weekend. I went to the bathroom and was going to put on the pants that have been in there for weeks. They were gone.

I knew Claren needed to pee so I just put my parka over my legs and nakedness and took her out. I fed her, then went and got my pants from my clothes shelf.

I went to the end of the dining room to pull on the pants where there was a little more room, but as I bent over to put on the pants, I hooked my wheelchair joystick and started heading into the bureau.

Somehow, I managed to sit up and stop the wheelchair before I hit anything unmovable, but then as I leaned forward again, I kept moving forward and down. I just had time to notice that my seatbelt had become unbuckled and to think: Oh, crap.

If only there were an Olympic medal for tumbling out of chairs, this would have won the gold. It was also a little X-rated as I still had no pants on. I banged the back of my head into the bureau and ended up seated against it with my pants in my lap.

I quickly put them on, thinking that if I needed to call for help, I wanted to be dressed. Then I started thinking:I did not have my shoes so I had pretty much decided to call my little sister for help.

Another fall, though, changed my plans.

I was just sort of sitting there more or less, still thinking, and I just fell over sideways, smacking my forehead flat on the floor and sending my glasses skittering somewhere.

After checking to see whether I was bleeding -- I was not -- I realized that now I was mostly blind and really needed help.

At that moment, Claren earned her stars.

She came over and I told her to get it, and she found and brought me my glasses. Then on a lark I asked her to get my shoes. She wandered over to the bed where my shoes were and brought ... my hand cream. I asked her to get my shoes again and this time she brought ... a dirty sock and then the other one.

She seemed to have her fill of retrieving by then and just started playing with me. I asked her to get my shoes one last time, and she did! She got one and then the other.

I could not call for help now after that impressive help so I got up and took the Wonder Dog out to poop.

Friday, March 19, 2010

Back to work, maybe a day early

I think I found new backers for my "one person-one illness" plan: my co-workers ... at least my intern.

I went back to work today for the first time in nearly two weeks. I worked from home most days so as to spare others my noisy and nasty expulsions.

Things went mostly OK in the morning as my codeine cough syrup kept problems to a minimum.

The one problem was because I was in my manual chair, which I used because I wasn't sure I'd get a ride home in the van. I was going to the bathroom when I coughed. This caused my legs to lift up and my feet fell off the footrests and backward. My body fell forward. My hands still held the wheels, but I could not sit up and I was a little stuck. If I moved my hands to help me sit up, I'd fall. If I did nothing, I'd eventually fall. Finally, using muscles I forgot I had, I managed to pull myself back up, but I remember thinking as I was sitting there thinking I wad going to fall: This is going to hurt.

No one saw that, but late in the afternoon, I got a tickle and could not clear my throat, especially not with the dainty coughs and nose-blowing I was doing in public.

My intern, who we have established was like in first grade when I graduated from college, suggested I leave early.

I did and once I was able to blow and cough with reckless abandon, I was fine.

Thursday, March 11, 2010

Why, yes, that is a dog leash I am wearing

As my hacking fits moved into day three, I decided to rig up something so I did not fly into my computer screen at every cough.

I got Mom to sling one of Claren's long leashes through the back handle of my chair. Then I ran it across my chest like a seatbelt. Then I ran it across my lap to a carabiner I keep on my chair.

I don't mean to sound too arrogant --I mean I was wearing a dog leash -- but it worked pretty awesomely.

Wednesday, March 10, 2010

Here's a good idea, God

I suspect I have written this before, but: If I were God, people who struggle with disabilities would get a pass on all other illnesses.

For instance, if you have ... say Friedreich's ataxia, then you do not suffer from colds or nasal allergy symptoms.

It's a cool idea, obviously, because that's the way I'd roll if I were God. But judging from my experiences while sniffling and coughing, it would also be a real time saver for the deity who always hopes to be "right on time."

If I had a nickel for every time, I cursed or prayed or both when my head flew into my computer screen or my little body was convulsed with flemmy coughs, I'd be rich and God would be busy listening to my prayers.

It's a win-win for all of us; I don't see how God has not done it before.

Tuesday, March 9, 2010

How much worse?

There are good days where I think:
"Hey, I really haven't gotten worse in the past several years. Maybe this is as bad as the fucking Friedreich's ataxia (ef FA) is going to get. I can live like this. It won't be easy, and I sure don't envy me, but I can do it."

Then, a night like last night happens, and the reality makes me cry.

I fell transferring to my chair after The Big Bang Theory. It wasn't a bad fall. but even with the help of Mom and her gait belt I could not get up in the chair.

Even with the belt, which is a plastic belt that goes around my chest and makes it easier to left someone, Mom is still 71.

It's not a surprise we had trouble, then. I refuse to make Mom struggle, and my muscles just won't freaking do what I ask. My feet kept sliding on the floor, my legs could not push my butt high enough to reach the chair, my arms couldn't pull it up.

We finally succeeded, and Mom pointed out many reasons -- it is a short couch and high chair, a slippery floor -- that that fall was not a reliable gauge of my ability.

It doesn't really matter. This was not one of those good days.

Saturday, March 6, 2010

No more Spidey

One day soon -- this weekend probably -- I will read my final Spider-Man comic book ... at least for a while.

One of the first comics I remember owning is Amazing Spider-Man 185 from October 1978. In it, Peter Parker does not graduate from college because of an incomplete in phys-ed.

I wish I could say I have all the issues since -- that would be so awesome -- but no. I do have a lot of Spidey comics, but nowhere near that many.

I love Spidey, especially his willingness to shoulder responsibility -- with great power comes great responsibility and all that.

Because of this love, I overlooked a lot. I went along when Marvel unmasked him,, survived the Iron Spider outfit and even kept reading after he made a deal with the devil, trading away his love with MJ so everyone would forget his identity and Aunt May would survive a gunshot wound.

I stuck with Spidey when Marvel accelerated his publishing schedule, so instead of $3 a month, it costs more like $9.

Marvel and the writers apparently get responsibility when it comes to Spidey, just not when it comes to the real world. In the issue that came out last week, Peter manipulates a photo for the newspaper.

It is a cheap shot at an industry that is hurting ... and it is my industry. Mostly, it is so stupid. Peter has been a journalist since high school. No journalist would consider photo manipulation. It is no different from writing a lie.

And I will put up with no more.

Friday, March 5, 2010

Sometimes I run over my own feet

Mom and I took Claren the wonder dog for a quick walk tonight, and when we were on Lincoln Avenue, a car came up behind us. I headed to the side of the road, but accidentally clipped Mom's foot on the way over. She was fine, but I do know how she feels.

A few weeks ago, I decided to do my exercises while headed to my desk at work. This worked fine until my left foot fell off my foot plate and I ran it over.

Today, I was playing with Claren outside and she jumped on my lap. Somehow my foot got trapped between the chair base and the foot plate, perpendicular to the ground.

I tested whether it would be safe if I wheeled in to get help. It wouldn't, I decided. I was bent over trying to wrestle it free when my little sister came up and was like: Don't move, I'll help you, just don't move.

Now her paranoia about me moving was kind of confusing because I was stuck. Of course, it would have been understandable if she knew I was thinking about undoing my seatbelt and flipping myself out of my chair to free my foot.

Tuesday, March 2, 2010

Can you imagine Matt with a zombie wife?

I am not ignorant about zombies.

I am not in the same league as any of my nephews, each of whom can hold serious and detailed conversations about where they will go when the zombie menace arrives, but as I say I am not ignorant. I have read World War Z and the occasional zombie comic. I have seen several "of the dead" movies and that stereotypical Bond masterpiece Live and Let Die, which assured Jane Seymour a place deep in my heart.

For the life of me, though, I am not sure why I am turning into a zombie, but I am. No one has bitten me; I have not befallen no plagues that I know of.

My feet just are covered with cuts and scrapes that do not heal and instead just look gross. One trait of zombies is sores or decaying flesh. My cuts are not decaying, I guess, and they don't hurt, which may be another zombie trait. Zombies don't feel pain, do they?

And it is not like being zombie-fied solves my Friedreich's ataxia. I don't know that zombies' bodies are healed. In fact, the other zombies would probably just set on me for the easy pickings.

Oh, now this seriously blows. I was looking up whether zombies feel pain when I discovered that an assistant professor at Harvard has given a name to the zombie plague: Ataxic Neurodegenerative Satiety Deficiency Syndrome.

I know that ataxia just means a lost of control of bodily movement, d neurodegenerative just means a progressive loss of neurons or brain function, but how would you like it if two words that describe your all-too-real disease also describes the goddamned zombie plague.

I guess we can now attribute my zombie feet to genes. I wonder what will be next.

Just my luck I'l be the only zombie to contract Kuru.

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