My Life With Chiari

June 13, 2012

I wrote this for a lady on a Chiari website. And since I’m whining today I decided to post it here too.

 

Looking at my life since Chiari is like looking through the wrong end of a telescope. My life went from active and open with every possibility to minimal in the extreme.  Over the roughly ten years since I was diagnosed with Chiari, I have gradually whittled away pieces of myself, my activities, my dreams, my relationships, and my possibilities.  I am left with the knowledge that I am less.  Less than I could have been, less than I want to be, and less than others expect me to be.  It is a constant humiliation. It is a constant pain in so many ways that it’s hard to imagine putting them all on paper.

 

I live in an almost constant state of dread…..I dread the beginning of each day because I know that before the day ends I am going to wish I lived a hundred years ago when people died early.  I dread laughing because if I do, people are going to expect me to do things that I either can’t do, or that I know if I do them I will pay for them later.  I dread the disappointment in the faces of the people I love when I say I can’t. I dread housework. I dread parent teacher conferences because I am usually so distracted that I can’t ask questions, I can’t think right, I can’t make promises. I dread getting a great idea because I know that it will come to nothing, because if I don’t forget it all together, I won’t be able to follow through and that is one more disappointment to add to the millions of others I’m stacking up.  I dread, and when I say dread I mean DREAD going to the doctor.  I have apparently been branded as …..I’m not even sure what. Every time I walk into a doctor’s office, they take one look at my file, smirk, and shake their head.  I am apparently an idiot because I walk in with hope every time and I walk out wishing a really big heavy truck would just hit me and take me out of this. I dread coughing(headache), using the toilet(headache), changes in weather(headache), heat(dopiness), happiness(creates expectations I can’t meet), sadness(thoughts of suicide), hope(leads directly to devastation), open spaces(nothing to hold on to), battery operated toothbrushes that my dentist HIGHLY recommends(makes me fall down if the casing touches my teeth), driving or riding in a car(obliterates my consciousness), other people’s hopes(disappointment), dreams and desires(disappointment), other people’s disappointment(wish I was dead), waking up(what new symptom, disappointment, limit), going to sleep(what will happen in the night to my brain), Wal Mart or any other store(makes me sweat and lose my mind), cooking(can’t remember the order of things to do), gardening(poor plants), mowing the lawn(vibration of the mower screws my brain to pieces), school programs that take place after 4:00 pm(too tired, too brain fried to go). This list is longer than there is time to read it.

 

I live in fear of the fallout from my symptoms. I fear open spaces because I fall(broken ankle complete with a metal plate and nine screws from stepping off of a 6 inch porch). I fear going out in public(because I have bladder and bowel incontinence). I fear that my husband and kids will get sick to death of all the things I can’t do and gradually disappear just like the rest of my life has. 

 

I used to have a life.  My husband and I used to go all over the place doing all kinds of things. We used to go to Bike Week at Daytona Beach in Florida every year. We used to go camping. We still go camping but it’s a huge production getting all my ridiculous accessories ready to go with me. And every time we screw up the desire to do anything it’s always with the knowledge that at any moment from start to finish I might have to just come home.  I used to have a job and be a contributing member of my family and society. Now I can’t remember anything.  I have lost large blocks of my life. I’m not even really sure anymore who I am, much less who I used to be because I have lost so much of myself.

 

I used to have friends. But little by little people drift away to find people who can DO things with them.  I’m ashamed to invite people to my house because I can’t keep up with housework.  I can’t bend over to pick things up, I can’t lift my hands over my head to sweep down the cobwebs, I can’t stand very long so the dishes are constantly piled sky high, I can’t even wash my hair regularly because I can’t close my eyes without falling over and I can’t hold my arms up very long to wash it, and, and, and, and. I get FUBAR’d when I ride or drive. 

 

The last time I actually tested my IQ(which was in the early nineties), it was 147. Not bad, right? Well…..it’s not good. Because I’m stupid most of the time. I used to be witty, and funny and smart. But now I get a joke the next day if at all. Partly this is because I can’t tell what people are saying.  My neurologist had my hearing checked once because of that, even though I told him that I could repeat back to him every word he said verbatim, I just didn’t know what those words meant at the moment.  That 147 doesn’t work in my favor at all.  Everyone just thinks I’m lazy, I’m lying, I’m conniving.  I went to a neuropsychologist twice. The first time she told me that the only person who had scored higher on her testing was a Neurosurgeon.  The second time I went I scored higher than him. Then she told me that there was NOTHING wrong with my brain.  After that she leaned in close and whispered…..Are you trying to get on disability?  I was so humiliated, so ashamed of myself for even being there, for wanting to find out what was wrong.  And now, even though it would help immensely, I’m too ashamed to file for disability. And every day I wait, the money I would get for it dwindles down.

 

One of my pupils is smaller than the other. Sometimes I get this thing, it’s hard to describe but I’ll try. I feel like I’m being choked only not choked of air. I can breathe just fine but when you hold your breath for a long time your face gets red and your eyes bug out and it’s like that. Just this pressure in my head like it’s trying to explode. Then I hear a buzzing sound that seems to match a heartbeat and I hear what sounds like the whoomp whoomp whoomp of a helicopter. While the buzzing and the whoomp are going on I see blue flashes of light. Neon blue. It’s really pretty. After that the pressure goes away. But while I have the pressure, the size of my pupils is REALLY different. That one scares me. I told my Neurologist about it and he set me up an appointment to have my CSF flow checked….a week later. I guess I’m stupid for wanting to have it checked while it’s happening. I’m really not sure anymore what I should expect, what’s stupid, what makes sense. Nothing in my life really makes sense anymore.

 

I hurt. Physically I am in pain almost constantly. Emotionally I AM in pain constantly. Mentally I’m too stupid to be in pain constantly and so I continue to hope. I hurt in my neck, my back, my arms and legs to a lesser extent. I would give anything on this earth to just get a massage, a neck rub. But my family are terrified to touch my neck. I feel like a leper sometimes.  Years ago I would still ask for someone to just rub my shoulders for a minute. Now I never even consider asking anyone to touch me.  My skin starves for some basic human contact. Instead I just get someone to put my TENS unit on and then I cry for a while.  Cripes I sound so damn pathetic!

So there you have it. Look fast because pretty soon you won’t be able to see me anymore.

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Little Of This, Little Of That

January 8, 2012

We have some bunnies.  They are adorable as only bunnies can be.  MDH got me two bunnies when his friend let him know that he had some bunnies he needed to find a home for.  Apparently, as he always does, he remembered when we were in the Farmer’s Supply store and I spent a good thirty minutes conversing with a bunny in a metal tub.  I love talking to animals.  They are in no way judgemental and they always laugh at my jokes. 

So we have these two babies.  They are furry and funny and curious and brave.  We name one Isabella and the other Nitro, which got changed to Snuggie, which got changed to Noogie(I have no idea where this came from, but I was the one who started it).  Now Isabella’s name is Izzy.  This is because we realized Izzy was male when he found his “special purpose in life” and started humping Noogie til he fell over sideways in a swoon. 

We finally had to move them to different quarters because Noogie emphasized her “not tonight, headache” with an attack that left Izzy sans hair on his nose.  MDH, darling that he is, constructed them a three-story condo, complete with balcony and burrow.  We actually moved lawnchairs into a semi-circle around them and sat outside drinking coffee and watching the bunnies for amusement.  (We have such a random life sometimes)

Just in case, we kept track of how long it had been since they were together and finally came to the conclusion that Noogie was not preggers.  Whew!  Dodged that bullet.  Well, not so much.

Rocky and I returned from town one day to discover four tiny little bare assed baby bunnies in the cage.  What??  Yep!  Four of em.  Crazy Legs told us he walked in the house and found Mini (one of our rat terriers) laying on the floor, eyes open, not moving.  And DeeDee on the couch with her paws up on the back of the couch, staring at the wall.  He couldn’t figure out what was going on.  The he checked the rabbit cage and there were the babies.  At that point, the dogs came out of lala land and started freaking out. 

OMG…..baby bunnies are the cutest things EVER!  The fit in the palm of your hand, will try to hop out even though they can’t see, and they feed upside down!  I’m serious.  They get close to their mom’s tummy then they flip upside down onto their backs and start to feed.  Weird! 

We gave one away and sold the other three.  Ten bucks apiece!  w00t!  I was thinking about getting Izzy fixed but now I’m not so sure.  I wouldn’t mind feeling like a contributing member of this family again.  We’ll see how it goes.

Next……Intentions vs Results

I have a very good friend who had a brain tumor.  She was treated for it, did a bunch of rehab, got way better(even lost weight!!!), and it was all way awesome!  She was telling me the doctors told her she had a 50/50 chance of it coming back at some point in the future.  I told her that was great!!!  She said…Huh?  WTF is so great about that????

My intention was to say that a 50/50 chance is all we ever get.  Any of us.  We could wake up dead tomorrow, we could choke to death on a chicken sammich, we could be walking down our steps and get tripped by a tear in the space/time continuum(don’t laugh, shit like that happens to me all the time!),  a piece of space debris could fall out of the sky and embed itself into our brain.  ANYTHING could happen.  Every time you wake up in the morning you have a 50/50 chance of going to bed that night without a tag on your toe.  THAT was my intention.

Result?  I pissed her off and now she knows without a doubt that I’m an idiot.  *sigh*  I’m really getting tired of people finally figuring that out.  I had hoped to keep it a secret for a while longer. 

Intention: Wake up in the morning and decide what housework I need to do, then do it.

Result: I get so bogged down in all the things that need doing that I ‘m not able to do, that I can’t think straight.  I can’t sort things out in order of execution, I can’t bend over, I can’t put my arms over my head for any length of time, I can’t get too hot, I can’t be in an open area without something to hold onto in case I get vertigo, I can’t go down steps very good (hence the badly sprained right ankle and broken left leg that started on the first day of summer and ended on the last day, literally, which was caused by a step down off of a six-inch high porch), I can’t turn my head too fast or I will fall down, ……I could go on forever but I will stop here. 

Intention: Find out how the kids’ day went at school. 

Me: How was your day?

Result: *sigh*

Buddha: FiiiinnnneeeUH!  (whereupon he disappears into his room never to be seen again unless a) food is ready to eat, or b) I wake him up the next day to go to school.

Princess Bella:  Why, what did you hear?

Me: Uh….nuttin.  I was just asking.

PB: Well it was fine! (face getting red, eyes slightly bulging)

Me: Good!

PB: I don’t know why you always have to ask me that!  Nothing happened!  Everything was fine! Not one bad thing happenedalllday! (face very red, eyes bugged out like something off of Outer Limits)  Whereupon she disappears into her room, which lasts all of five seconds because Bella runs at warp speed.  She can only bounce off the walls of her room for a few seconds, then she has to have a larger area to bounce off of. 

Me: (alone in the room, slightly disoriented) Well, that went well.

Next…….

I’ve been browsing around the blogosphere and I ran up on something truly amazing!  simplynutmeg.com is the coolest. blog . ever.  Nutmeg has the voice I heard in my head when I first imagined this blog.  THAT was what this was supposed to sound like.  Unfortunately, my blog comes out sounding just like me.  I wanted to sound all witty and funny and cool.  I guess this could be considered a P.S. to the Intention vs Result section of our day. 

Go check her out.  She rules.  http://simplynutmeg.com/  And while you’re there, you HAVE to check out the “how I survive barney” section.  The woman has taste!  You will find yourself, ninety minutes later, holding your sides laughing and wondering where the time went!

Ok, seriously, I have to get something done.  I have been sitting here for hours and it’s time I earned my keep.  I could go make that bread in those new pans that I bought myself for Christmas.  They have cute little shapes.  But I’m not sure if the bread in a tube will work for that.  Maybe I should try to come up with something more productive to do with the bread?  Or I could do laundry. But I can’t bend over to take it out of the dryer, so I can only do one load until someone comes over and I have to beg them to get them out for me.  I could clean out the closet, but that requires arms over head, bending over….no, I guess not that one.  I could vacuum the floor!  Yeah!  Yay I found something I can do!! 

Crimanently, it’s sad when sucking dirt off your floor is the most productive thing you can think of to do in a day. 

Welcome to Life in the slow lane.

 


My Big Day

October 27, 2011

A couple of days ago I had the best day I have had in so long I can’t really remember. It was awesome!

No, I didn’t win the lottery or Publisher’s Clearing House.  I didn’t get a free trip to the Bahamas.  I didn’t get anything….except to feel fantastic, incredible, happy, healthy,   normal.  For me normal is the highest height I can aspire to.  It’s the highest feeling I’ve had since I got FUBAR’d.   (Thank you Arnold Chiari Malformation and MS….you suck a big green weenie)

It started when I woke up at 4:30 am.  Very unusual for me lately.  Normally I would hit the snooze about seven times and sleep until almost 5:30 am.  But I felt really awake and so I rolled with it.  I got up and fixed homemade biscuits and sausage for everyone for breakfast.  After I got everyone off to school and work, I sat down to read for a few minutes.  When I looked up again I decided that feeling normal ROCKS and so I would use that time to do something constructive.  I proceeded to clean up my paper avalanche around the computer.

When I die it is going to be from being suffocated by a large pile of paper that I couldn’t think well enough to decide what to do with. 

So I put the FAT principle into motion and divided everything into three piles: File, Act, Toss.  That eliminated about 90% of the paper.  Then I filed the F pile and that left me with the Act pile.  So far so good.  Then I tossed 3 years worth of old files and dug down to the current page of my desk calendar.  That right there is more than I’ve done in months and months. 

After I was done, I could actually get to my computer without climbing any paper mountains and without a native guide.  I was happy.  I then went grocery shopping with Rocky and Pony.  When we got back I put away groceries, loaded the dishwasher, did some laundry, and fixed dinner. 

Sounds like a small fraction of anyone’s normal day, doesn’t it?  Yeah, I know.  But for me it was like a life orgasm.  I got to spend a day being sorta like I used to be.  You know, like a real person.  Like a human being that can get up in the morning and look around and say…..I need to do this and this and this…..and not mean ONLY this and this and this but mean in addition to my normal stuff. 

What I can usually do is get up in the morning and look around and say to myself….how in the name of God will I ever be able to catch up with all this stuff?  Then I get really optimistic and say to myself….just pick a couple of things to do and don’t worry about the rest.  Then I look around and there is just SO MUCH that I haven’t done that I can’t decide what needs doing most.  Which makes me feel like a total slug and worthless in the extreme.  Then I get to feeling bad about myself and it ends up where I spend most of every day trying to keep from cutting my own throat for being such a worthless excuse for a human being. 

Because I can’t lift my hands over my head because it messes up my neck and I get headaches and vertigo, and I can’t bend down because it makes me dizzy, and I can’t stand up straight for long because it makes my knees go numb, and I can’t and I can’t and I can’t and I can’t……..!  My entire life is the things I can’t. Sometimes I just go ahead and do it anyway.  Then I spend days where I can’t think good, I can’t walk good, I can’t talk good, my head hurts, my neck hurts and that damn screaming tinnitus will not leave me alone.  I don’t understand what people are saying to me, and I don’t get what they want and I don’t know how to say that I don’t get it.  I am terrified of becoming stuck in that state one day.

But the other day……I had a GOOD day!  I live off of those like they are food.


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