Wednesday, August 26, 2015

The Hidden Cost of Chronic Pain

If you look up hydrocephalus in the encyclopedia(assuming people still have one) or on the internet, you will see pretty much the same thing. That it's a blockage in the flow of cerebrospinal fluid potentially caused by what could be hundreds of different things(csf is gross by the way just thought I would let you know). It says that if left untreated, it WILL lead to mental retardation, growth in skull size until you are unable to sit up because of the sheer size of your head, and ultimately DEATH. But then ironically after hitting you with those seemingly insurmountably terrible odds, it says but there is a treatment. But then it does it again. It says, there is a treatment(HIGH) but then it says, but this treatment is very flawed, and has a 50% risk of failure within 2 years(and FAIL), which will probably lead to many brain surgeries throughout your entire life... What they leave out though, is the fact that with each surgery you become more complicated. Maybe that's understood? I'm not sure, but I can tell you one thing I definitely wasn't expecting to be where I am now 11 years ago when this all started.

Chronic pain has stolen my entire life away from me. Everyone says, "Oh but you go out you have fun" and I don't want to give the wrong idea here, YES I do but everyone who knows me knows I love to plan, and if everything is not predictably picture perfect I freak out. (Which confuses the heck out of me why I love dramas on tv, so many twists and turns but that's a whole other story)I had this entire plan of what I was going to do... And I had to throw it all out of the window when I got to college. Chronic pain has stolen spontaneity; it has stolen the ability to just curl up with a book on a Monday night, I argue with myself, "Kimi if your pain is too bad, you can't turn on the lights, because otherwise your head will pound too bad..." I saw my body go from that of a healthy teenage girl who loved to go on walks with friends, to a girl who still loved to go on walks, but struggled to keep up with friends because her foot hurt too bad, because she had not been wearing her orthotics that her Physical Therapist basically said had to be in her shoes every time her feet hit the ground. Many of you think, Yes this sucks but hasn't it become the  slightest bit predictable now? And the answer is YES it has, but do you think that has lessened the blow? No. I've seen my life in both lights, the healthy, invincible light and the  chronically ill, would rather sleep till 10 than get up at 6 light. And I would be lying if I didn't say I wanted to "smush" them together so I could have both. Don't we all want to do that with some things?

 But it's like I'm straddling an invisible line. On one side is my chronically ill life, and on the other side is my healthy, carefree fun life. Would I like to take what I've learned from both, stick them in a bag and shake it up? Of course... But I can't. I recently went to the pain doctor and got the greatest news ever, she said the two words that every chronic pain patient wants to hear, "You're stable." But as soon as the excitement wore off, the fear set in. "Wait does that mean at some point I won't be  stable anymore"? Will I at some point, down the road, be on that ever familiar path of tweaking medications, becoming ever more tolerant of narcotics, which is my greatest fear? However, the facts are the facts, every surgery I have, makes me infinitely worse (never mind that in the past 10 years I've had 35+), then it's back to the pain doctor where she says the 5 words NO pain patient ever wants to hear, "You are no longer stable". It's like playing Russian Roulette with a drug cocktail. You try it and if it doesn't work you try something else; maybe a higher dose; knowing nothing about what will happen; my  favorite word ever predictability? Gone; having ideas, guesses but those guesses mean absolutely nothing if the guess doesn't work.

We fight. We fight silently, while tears bathe our pillows at night, we don't sleep because we are wracking our brains with "what if''s" or "could have been's."   Every second of every day we are witnessing the ever present betrayal of our bodies. We aren't strong because we woke up and chose to be strong. We are strong because we woke up realized that we have no choice in this matter, we have to keep going, there is no alternative.  But in reality none of that matters at all. All that matters is how you view yourself. Yes others having a semi nice view of you is always a plus but it's really not what you need. You weren't put on this earth to please people, but if you do hey bonus! So just stay with us, be with us. I can't promise you it will be fun, all I can promise you is that it will be worth it. Maybe not today; maybe not tomorrow but someday, it will all be worth it. 

Monday, August 3, 2015

I'm Still Me

A couple days ago, I had just gotten home from dinner with a long time friend, when I thought about it...He treats me so normal...But IS he the type of person whose head is racing at 100mph every time he sees me, thinking, "Oh should I ask her how she feels, is this going to make her mad, OMG But I don't want to sound insensitive UGH OMG I DON'T KNOW WHAT TO DO!" I didn't think so but I didn't know, and he's the type of person where if you want to ask him something you should just do it, because he never lies to you. And so I texted him after he dropped me off, probably not the best idea, since I knew he at that time, was in the middle of Lake Shore Drive, but nevertheless, I texted him. I asked him, Whenever we are together, do you ever think of me as your sick friend? Do I still act the same? Do I act sick? Or do I act totally normal? And honestly I totally had no idea what his answer was going to be, because everyone acts differently to other people, but to them they could think it was totally normal. and he said exactly what I wanted him to say. He said, No you act completely normal. If I didn't know you were sick, I would never know. And I can't thank friends enough for saying this.

People ask me all the time, how I cope with it, and even I think it's very cliche to say this and half the time you never believe it until you go through it, I didn't either, but you really do get used to it. I had heard other people say this and I never believed it until I went through it myself, "You get to the point where being sick becomes the normal, because I never feel good but then you just get used to it so it takes being really really sick to even know there's anything wrong", and that's really true.The thing I have had the biggest problem getting used to is the fact that one of the best rehab places in the country, that will remain nameless because I don't want them to find my blog and possibly send me to prison, didn't handle my therapy right at all. The only part of my therapy there that was beneficial was my speech therapy, which all of you can see is now just fine. But that's where it ends. My leg still feels like I have a 5 lb weight on it and in fact will continue to get worse over time, until basically I am unable to walk/put weight on that leg at all, And so about 8 years ago, I got orthotics, but being a teenage girl, I wanted to be able to wear cute shoes, and so I sort of tricked my mind into thinking, oh you only need to wear them when you go for long walks, and then I barely did that......I guess you can call it my version of teenage rebellion, I know you're thinking, OMG if I was going to not be able to walk I would wear them all the time! What are you  thinking!? And I know on it's face that's what it sounds like, but it's not that simple. I wanted to be normal. I was a girl who had just gotten her entire identity stolen from her in a matter of 10 seconds. In the amount of time it took to snip that one blood vessel, my entire 17 years of becoming comfortable in my own skin was taken away from me. But now I'm seeing what my not wearing orthotics for basically probably 6-7 years when you count up the total number of days I didn't wear them, has done. Now every pair of shoes I own, I tell what foot they go on by looking at the front of them. If the front is totally demolished, I know it goes on the right foot. Because the way foot drop works is it makes it so the front of your foot can't really lift itself when you're walking and so you drag it along the ground for lack of a better term. I also now use my left hand to do virtually everything, not necessarily because I'm lazy, I learned that the area of the brain where I had my bleed, in the easiest terms, if you're right handed and you do something with your left hand, your brain says, What are you doing? You're right handed!? Mine doesn't anymore. In fact, when I'm using my left hand, my brain forgets that I even have a right hand. I probably could have written this entire thing with one hand and not even have known it.(I didn't by the way, I'm just saying I could and probably wouldn't have noticed.)

After all of this happened, my admiration for my doctor sort of disintegrated. Once I learned what he was "Supposed to do" and then "totally neglected to do". I told my mom that I was so mad at him. Why did he do this to me!? And she gave me one of the best pieces of advice I think I have ever gotten. She said that the one way I can show him and the whole world that I can bounce back, is by being happy! Now at the time, I thought that's easier said than done, I went to bed nearly every night wanting to cry. But now looking back on it, even though I had my days, for the past 3,016 days since the stroke, I've been happy for most of them. And I've asked my mom through a lot of this, "Is my personality still the same?" and she told me, "You're a little more reserved, or cautious is a better term for it, but you're also much more endearing, and compassionate, and I'll take that any day." And I guess I will too.......