Friday, December 24, 2010

Merry Christmas everyone

Well I've certainly done a crappy job of keeping this blog up. Life has most assuredly gotten in the way and I have spent lots of time 'finding myself' in my retirement. I've also got a bit lost in the holidays in that it takes lots of energy to keep the house picked up and my new job of being house person. Extra effort for having people over and the like as well as just struggling with how much, and what, I want to write about. I love to write and it is so cathartic for me that I'll never stop that's for sure. It is just a case of having other things to do and not having an abundance of excess energy. My limited energy was used for work and life. Now work is too much so it's now just life and I am simply worn out at the end of the day when I used to blog. Thank God this isn't a job keeping this up or I'd have been sacked for sure.

We also just lost our baby doggy Pooka. She was 13 years old but will always be our baby. She was literally the best dog I ever met. Even dogs that I knew that were uber trained and uber obedient. She was the kindest 'being' I've ever known and didn't have a mean bone in her body. She was our CONSTANT companion. Everywhere we went we took our Pooka. She never missed a single thing we did except for one time when we boarded her to go to Florida for a week. And when we got back the staff at the kennel were upset that she had to go. Literally everone loved that dog. We'd be camping and the dogs were supposed to be tied up. Not Pooka. She didn't know her boundaries at camping, but nevertheless she would never wander off. She just KNEW stuff. We never even trained her per se. I remember wanting to train her to sit. I had gotten some treats out to prepare to start training her. It took one treat. No shit. And she never forgot it. Shaking was something she would just do when you held your hand out. And she always came when you called her although we never, ever trained her to come. Once again, she just knew.

And my MS? Other dogs would crowd me and get too close and get their toes stepped on. Again, she just knew and gave me wide berth. She picked up on things and was so special. She slept on my daughter's bed since my daughter was 2. She didn't make a peep and would only let out a single 'woof' when someone came to the door. She was the perfect pet and became our very good friend. We miss her terribly. There will never be another Pooka but we know that, the bar she set is too high. But that also made it so we will always have a dog. She spoiled us. but some time has to pass until we think of her and don't cry but laugh about the good times instead. She was just so good people would just be amazed. They'd be around her for a little while and everyone would say "man that is a good dog".

I could carry on forever about her virtues. I've attached a picture of Pooka defined. Even when she was a puppy she was very gentle. My daughter, at two years old, was typical in that she would get her face too close, or squeeze the puppy too hard or whatever. But most puppies would scratch and bite as they were playing and little kids always get 'hurt' by puppies. Whethey they get nipped with their needle teeth when they are just playing, or jumped on and knocked over or whatever. Not Pooka. This pic says it all. She was SO gentle with Sarah. This is the day we brought her home. At 8 weeks puppies are just out of control. Pooka was just the gentlest soul I've ever known and she was simply the best. The other picture shows how patient and tolerant she was. Sarah is an only child (well her brother is 15 years older than her so it counts) and she always used Pooka when she played as her playmate when friends weren't over. Here she is carrying Sarah's arrows around. She would put capes on her, bundles of arrows, all kinds of stuff. And Pooka would just tolerate it. I'll miss her so much.

Don't mind the dates on the pictures. These are pics I took of actual photographs!

Wednesday, December 1, 2010

Neurorehab takes its' toll!

Since I'm now over the full on analyzation of what having the 'liberation procedure' done is going to achieve, it's time to turn the page. Having the procedure done I have found is not something that keeps changing. Once the initial improvements were realized, that's pretty much it for me I'm afraid. And as I've said before, now it's on me if there will be any more improvements in the way I function and my quality of life. So enter the Kettering Neurorehab and Balance Center. Going to this type of therapy has been wonderful and heartbreaking all at the same time. Wonderful in that there are things they have me doing that actually impact my QOL positively, but heartbreaking in that doing vestibular exercises and some of the rehab puts a marker on how far my central nervous system has deteriorated. And don't kid yourself, your CNS controls everything. I mean everything. We all have our own hard drive and MS messes with that. So it really sucks when something is screwing with it. I can't just reformat it, although that approach has been tried (google - revimmune).

Exciting things like standing in a stationary position with one foot in front of the other and staring at an object on the wall are just some of the stuff that I'm doing. It really makes you realize how far things have gone awry when you can't even do that without falling over. But the rehab of my vestibular systems is what's going to hopefully help me be less dizzy and have better balance. My big muscles are still strong. We did strength and endurance testing and I'm still in the 70th percentile compared to healthy controls on things like a 4 minute walk and things like that. So that's heartening. But it's awful disheartening to not be able to stay on your feet when your feet are together. It just is what it is to be cliche.

But the good thing about all of this stuff is that it is allowing me to work on what I really need to work on to keep functioning. My old self just wants to push out reps on the Bowflex and have that be a panacea for what ails me. But that doesn't get it anymore. I need to attempt to work on those parts of my brain that aren't allowing things like balance and stability to work right. It's hard to be able to bench what I pretty much always have, but not be able to do leg lifts. To be able to hamstring curl a normal amount of weight, but not be able to walk a straight line. No pain no gain still applies, but it's not simply a matter of just working to exhaustion like it used to be. That is detrimental now anyway. So I'm doing things like laying on my side and lifting my leg off the floor about 2 feet for a five count because my hip muscles somehow have about disappeared. Things like standing with a hand on a chair and lifting my leg up until my knee is bent at a 90 degree angle. Dr. Lew simply does not have the answers to make his body right anymore. Until I went to this place, I had no idea that my quads were just peachy, but my hip flexors have all but gone away. So all the things that can fix whatever ails a body coming from a healthy place are what I'm good at. I suck at figuring out what to do in this arena.

So my new therapist is setting me straight and it's eye opening. Self perception on my part is all but gone. I still THINK I can do way more that I actually CAN. That's good in some ways, but it leads to me doing too much on a daily basis. I'm learning that I need a massive amount of breaks when I'm doing something. I mean one load of clothes folded and to keep from being in pain or going to a place where it will take hours to recover I need to take breaks all the time. That shit is im-freakin-possible for me to do let me tell you. If there was ever someone born with ants in their pants it's me. I used to watch TV standing at the mantle for God's sake. Seriously. That way at commercials I could bolt off and do something; what? who knows, but something. I have more nervous energy than five people I believe. I just don't like to sit down. Well my hand is being forced because I don't like being in pain or being wracked with vertigo either. So I got a little 'sand' timer like Days of Our lives. When I need a break, I have to pull that dude out of my pocket and wait for the sand to finish dropping. It's so much harder for me to do than it sounds!

So here we are. My disease has forced major, actual behavior changes on me once again. I'm OK with it don't get me wrong. I really have no choice so it's not like I can choose another option. Well I could turn into a completely sedentary blob, but I can't do that either. Not until my hand is forced that way since that's always in the back of an MS patient's mind. It's just so different to be 'rehabbing' without the thought of functioning BETTER. I mean this is to make is suck less, which I suppose is the better option than to just let it suck to it's max. potential.

But it does give me some hope. And you all know how I feel about hope. Not hope that I'm going to recover, just hope that I can function at the highest level my burned out CNS will allow. Not to mention the fact it does give me some direction and a goal to work towards. It's getting hard to be OK with all of this decline that's for sure. But once again I have to pull out my mantra of 'it could always be worse', because it surely could. So I'll be doing lots of stuff that I would have laughed at a few years ago just to keep functioning, but whatever it takes. Not really working out per se, but doing things that are supposed to pinpoint a muscle, or make a nerve fire are what I've been relegated to at this point. I have to do it, my other option is to just spend more and more time on the couch until just getting up from the seat is a chore. It could get to that for sure on its' own, but with the way my muscles atrophy, it could get that way by me sitting around too.

This disease is insidious and I hate it. But I have to look it square in the eye if I'm going to do what's right. There's no fighting MS anymore. I'm not going to win. But I can at least make sure I don't let it take me a second before the point where there really is nothing more I can do. Hard to stay pumped and motivated with that being my mindset, but nothing I can do can make me not have this. So I go back to just trying to deal with this with grace and not succumb to the dark thoughts and imaginings of what COULD happen. It scares the shit out of you when you think "if I go downhill as much in the next five years as I have the past five years, I'm flat fucked", so you literally have to learn to live one day at a time and not let you imagination take you away. Keeping those out of your head is hard at first, but not sleeping and not eating and shit makes you learn quickly how to push thoughts away and keep them away. It's all part of the one day at a time thing. Today I walked in here to make this post. So draw a line in the sand for today. I'm walking. If I can't tomorrow, I can't let it eat me up today thinking about it. I have to simply respond to what is actually going on, not what might be going on.

So I'm trying to work on exercising those things which control my muscles, and that ain't easy for sure. I'll keep you posted and let you know how it's working out, I always do!