Wednesday, September 1, 2010

TBI.. TrAuMaTiC BrAiN iNjUrY…

So at my visual appointment.  My very specialized visual appointment.  With Dr. N I learned allot.  I wish I could remember it all.  But he gave us two huge stacks of paper so we could learn more.  I evidently have a TBI.  It effects my balance, makes me dizzy, concentration is highly difficult,etc!  With my Ehlers Danlos Syndrome it makes things even more tricky as my joints wiggle out all over the place!

And it totally explains why Physical Therapy was helping but not fixing anything but keeping my muscles in order as much as possible!   

I am not going to list off more because at this point, well it seems pointless.  Suffice it to say I have some major issues, and they are all in my head!  Jason loves saying that!  Not psychologically, (although the Dr. was amazed that I hadn’t tried to commit suicide and wasn’t in a gurney. HE ACTUALLY SAID THIS! … not sure how to feel about that, good I guess.  Thank God for my MK attitude and growing up on the farm is all I have to say.)  So as I was saying not psychologically, but actually problems in my brain! 

I can only tell people that things are different now.  Describing the differences is like seeing through a muddy river.  Impossible.  I have known that I couldn’t think like I did before…. I can still think.  But it is slower, harder, more muddled.  Walking is the same, I can still do it, but it wears me out and doesn’t feel safe to do.  I feel best lying down, and there is a very good reason for that, of which I will explain later. 

Actually I’ll be explaining more later as I am just digesting this news.  I am trying to read the stacks of paper.  Which is VERY difficult, because it takes me forever to read things, and then actually comprehend what I have read.  But since I have the time, this is what I do, just attack everything bit by bit!

I told Dr. N about how I used to be able to do tiny work with my hands.  I can still manage to do it but it is an extreme amount harder.  The subject got on threading a needle.  He asked if I would just give up with the process because I had found it too difficult to do?  NOPE I said.  I don’t give up!  I figure out a way to make it possible!  I have.  It takes me longer to thread a needle than it ever has in my life, and do I do it often?  NO!  But if I need to I figure it out!  And I can! 

I remembered trying to do this a while back and I became so frustrated!  I couldn’t understand why I couldn’t get the needle threaded.  I finally put my two hands together and did it by feel not so much by site.  Therefore lining things up physically instead of by line of sight.  YEP!  I figured it out.  It still takes me longer to do this than before.  I would usually have the needle threaded on the first shot barring any stray thread parts. 

This gives you one example of what it is like for me. 

I told him also that I couldn’t explain why, but the more I would drive, the less I felt I should actually be behind the wheel.  It wasn’t as if I COULDN’T drive.  There was just some thing not right with me driving.  I can pass the test etc.. I did.  But driving became so much harder for me.  I LOVE to drive!!!!!!  I can’t tell you how much I LOVE to drive!!!!!   Allot! 

I also thought that it may be psychological due to the accident, so I just made myself do it after the accident.  Not often, in fact if I didn’t have to drive I wouldn’t.  But things happened during the course of my driving that gave me clearer indications that I shouldn’t be behind the wheel.  Disorientation.  Not nearly as fast of responses as I had had before.  It was different, harder.  I definitely did not feel it was safe, so I stopped driving when ever possible, and later I stopped driving at all! 

Dizziness.. yup, I’ve had that as well.  Really couldn’t describe it in the beginning, after the accident, but also could hardly move my body as well, so there wasn’t much opportunity for me to be moving around much, in fact moving around has been so much harder.  Still possible, but the amount of energy it takes for me to do the simplest of things is just mind boggling for me.   Things I would have had whipped out in no time take me 20x as long to do and I am exhausted afterward.  Besides the fact that I am so slow in doing them. 

So I have TBI. 

I have lots of test results that prove it!  It doesn’t show up on a CAT scan!  I am still as smart as I was before…. that is not saying allot!  I was no scholar.  But I was able to remember peoples names and faces very easily.  I can no longer do that!  It is frustratingly hard for me to remember faces now, and if I do, getting their name to come to my mind is harder yet.   I work at it by playing games like solitaire, and bubble beaker, giving myself challenges and things, and I have gotten better at it than I was after the accident, but not great at it like I was before. 

It is a HUGE RELIEF to know WHY!   To not only have a doctor who will back me up with what I am saying, but to have brain wave scans that prove it!  Eye test results that explain it!  I even have something wrong with my inner ears! 

He was just amazed that I was standing and could put a smile on my face.  I won his trophy (figuratively speaking of course but he did actually say it.) for being the most damaged in this particular area of my brain than he has ever had in his practice.  Now that is something to be proud of wouldn’t you say? 

OMG!  I have to keep a sense of humor about this all.  Jason was about ready to break down and cry… with all of this news.  He sat through the over 4 hour long process with me.  He watched every test get done, he saw every result, he’s a trouper that one!  Thank God! 

He shared more too… but I won’t go into that just yet.  Another day another post.

I have a feeling I am going to be sharing allot of information on here.  He is one of THREE PEOPLE in the entire country that are EXPERTS at this!  Thank God he lives in my back yard.  Even though what he does is so amazing, they are just now teaching it in medical school.  He’s been doing it over 20 years.  He explained this process to me.  I’ll just tell you you don’t really want to know!  But I will say there are more treatments, tests and things like that available than your own personal doctors could possibly know about.  The trick is being persistent enough to not give up and to keep searching for the ONE who can share what you need with you!

I feel so blessed!  So relieved.  So vindicated! 

Oh and I am getting glasses! 

Yes I have nearly perfect vision, and I am getting glasses! 

                                                                        More about this later!


Pink Doberman


Roseanne Scurto said...

Ya know... us girls with brain injuries have to stick together! I am so glad that you have some legit answers to what has been happening to you, that HAS to be reassuring, albeit scary! I am sure you have a lot to learn as you go through this process but half the battle is won in knowing what you are dealing with. Love ya bunches and ya know we are here for you both anytime, 24.7.365... hugs.

Pink Doberman said...

THANKS Oodles and Bunches!!
Hugs back atcha!