Saturday, June 8, 2013

Progress Update

I guess I am due for a progress report. haha Once a month seems right.

The Famous Eyes:  I am very happy to report that it has improved so much!  I still see double but mostly when I look down, like going down the stairs for example. I say mostly, because I see double In the morning for about 15 mins after I wake up. Because it has improved so much, I am not dizzy by what I see anymore.

About dizziness:  It is still there, and I know the bleeding pre op caused permanent damage there... I accept it. I know i will never "not be dizzy" again.  However, what is permanent, i was blessed to be prepared for me, as I did balance therapy a year and a half ago when we thought my ears was causing me this dizziness.  I learned to use my eyes and my body a way that helps me cope.  If all over sudden you felt as dizzy as I am, you probably would want to stay in bed, and no way you would drive your car, but balance therapy helps so much (if you never had it, please see your Dr. and he will "prescribe" it to you)  My dizziness level was assessed and said to be about the same as when you've had a few drinks, but not to the point of stumbling. You are still able to control yourself, but it takes conscious effort.  So yes, I know that. I get dizzier and vertigo (when your surrounding actually move and spin) when I am tired, or elevate my heart rate or just over did it, which seem to be little but it will improve.   All and all, I am so thankful that what is permanent is not disabling to me. I have learned to live with it and I could choose to complain about it and keep me from doing a lot of things, but I chose to be stronger than it and not let it stop me.   The mind is powerful.    I also experience vertigo and dizziness so disabling and painful that I wouldn't even wish it to my worse enemy (even if i don't have any).   Imagine living your life with the worse hang over of your life, not only that, but NOT being able to stand, or walk. The nausea that comes with that, and the inability to do anything is just out of this world. So ,yes, I am one happy camper right now!!

Speech: That is something I never really talked about because I dont focus on it. However, I dont know why, but it has been a bit more difficult lately, as if I regressed.  I have been more tired as I am trying to have a normal routine etc, and I know that affect it.   I find myself stumbling on my words a lot when I try to talk as fast as I use to (what I call "when i try to talk normal") and I do... I didnt talk THAT fast, but had no problems coming up with words .haha  I find myself "falling" as if i was running, get back up, rub my knee, limp a little, and start running again, to fall again, on and on and on all day, a very uneven gap in between. hahaha   Its not something I dwell on but it does get frustrating. However, that frustrates me more is when I am told I said a certain word when I seriously think I said another. I do that with reading, too.  I really cant explain that one.. I never notice when I do that. I do that in texting too apparently. I should have a comedy show.

Hearing:  I had a hearing test last week, or was it the week before that... and I was very very surprised at the results!! I have been more "deaf" according to how "I" hear, but the ENT couldnt believe it when my hearing test came out with such a huge improvement he said he never seen anything like it. Not only my 3year old gone ear drum is back , without any surgical procedure to it (I had a failed tympanoplasty 2 years ago) but my hearing went from 60% in one ear and 40% in the other to 80% both.  I have never seen a Doctor so puzzled in my life. He said "wow they fixed your eardrum too??" and of course i said "no..." but he asked "was your cavernous malformation in the Pons?" and I said "yes" he said "AHH wow.... it really was disabling your hearing badly". However, the reason I still feel as, if not more, deaf, is because I have severe Tinnitus. It is so loud... in my head... 24/7.. that this noise overpowers a lot of noises and tones.  I had a test and the tinnitus scored pretty high.  They made me listen to different pitch noise and when you cant hear them, it means its the same tone as your tinnitus. He was surprised that I didnt come in the office complaining harder about it... I am happy that this makes him want to help me, but I also know that tinnitus is just a symptoms, often permanent, caused by an injury or others ,and if that injury cannot be fixed, so is the tinnitus. Brain Trauma cannot by "fixed". You cant go in and fix what was disturbed. But, with time, it can go down.  I was offered a special device to put in my ears to help mask the sound a bit  but i am not sure what it does exactly. I have had tinnitus since I was 13 but it was mild compared to this. However, I am used to have a  flat high pitch noise in my head.  I dont know what "silence" feels like, as when there are no noises around me, the tinnitus is worse since that is all I hear.   Maybe that is why I am the house where all the kids come and be noisy and it never bothered me... Its already noisy in my head. hahahahaa   However, too much noise, too long, affect me in different way then hearing...

If you never thought that noise could make a person dizzy, nauseous, and completely confuse, think again. haha Being in a crowd is horrible... music in the car with people talking at the same time is horrible... any mix of sounds i guess. But, I am not going to expect people stop living their lives because noise bother me. I deal, I survive. I am not a queen and I am not going to expect to be treated like one. If I am about to faint and I need "silence", I will let you know, trust me.

I do think that my aversion to complaining hurts me sometimes. I have had a rough week. I really, really dont want to just lay around all day, put my entire life on pause, act like I had brain surgery  with a year long recovery. (hmm)  My house has dirt places it didnt have any before... I didnt "clean" since January haha  The kids are very good at doing anything I need help with. Never complain!  But some things you know like me only a mom can "clean" the way its supposed to. I dont stress about it. I say that to show that as a "ex" cleaning lady, for me to not just "do it" means a lot. I obviously know it would only hurt me. Could I do it? probably. I could probably mop my floor or wash the dirt off my baseboards and wipe my cabinets down, but I also know the room would spin, i would possible faint and feel sick for days because at that moment, I felt I had the energy and ability to do it, but after the fact, i would realise it was too much for me to handle. SO, I am being good :)  I really think I do know my limitations... but this week I realized I dont. It felt good to me to be "as normal as possible" but it also showed me that I just cant...

What is normal? People ask me "when are you going to be back to normal".  I have been saying "oh what I recover in a year is what im left with" , but lately, I have come to realize the answer is "never!" What is "normal"?  It is being back exactly how it was before.  What if I was a couch potato that never takes my kids out to do anything, dont clean or cook, heck i'd pretty close to  being back to normal (dont mean to offend anybody, just giving a example)  In other words, I am learning to know my limitations, and day by day see what is "normal" for me at the moment. I have no expectations. I am happy with every improvements.  Whatever I will have had recovered and healed months from now, that will be "my" normal.

I got side tracked...

As far ar all the other deficits... sudden confusion, fog, short term memory loss, processing issues... I wont lie, It is depressing sometimes.  Certain situation triggers those things to happen. Too much noise, too little sleep, or just NO reasons at all, out of the blue!  There are just one explanation to those things and it is that my brain was disturbed. I dont know how long this will last, I dont focus on it... I do the best I can. The ones who love me I only hope that they love me enough to understand and be patient when i make a mistake... to forget things, to be confused and not understand... I hope they love me and care enough about me for that.

Mobility:  Considering I was told by my local Neurologist I had 95% chance of being paralysed if ever needed this surgery, I think they would say I broke all the records.  I walk just fine. It is still work for me, and I dont have "my" walk yet... a fast steady walk that could run in heels haha but I appear normal, I think. haha  I cant walk fast, and I cant run, but I think we can accept that :)  My legs look different. They dont look bad, I dont think, but its like I can see the muscles work when I walk and the "bone" move. Ok, enough info. haha

Fine Motor Skills: I never talk about that... but one thing that has been hardest for me is that I have completely lost my handwriting.  I could not write/form letters when i got home, and I very slowly developed a handwriting that can be read and may appear normal to people...  but to me, its not mine... and because of that, I feel like i "cant" write. I know I have to accept that I may never be able to write normal again. I have to hold my pen a specific way, than take my left hand and stabilized my hand. I gave myself a new Signature. I can do a cursive L, than I scribble.  Its fast and easy  haha  Putting eyeliner on is definitely easier now than it was a month ago.  I really really should of taken pictures.

I have been able to drive again.  I put special blind spot mirrors on the car before surgery because moving my head makes me so dizzy. Anybody can get those mirrors, but they have been so helpful to me. They really make all the difference in my driving.  However, I cant drive for very long at a time.  I had to take the kids places a lot one day this week and I am still recovering from it. However, I am so glad that I can drive... its a huge concern lifted off my shoulders.

Well I think that sums it pretty much about all. That sentence didnt make much sense, didnt i? I will keep it anyway. I am having a brain fart. haha I love you all so dearly, you have been amazing :)