A year ago, the first week of January, I had a follow up MRI for my Cavernoma, which was diagnosed 6 months earlier. Summer of 2012 was a horrible one for me, following a spring bleed and the onset of seizures. In the fall, however, after I quit my job and spent more time resting (not that I had much choice, doing anything was a huge chore) I did feel better. By December, i was feeling very "off" again. I knew something was wrong. Maybe it was ready to bleed again, I was not sure, but all I knew is that my more peaceful fall was just an illusion. That MRI result seemed pretty positive. The cavernoma had shrunk, he said. My husband seemed excited, but I was skeptical, simply because what he told me didnt match the way I felt. I found out later that cavernoma shrinks before they are ready to quickly fill up with blood and bleed again.
It is so hard to believe that this MRI was almost a year ago in less than a week. It seems like yesterday. The Year 2013 was really all about this brainstem cavernoma of mine. Now with year 2014 comes this new chapter of my life without it. I still am not sure of what time of year we are sometimes, and for some reason, its Friday a lot... Friday or Tuesday. hahaha
Ok, where was I? Oh, 10 months post Op update! haha Once I reach the famous one year mark for brain recovery, I will go over an earlier post of all my issues and update. That will be awesome. haha
For now, I can say that physically, I feel so much better than before the surgery. Of course as you know, since I woke up unable to feel or move my body, I would of never thought this would be possible so soon. I expected a lot longer than this to regain control of my body, but in all, it was the first to come back. Physically, I look completely normal. I walk without a limp, which I did for a long time, before, and after surgery. I dont bump into everything like I used to. I dont fall all the time either. I am physically stable, vertigo being very mild, as well as dizziness. I even wear heels and walk in them just fine. Can I get a Hooray?!
As far as working out, something I did for years, at least one hour a day, sometimes more, I still am not there. The reason for this is not so physical strength. I am a lot less strong than I used to be... but its mostly my breathing/heart beat that is the problem. If i do anything strenuous physically, its as if I cant catch my breath. My heart rate and breathing all get out of wack. The brainstem controls these two, so i guess its taking some time to be back on track. Its as if they are dont go together.
My right hand is doing better. I take on the crochet. haha I crochet scarves for my sister and 2 friends for Christmas. When i started my first one, I wondered what I got myself into. My hand not only hurt so much, but just wouldnt get that yarn where i wanted it to go. haha SO, I thought myself tricks, and discovered that my fingers work better if i twist my hand a certain way. For months, I just tried and tried to use my hand and finger the way I used to. It was discouraging to see that no matter how much I tried, how much therapy I was giving it, it didnt improve. I finally realised that it was probably a permanent damage and it was better for me to learn to do things differently. So I did. I can now write better. It is not my handwritting anymore. I stopped trying to get that back, but it is some handwritting. hahaha I gave myself a new signature, and my handwritting may not be pretty, but its better than not being to write at all!!
I am coming to the realization that my permanent "damages" are about my memory, processing, understanding information, focusing. I like to call myself a dark hair blonde. Jay does make fun of me, and depending if I am in a "this is kind of funny" or "this is discouraging" mood, I laugh with him, or get discouraged. haha It is hard to feel like i "used" to be smart, to now feel like i have such "dumb" moments.
**By the way, this is my 5th time editing typos of either wrong spelling or using the wrong word, something I do a lot. :)
The tinnitus is pretty intense too. Its not fun. Its constant. I make a big effort to push it out of my mind, as loud as it is, simply because if I let myself think about it, and what it means, i get into a very deep sadness. I am "only" 35 years old and I will always have a loud siren ringing in my head. Ok, enough said, see what i mean?
|My sister offered me this mask for Christmas,|
to replace the eye patch I had on last year :)
Speech. I slurred my words so much at first! Now, its funny because it only happens when I am sick, tired, or if my brain is dealing with too much to think, or too many sounds. My brain is not good at multi tasking. haha So, when i start slurring my words, its because I have too much going on. haha
As I got to do more "normal" things, I discovered different things. Like counting. Its really hard to count past 35. I get to have to think veryyyyy slow to get the numbers right. There are many different things like that. haha
All in all, i think my biggest challenges are all invisible. I was not only 3 days post op and people tell me "you look so good, you dont look like you have all these issues" Yet, I could not walk and do much. haha so imagine now... I run my own errands, I even volunteer at school (its difficult by the way, i see it as therapy haha) and do all that a normal person do. I dont blame people for telling me "ohhh you are back to normal" even if it hurts me. I cant explain why it hurts me. Not a "oh gosh i am so hurt" type of hurt. More like a pinch. Because I know what they mean by the word "normal", as of "as before", and its never going to be "as before". Normal is what your life is about day to day, what comes natural. You can be confined in a wheelchair for years, all your life, and people will view that as "normal" for you. I want people to understand the new me, and that become the new normal... not to compare me to what I was before. They dont see that, so i get that... its more about people not understanding that I have let go of this past "normal", so they shouldnt think that this is what I aim for. Its gone. I am running towards a even better normal.. one that I thought impossible. One that I was told was gone forever. A normal that I thought was going to be living in a nursing home, with my kids visiting me.
Normal?? No, things are not normal anymore... They are extraordinary!!!
|January 1st, 2014, 10 months post op|