Friday, August 3, 2012

Reality

I have a deep, bleeding cavernoma.(Some doctors call it a tumor, but it is mostly a “condition”, because it is not cancer) I have known for about a month now. I found out it cannot be operated on because it is to deep  into  the brainstem. I really was caught by surprised because i totally expected it could be fixed.   I feel like the cavernoma is the bullet in a russian roulette game… which in fact, is pretty much what it is.   It can change my life forever in an instant with a stroke, slowly with ongoing symptoms , kill you with the high risk of brain aneurysm, or simply leave you alone for a bit.   There is no way to know when, and how.

Other than having been constantly dizzy, light headed and nauseous for more than a year, So far… i have bad days , and good ones.  The bad days are really bad, and the good days feel awesome when they come.   I feel alone a lot of times, which is not to be taken personally by anyone, but it really is a “invisible” illness that sometimes affects me so much, yet people around me dont “see” it… because its my brain going crazy… affecting me.   Also, it is so inconsistent, one day is different from the next, even one minute is different from the next… so again, its not “real” for anybody else but me… I really dont think anybody can understand until their own brain plays Russian roulette with them.   I have never felt so alone in my life.

One day at a time really becomes real.

I dont “feel” like im going to “drop dead” any minute, I feel like im going to see my kids grow, that my symptoms are going to stop getting worse, and that it will never bleed again…

but reality have been proving me wrong pretty quickly lately. Maybe its temporary, how bad it’s been affecting me, but from what i read, once you’ve experience confusion, personality changes (in my case, i believe it was needed, i’ve always been too nice, and now, i just dont want to put up with  $hit- hahahaha  ) and weakness and numbness… everything i read, people stories, didnt have a happy ending. Not necessarily death, but really poor living condition, and i dont mean money.   Physically, i am ready to deal with it. Mentally, not so much.

On a medical note, here is a bit of infomration about how this is affecting me.  I am experiencing a lot of these symptoms already, but here is an idea of what this condition does to the brain.

What can be affected when a deep cavernoma bleeds?  The brainstem, thalamus, and deep cerebellar nuclei are very important regions of the brain.
The brainstem is that part of the brain that conducts all the nervous impulses from the body to the brain (and vice-versa). It occupies a very small volume and is no more than an inch in cross section or length in much of its length. A small bleed into this tissue from cavernoma can lead to almost any part of the body being affected in strength, co-ordination (including walking, swallowing, vision and breathing) and sensation (all modalities including pain, temperature, touch, knowledge of the position in space, hearing and taste). The brainstem also contains a very important centre for keeping a person awake and damage to this centre can lead to coma.


The thalamus is a little higher than the brainstem and connects to both the cerebrum and the brainstem. This area of the brain acts as a relay and process centre for nervous impulses coming from the body (and other regions below the cerebrum) that are entering the cerebrum. It is important for sensation (including pain, temperature, touch, knowledge of the position in space and vision).


I dont like drama. This is simply… reality.  I dont like it right now…. but that’s what it is.  Being scared, mad and sad forever wont help… so I just have to accept it.  Maybe not this minute, but the next, I will.

Thursday, August 2, 2012

Changes

I always thought that people who have the inability to change anything in their routine, person or life, are too comfortable, not adventurous enough, or simply lazy. I still beleive that to some degree, but the past few months have made me see “changes” in a whole new light. 

It actually showed me that this kind of change is the easiest. The more comfortable you have been in life, the more you are likely to hate changes. When I left my ex to be in the street with 2 young boys, that change was harsh, but it was quite easy. Easy simply because I was absolutely miserable and nothing mattered anymore. Nothing but my boys and I being free of daily emotional torment. Yes, it was easy to give up everything, eat on the floor the same food every single day, and survive with 800$ a month. When I hear people give zillions of excuses on why they can’t change their situation, I simply think to myself that they are simply not miserable enough to act, yet. If you feel unhappy but won’t change, quit complaining! 

I was at a point in my life where other than the desire to always better myself, and keep a open mind on what comes my way, I didn’t find the true need for any major “change” ( to the exception of wanting to reduce the size of my oversized behind, of course)

Then, change came. A very unwelcome, not at all expected, nor desired change.
Not a change that require temporary discomfort of change of routine or the start of something unknown and new, no, the changes that completely make you have to re-invent yourself. 


From very energetic to no more energy, from very active to having to sit because your body disables you to do the things you not only knew, but we’re so much part of you that you never thought twice about them. Changes of the very traits that defined you and made people say “oh yes, this girl, she is “like this”"

Changes of personality, changes of how you perceive certain situations and people, changes in your ability to remember things and information. Not being able to focus anymore, not being able to be… You!!!
What do you do with this type of changes??