I have been reading a lot about my “condition”. Its been good to know different views, different stories, from different people with different attitudes. I have not met anybody that has exactly what i have, in the same location... which make the difference between life and death in this case... but i am hopeful I will in due time.
Its good to know what to expect, and what what to let go. I came across so many experiences like mine. A brainstem cavernoma is either in the brainstem, touching it, or next to it. It affects the brain the same way and all considered a brainstem cavernoma because its the area of the brain that control the whole brain. It is the deepest area of our brain, connecting our brain to the rest of our body and controls everything. In other words, people like me who has it there, can be affected in all aspects of the body, physically and mentally. If I had a bleeding cavernoma in another area that only controls the memory, then only my memory would be affected.
I have already experience all the symptoms from all areas of the brain to a certain degree. It is worse for me in the left side of the body, the memory, the ability to connect thoughts and spoken words. The overall weakness, fatigue, dizziness, balance issues, light headed, nausea is normal for anybody that has an “active” cavernoma, but all other symptoms are different for everyone.
It was hard the first day I found out I had it in an area that will affect everything. I never know what is not going to work that day. Strokes are possible at any time, because I never know when the cavernoma will bleed and how much, but the signs of a strong bleed are impossible to ignore and I was told numerous time by Dr. Li that i will just “know” and to get my ass to the ER when it happens. A LOT of people have had many strokes, some 2-3 times a year, and some even without realizing it was a stroke. It was found later on MRI, which i will receive every 6 months. Strong, deadly stokes, are very rare, but stokes that can cause permanent damage to any part of the brain are very likely. The statistic shows that by the time you are diagnosed for being symptomic, to the time you have a life threatening stroke, it is about 10 years. But again, it depends how big the cavernoma is/get and how easily it bleeds. Some people never get permanently damaged from a full blown stroke.
Its basically a not knowing game. I got no choice but to play it. So, I am going to play it, play it as long as I can. Winning it for me simply means that I am not going to let it destroy my ability to be happy, to smile, to move on, to enjoy my family despite of the way i feel, to have fun with my friends despite how embarrassing it gets, be positive and drama free despite living Russian Roulette. I have never had trouble laughing at myself. I will try to keep that going.. because wow, its going to be either very depressing, or freakin hilarious, and I choose the second.
Since all this started, my body is feeling better, except the overall weakness and dizziness from hell. Being able to really hold onto something with my left hand comes and go all day. My foot gets numb, and I have already taught myself that its literally all in my head (haha!) and that my body is strong enough to hold my leg, i just cant feel it. When my foot is numb, I walk funny because instead of sitting on my ass, I walk anyway, but it feels like when you sit and cut circulation and stand up and cant feel your foot for a few minutes, you try to walk and stumble. That’s how it feels. You kind of learn that you actually still can walk, you just cant feel it. But yea, it doesn’t feel good… :/
My left side is not as numb as it was when i initially found out my problem, because that is what got me to the Dr initially. Right now, its my memory and speech that is giving me problem. I can think and speak fine, but its like both together don’t go well. I cant speak as fast as my brain think. My words stumble, and a lot of time, its like i cant think of the word im thinking about. Its really frustrating. Also, I have to really focus and think hard about any types of “when”. I keep asking myself if the boys came back from camp 5 days ago, or 2 weeks ago… i seriously cannot figure it out without thinking of what date we are, and every day, many times a day, i don’t remember what day it is. We have all done that, but this is different, its really scary for me to think this is going to get worse.
I found out that typing and talking is totally different from one
another. I am afraid that at some point, typing is the only way I’ll be
able to say what i really mean. I don’t think the people around me
really notice how hard i have to work to speak what im “thinking”. Its
getting harder and harder, but im still able to work to the point that I
do fine, but its so draining. I feel like I am taking a hard exam, all
However, the same way my left side got better, I hope that this is
going to get better, too, but then, what will be my issue? haha Every
time it bleeds, even a few drops, it affects something. Sometimes its
permanent and sometimes it heals itself to some degree after the blood
If you know me, you know that i have always been very active and
super energetic. This has hit me like a tun of bricks, and its been
really hard to accept that part. If I was someone that was never really
active before or sedentary, i swear i would make myself believe that
all i can do is lay down, have naps, and do nothing all day... but
because i have experienced what being a mother is, you have to keep going
when you are sick, keep going when you are so tired the room spins.
Because of that, I know that how I feel, and what i should do about it,
are 2 different things. The facts are, sitting all day because i have no
energy would just be a very pitiful excuse that only lazy people tell
themselves. Sorry, that’s what I think. I’m not going to get better by
sleeping 16 hours a day and lounging when im awake. That would just be
a very vicious cycle, and a sad one. But to suddenly have no energy,
after been known to “work so fast” and accomplish so much physically in
one day, that is a very very hard thing to swallow. I have to remind
myself that this didn’t define me as a person… it doesn’t mean im not
efficient anymore, it doesn’t mean i cant accomplish things. Why,
because i am not going to just “lay and lounge”. I’m not going to fall
for that ...
Tuesday, I had to do one of the hardest thing I ever had to do. I had
to call my clients and let them know I cannot work anymore. I cannot
clean anymore. I was quick, efficient, very good at what I did (cant i
brag, just a little?) I was meticulous, organized, knew what i touched
up to 2 months before. I rarely rotated tasks, because i was fast and
efficient enough to clean a whole house in 3 hours. The tasks i did
rotate, i knew exactly, 10 houses of them, what I did, and when, and
what needed to be done again that day.
The past 3-5 months, I really was literally forcing myself to work. I
know i could, and probably should of, stopped. I wanted to help my
family, and I found the strength to finish. I got more and more
confused, forgetting who i had to clean that day, not remembering if i
did this or that, last time. I knew something was really wrong. I would
be changing sheets, and all over sudden, this huge rush of weakness
would take over me. I couldn’t even lift the sheet. (I later found out that these were Simple Partial Seizures). It was horrible. I couldnt move, had to sit on the floor, and wait for this "rush" to pass. I cried a few
times, convincing my brain that I had to finish, therefore, I could. And
I did. But about 2 weeks ago, it was happenign ALL the time, every 5 mins. The more physical I got, the higher my heart rate got, the
more seizures i got. So i had to work slow, really slow, which my
clients never noticed because most of them were not home. I did more
rotation when i couldn’t be slow, when i had limited time, which made me
feel terrible because that is not the way i do my job.
So, stopping my business was heartbreaking. It was going very , very
well, and my sister did such a wonderful job on my logo, my website. I
was proud of this accomplishment. It made me feel good about myself. I
do want to find something else to do, because the money i made was no
extra money, it was needed!! Its going to be a difficult adjustment,
but until i find something else, it’s going to be difficult. Every
single stories I read about people with this condition have had to quick
their job. One was lawyer, archeologist, teacher, computer engineer and
even a Doctor! People with great jobs! All of them were very active
and in good shape, too. Everything changes!
I will find out next week what is the treatment plan... its going to be a long journey...
Ready, set, Go!
Anyway, I’m going to let God role the dice, and play this game.