Here is a message I sent to some of my facebook friends, feeling it was now necessary to let them know of this new life of mine.
Good day facebook friends,
I am not sending this to everyone. Only the ones of you that asked me what the * hell* l am i talking about in some of my post. I dont like drama, cant stand pity, so i have not gone “public” with what’s happening to me.
If you receive this and dont care, please disregard, as you will not hurt my feelings. Just stop reading right now. Truth is, i dont want anyone to feel left out and If i have the sightless consideration for your feelings, you are receiving this. Please excuse some of my vocabulary *smile* im just a honest person and yes, it might be shocking that i do use bad language sometimes… *sigh*
As some of my closest friends know, i was diagnosed with a inoperable brain tumor last June. It is not cancer, but its drastically changing my life. I had to stop working and many other things. For the ones of you who already knew, this is the update I promised. If you speak french, bare with me and give me another day. Until then, you can practice your english :))
I had my “maintenance” appointment at the neurologist. yesterday. She didnt tell me anything i didnt know. Told me to monitor the seizures and call her if it gets stronger (they are mild, only me know its happening) and once it gets stronger we should consider meds) these meds really fuck up your life, so i want to wait until they are really necessary.Also monitor the headaches. They get pretty violent and if i get physically ill fronm them, i have to go to the ER because it can mean im having a small stoke. I was also told I have to avoid any activities that rises my heartrate, rises my blood pressure, or give me stress. (is that possible?) haha It can literally give me a stroke if my tumor happened to be bleeding. (Its a mass called Cavernoma that often stays inactive but mine happened to be very active) So lovely … i’ve always been very active and productive. this is like being someone im not. I can never workout again, or run, or whatever. No rough sex. haha its ok, was never really necessary to our satisfaction anyway haha. im not sure my husband wants to kill me while having sex… hahaha SO its basically being told “sit on your ass, dont stress, dont study” Its crazy how this is what a lot of america is doing, but to me… its the end of all things i love. I was so going to go back to school and study, probably nutrition, but i went to the library and got some books to “test” and focusing, reading, give me such strong headache i threw the book across the room and cried my eyes out shouting “mother fucker this so unfair”. Anyway.
I was told i will be very lucky if i am not completely paralyzed some day. This is like MS, so im just slowly being disabled, but when i have a “bleed”, it speeds up the process. This Cavernoma is deep into the blood stem. But unlike what i was initially told, this is not a “can die any day” sentence. If I am careful, it will keep my chances of major strokes decent to a point where i will have small ones first. Aneurysms from the bleeding are what’s more dangerous, but they can happen in anywhere in the brain so it could be operated on, and im having MRI done 3 months to monitor that. The only med I am on right now is a anti anxiety that people in my situation take, just to keep them as calm as possible. It has not affected my mood at all, but i can say i do feel more “mellow”. Lets’ say i just dont give a shit. hahahhaa I bet Pot would work good too. teehee (only smoked it once and choked tho) I will laugh if some day its the thing keeping me alive. Me, being prescribed pot. *snort*
I have to avoid sugar and salt. POO, but its GOOD because i cant workout, so nutrition is my main way to stay healthy. I still want to try yoga see how high my heart rate stays on that.
SO, i feel pretty good. I have a handicapped sign for my car, which i rarely take advantage off because i feel others need the spot more than i do. Yup, im still me haha and i have a cane, which i try to use as less as possible as well. Its really pretty tho, its purple and says “hugo” on it. he’s ma man! haha
I started corresponding with 2 death row inmates.. Call me insane, but i did research their crimes to make sure they were not child rapist and women serial killers. If you have netflix, watch “solitary confinement” documentary (national geographic) and you’ll understand what drove me to this. I NEVER knew this was so common and i cried like a baby watching that show…Some of these men shouldnt even be in prison to begin with (solitary confinement is not just for murderers) I strongly encourage you to watch it and find a prisoner to write to and keep sane on http://www.writeaprisoner.com This might become a cause of mine. I think this is going to help me a lot… i might not have done a crime or deserve what’s going on, but i understand how it is to not know if you will die in a week, a year or 10.
Love you all
Eat your veggies smile