I Rant

Rant 2 : Health

I am sick. There it is I said it. After years of just brushing off my symptoms as stress, overreacting,  or something that "happens to everyone", I am finally able to say that I am sick. 

My friends don't like it when I say that, when I admit that something is wrong, and something is seriously wrong. It started first with headaches after I got a really bad concussion, so we blamed that, then it became migraines. Migraines that hurt so bad I couldn't see or walk properly and needed help to get to the nurses office. Gym class is why it acted up the most, the lights, loud sounds and physicality of it all was just too much for me. Teachers usually chalked it up to me being lazy; as I am a larger person. One teacher I had in grade 8 believed me after seeing my eyes during a migraine in the class. Apparently my pupils were huge and my eyes looked glazed over, I insisted on playing (not wanting to get in trouble) and she pulled me out right away. Seconds after sitting on the bench I can remember a white-hot pain just washing over me as I stared at the gym floor. 
There was another teacher who helped me realize that maybe something was wrong and that what was happening to me wasn't normal. I had gotten a migraine and refused to run laps (an agreement my Grade 8 teacher and I had since she trusted me), we didn't have our regular teacher that day but the teacher from the other section, a notorious hard-ass (who later on was actually sweet). She tried to get me to run laps and I refused because of my head and was flipping through a book just to distract myself from the pain (no medication) the teacher saw me and yelled for me to stand at the wall. Saying that if i could read then I could run, I could either run or stand at the wall. I told her that I wasn't going to run and I tried to explain my head problems, she cut me off and loudly yelled; "To the wall" 
So I bit my tongue and walked to the wall. Stood there in lots of pain as it was very bright (I had been hiding from the lights in a dark corner with the book, as my regular teacher let me) the sub saw me and yelled again for me to go to the wall outside. Now I was a very good student, polite and never talked back; so I felt like her treatment of me was very unfair and I reacted. When told to go outside I yelled as loud as I could "Fine!" and stormed out. 
I remember my friends trying to go after me but them being held back. I was going to be sent to detention for literally being in pain.  I sat down outside the gym and just cried. I could have walked away or gone to the nurse but by this point I couldn't see because of the pain. I sat there for awhile and just rocked to distract myself. Have you ever been in so much pain that the only thing you can do is rock back and forth and wish you were dead? Well it sucks. So there I am rocking and crying when the supervisor comes to collect the attendance and sees me. Since I was a good student I also had a good relationship with the supervisors. When she saw me she stopped doing her job and came to sit beside me. I didn't notice until she tapped my shoulder and I looked up and squinted to see her. She knew about my head issues and went to find my regular teacher right away. Within seconds she was there beside me and I was choking out my story. The emotional issues and crying had made the pain worse, and by this point I had been without any medication and blinding pain for nearly thirty minutes. The teacher went and told the other teacher about my situation and I remember the sub apologizing and saying that I next time I should bring in a note (Like yeah okay Karen* I will ask for a note hours before I have a migraine cause I can see the future). 

Okay so that was a weird side-track but I wanted you to know just how long this has been going on and how bad it was and is. That was back in Grade 8 when I was about 12-13, I am now 22. So it's been about ten years since that event and I still have problems.

My migraines sort of eased up but I got new issues, stabbing nerve pain in my scalp as well as my face. At the age of Sixteen I was diagnosed with trigeminal neuralgia (although we now think that was a misdiagnosis) which is an old person condition. Basically I get intense sort of zaps of pain that can be so bad that I can't function. They don't last for very long but they really hurt. Sort of like getting electrocuted. Around the same time that I get that diagnosis I also start having an extreme tremor in my right hand, when it started I couldn't control it at all. It was like my hand was just tapping and no matter what I did I couldn't get it to stop. I went and had many tests, but they all came back negative so they said that it was just stress. Which part of it might have been because after a year or so it stopped nearly completely. I still have random bouts of it where my hand will spasm and I drop whatever I am holding, or writing with a pen becomes a struggle. It also constantly shakes ever so slightly no matter what. So like not really a normal thing. 

I went off to CEGEP and things were pretty good there, apart from the migraines that were getting bad again. I did develop something new while at CEGEP (yay!); I could not eat in the morning without feeling sick for hours. I would wake up with the intense need to puke and this made me late for some morning classes as I had to wait for it to pass before I could get ready. I still have this now but I have learned to work around it and just deal. That said I now never leave the house without Gravol just incase. I had started taking pain medications pretty regularly in the later end of high school, just Advil and Tylenol and the occasional Aleve if I needed a bit of a boost. 

Between 2016 when I left CEGEP and now things have gotten worse. Things are going wrong quickly and I haven't really told anyone how bad things have gotten because I am so afraid that something is seriously wrong. It's like, if I admit that things are bad and scary then it makes it real. Right now it's just "in my head" because everyone thinks I am fine. The truth is my eyesight is getting worse and I need new lenses about every six months or so. I have started to see double even with my glasses on, mostly with anything bright and road signs at night. I have also noticed that thinking is harder and that I can't read nearly as fast or as much as I used to. It's had to keep everything in my head and that has never been an issue for me. I was the kid who read more books in a month (about 2-3 a week) than most people read in a year, and I kept reading for years but recently I can't seem to read anything longer than a poem and even then sometimes I need to read it twice.  This is also the reason why my updates have been super slow and messy on here. I can't write very well either, and I find it takes more and more effort to get the words out the way that I want them. Even writing this is difficult so apologies if nothing makes sense. 
I am also getting these things that I call "Episodes". I have a worsening spasm that happens in my bottom and top lips, mostly on the right hand side. It used to happen once or twice a year and I just thought it was coffee. Now it happens nearly every day and I don't drink caffeine nearly as much as before. The lip twitching isn't all that happens in an "Episode", no no, if only it were that simple.  Episodes are really scary for me because they happen out of the blue. I will be fine and then I start feeling a bit angry (which is a warning sign of my migraines) that will then quickly turn to lethargy, and then the lip hits with it's painful twitching, next is my eyes (it makes me feel like I have to blink them a shit ton), then the twitching becomes more like cramps and my lip sticks out a bit while it just goes nuts, then the migraine starts to set in and I can feel the world start to look funny. It doesn't just look funny it feels funny, some textures become too much for me, it feels like time slows down and I get a really bad feeling of " Jamais Vu" like deja vu (I can't get the accents on my keyboard, sue me) but instead of being like "hey I have seen this before" I am overcome with an intense feeling of otherness. Things that I have seen for most of my life look totally strange and while I know logically that I have seen them before I can't shake the feeling that it's all new. I was actually driving home one night and on a road that I had traveled every day for over five years, and I had jamais vu, I had no idea where I was. I knew I was on the road that lead to my house but I couldn't tell you which part of it. I began to freak out thinking that I was lost. I just kept driving and knew that it would pass. It took me nearly the rest of the twenty minute drive to calm down and start to re-recognize where I was. 
I do get all these parts of an "Episode" separately as well. (I am actually about to have one right now but I am going to keep writing so you can see what happens) 
A true Episode is a bit different. There is the lip twitching and cramps, the eye blinking and twitching as well as the dilated pupils, my head starts to feel funny liek someone is using my brain as play-doh, then I get the waves of confusion and I have a hard time to think. Then, um, I get the waves of tiredness and anger. Next is Jamais Vu. Then we get into what makes the Episodes different. I start to shake, like all over. I can still see and hear and think but I am just twitching all over and I can't tell if I am just moving in that way to try and deal with it all or if it is like in the part of my brain that doesn't do the out-loud thinking. I also have this need to hit my head against something, not hard just the tapping and pressure seems to help. When the pain is really bad I end up pulling on my hair just so I can focus on a different type of pain, instead of the toally consuming pain in my brain. 

So I am sick. After reading that you are probably like "Duh! go see a doctor." I have. I had an episode at work back in January and needed to leave to go to the hospital. I freaked out the staff because they thought I was having a stroke. I was given a literal handful of pain pills, muscle relaxants and vitamins, as well as an IV line for fluids. After all the pills and the fluids I had started to come back around but was still in pain just manageable pain. After that I saw my GP and we have been trying to get tests done however the hospital in the area keeps making mistakes. It is now April and I still have no idea what is wrong with me and I still have not done my full CT scan (I had a normal one but I need one with contrast that the hospital has been refusing to do for whatever stupid reason they come up with, since it has literally been a different reason for every time I have gone in for it. Tomorrow I am going to go back to my doctor's office and let them know what is happening and book an appointment with him to go over the scans that I do have. 
I have a plan I am just sick, and no one knows what it is. I never thought that I would be sick, like yeah the flu and stuff but nothing like this. This type of sick is for older people and kids on television, not for a 22 year old girl. My episodes have stopped me from doing lots of things. They have made it difficult to complete my work while I am in the office as I can't think straight. I now have to keep naproxen tablets on me at all times and I have to take twice the recommended does in order for them to take away just a little bit of the pain. I cut down on caffeine and am working on cutting it out totally (but I love black coffee and tea is wonderful). I have a hard time recalling simple things. Drinking is hard without a straw since I end up dribbling on myself if I am not careful. It is difficult to go outside if the sun is out because it triggers migraines. Loud places are horrible, but I do still go to concerts (I just take four naproxen tablets before the show starts and hope for the best). I don't stand in the shower anymore because sometimes the heat and the rushing water make me faint. I want to go to the gym but sometimes running will cause an episode. I have to eat very regularly or else I get an episode.  It is slowly taking over my life and I don't even know what it is. I am just sick and things are getting worse faster and faster. 
Honestly I think that it is some sort of tumour inside my brain or near my thyroid, either way not good. So in order to help me process this I have begun making some plans for when I eventually get very sick. I had planned to get a second job but I am quitting it tomorrow so that I can focus on my health (the extra day I did last week triggered an episode since my routine was changed suddenly). I have also decided that if it is a brain tumour or something else horrible, I will ask my friends to each either pick out or design a small - medium tattoo for me to get before any treatments that might kill me. If I am going to be sick I want to be able to look down and see that I have a constant reminder of those who I love and who love me. That way even on my worst days I can take comfort in knowing that it isn't all bad. 
I don't have any tattoos right now and I don't have any plans to get any, except for those ones. 

Anyways this rant was long and weird but I needed to get this off my chest and finally admit that I am sick. Now to just hope that there is a cure and that I can lead a semi-normal life, cause let's face it; normal is overrated. 

Peace,
M.Alice