Today folks I am in no mood to be typing you see writing is a splendid, joyous occasion for me but lately trying to write has been a nightmare. A great example is how I awoke today to a severe 10/10 migraine crying as I awoke, I was already covered in tears so I must’ve been crying in my sleep as well. My right knees and thigh are still in ruins from a mistake at physical therapy leading to a tear in a muscle and to add to it 2 days ago I fell hard due to that right thigh giving out and I landed flat on my face. I am pleased to say I haven’t yet broken anything but with my luck that seems to be next!
I mean how much pain must one endure and how many time can one endure everyone saying they understand completely when they don’t. I cannot describe half of my feelings because there are no words that can truly describe one’s impending demise or doom. Yes today for the 6th time in my life not having eaten in 3 days, and prior to that it was tater tots and the day before 2 slices of a personal pizza and I threw those up. So I have been malnourished for about 5 days and with that my energy has begun to wane and each day I struggle harder to write articles and poetry despite the fact that I’m blocked mentally due to the malnutrition. It’s as if a fog has descended over the area of my brain I usually call upon to write. I can see the outlines of the words yet they’re still too far to make out exactly.
I want to know how many of my readers have ever truly felt like they’re going to die and had good reason to think so. Some people never experience what it’s like to be hanging on by a thread spending your day sobbing trying to find a way out until you realize there are only several thousand people in the entire world with your illness and no cure exists. Once you hear that and you’ve failed to get into clinical trials after conventional treatment failed it’s in your head “game over dude”. That’s how I feel as if I’m expressing some of my last word to you today through this silly blog of mine. I’m sure a hug from all of you would go a long way but we’re connected electronically so it’s difficult to truly make a friend on here expecially when they are chronically ill too.
I often have my migraine and neuropathy only patients ask me whats wrong or say we were worried…well you’re right to be worried. I am far from suicidal in fact I may have been offered my dream internship last night but it’s in NYC and I am handicapped now. I just don’t know if I have the strength to keep moving forward. Yes I’ve felt this bad earlier on in life, when? when I was bodybuilding I felt like this after every 1 hour 45 min workout. I was 202 lbs about 11% body fat and could deadlift a jaw dropping 450 lbs for at least 3 reps. I could pull 500 for 1 rep but they’d yell at me for making the room shake when i put down all that weight. Not my fault the geniuses at my college built the old main gym right over the school Dean’s office. Anyway the point is I only woke up everyday and continued torturing myself like that with a diet I hated because half was fish and I don’t eat fish! Well I did whilst working out and I kept my meals small so as to keep my metabolism high. Therefore I’d see results week to week my body morphing from a skinny kid with no muscle to a musclebound warrior ready for any feat of strength the world might throw at him.
So why is it harder to keep on going now in my time of need? Simply because I no longer see that day to day improvement for all my tedious work. Instead all I see is my health declining over 3 long years and now all my hard work and discipline is gone where there was a budding eight pack there’s now a pot belly of combined water and fat which disgusts me. I get down on myself every time a pair of older clothes won’t fit. I just don’t feel human anymore I feel like I’m some sort of new pet or a monster that must be kept indoors. What other reason could there be to spend 99% of my last 3 years in one place on the couch whether it be typing, sleeping, or surfing the web.
It seems my last resort has fallen as I cannot eat anymore after smoking marijuana. It used to let me get 1 meal down a day but this batch isn’t too potent and so I endure a month of hardship. Why can’t a terminal patient like me just get the medicinal oil? I know the law passed but that won’t matter if I’m dead long before it goes into action. I have several doctors ready to refer me to get a prescription for medical cannabis oil. The only problem is the state legislature who aren’t doctors but political scientists or business people like myself are making medical rulings now how asinine is that? Well it also subdued my migraines and clusters somewhat but they too are back in full force i’m in the O2 right now for one.
Anyways I am desperate for Johns Hopkins to call me I need someone to give me some hope or rip the last bit I have away. I don’t care which of these happens I just need an answer because I’m sick of all this false hope given to me by nearly every rheumatologist I see. Sadly most people with my illness are diagnosed after death, and I feel I’ll never get a 100% clear diagnosis until I die. Maybe then my doctors will write my family some condolence cards saying “Sorry we didn’t think it was that serious”. Anyways back to vomiting, crying, and gradually losing hope. I wish I had a friend in this world to talk to but I don’t anymore at least if I do none of them ever call, write, or text. Well that’s about it my misery summed up in an article for the world to enjoy. I feel like if I were to write about something I enjoy I’d have no followers, therefore I am stuck in a rut writing this crap about my mortality until the day I die.