Life is tough, I heard that so often and I thought I’d been in tough situations when I was young. Honestly though even though I talked funny until 1st grade and had severe hearing issues up until I was 11 years old I had no idea what a true struggle was. I look back on my childhood treasuring those years when I’d never had all these drugs in my system, when I was truly living, and when a workout made me sore was the most pain I would feel each day.
Today my friends I write rarely and feel it truly is my duty to reveal to you that I shall be focusing on my books and startup for a short while. You will see blogs from me on occasion but they will likely be about migraines and clusters along with the related events. I must say that the Vasculitis is getting to me, there was a day quite recently where….it hurts me to say this publicly, lets just say I wasn’t doing so well. My little brother who’s 6’ 7” and picks me up out of bed nowadays because I am too weak asked my mother what we should do, she explained to him my wishes never to live on machines and that we wouldn’t be calling the police to resuscitate me or do CPR. I was told he asked why not can’t we do anything? It was then that she told him there is nothing to cure me.
The whole house seems somber like a nursing home with my parents and little brother taking turns taking care of me. At age 24 I never guessed I’d have 6 jobs or titles whatever you want to call it, lets just say my resume is quite active with plenty of non-profit work as well as displaying my entrepreneurial spirit. Some people now look up to me and some have literally contacted me calling me a mentor or idol…I don’t want that, I appreciate the complement, but I’m just a sick man like any of you probably are.
If you send me that you aren’t getting the messages in my poetry or most of my blog posts, be a leader, create jobs, don’t be ashamed to have migraines or cluster headaches or any invisible illness. Make it your own company’s human resources policy to allow breaks to anyone in crippling pain no matter what is causing it. Allow them to take the time off and make it up when they can because it’s how this person was born or the hand they were dealt in life they cannot be looked down upon or a chronic illness. If your reason for not acting is because you don’t own the company then I am astounded at your laziness in not writing to your local politician’s about making laws to back this up or your President of HR or COO to change these policies. We need to make this standard human resources policy by showing that the chronically ill can create job!
I’m sorry for going on a rant my first post back and I promise to get on writing about research again and doing self help articles and posting reviews again. However I had to make this post because going to Washington D.C. to advocate for you all was not an easy task at all. I will write a post explaining my time in D.C. later but for now I just want you all to know this: “I am alive but my life is hanging like a thread, my bones are brittle from all the prednisone, I’m losing use of my arms but fighting like a Roman gladiator against a pack of lions to keep the use of them. After my physical therapy days I sleep sometimes from 3PM to 5PM the very next day sometimes later. It’s quite torturous but I won’t let any of these 20+ diagnoses (I stopped counting at 20 it was making me depressed) beat me. It’s a mental battle every day now not to be filled with hatred and envy for the lives of others and it takes all of my strength not to post a huge rant on social media when I see someone complain that it’s raining or that they don’t have the newest iPhone etc.
I am trying to keep my spirits up when posting but it’s hard nowadays, I’ve looked death in the face 8 or 9 times now but this recent pass was my closest run in. I don’t feel so good tonight that’s why I am even up typing this long horrid post. I honestly don’t think my posts about my health are of value to anyone, my extended family certainly doesn’t care in fact they avoid me it seems. I am a mad, angry, broken hermit who writes poetry and lectures on everything to the few people who enter my home nowadays. It’s quite sad I found that the majority of my friends are fake or don’t know what to say so they do just that and it makes you feel alone, when all you want is to be treated like a human being!
I feel like an animal now if someone is mad at me or I’m angry and want to walk away I can’t. I need to ask for help to get in my wheelchair and then someone will roll me away but they won’t even let me sit at my desk and work anymore. They either say I get too obsessed and start getting nasty with people, or they say it’s for health reasons. So I get an amazing choice every day: Watch TV repeats and stupid videos or sit in bed all day sweating, in pain watching Shark Tank over and over to enhance my quick pitch and negotiation skills. I am no business mogul yet but I do own my own company and with a fancy website and hopefully some surprises to help us grow. Despite my illness I find my business and books are key to leaving my mark on American soil so I will continue working on poetry, the story of my life, several political books, and expanding my business into new revenue streams once it takes off or if I lose my taste for networking I could always sell it and make a tidy profit enough to settle down, and begin building what I envision for my future.
I’ve ranted long enough but that’s what’s been happening lately and what my focus is, this blog will stay independent for now though I may have it moved over so I can put ad’s on some articles, something to pay some of my web hosting fees and such. I know that may seem annoying to you but I will put the work in to make proper categories and tags the articles more precisely. So for revising and editing over 600 articles I am going to probably add some advertising at some point, but only from companies related to migraines. I guess that’s all I have to say for now I am working hard to make life better for others, I got both New York Senators Schumer and Gillibrand to sign onto a letter by Senator Coons to the VA to help our Veterans with TBI, Concussions, and Headache Disorders that research will benefit the public too! Thank you all for your time and I guess you enjoy relating to me somehow, anyway I’m glad you read this jumbled mess of words I call my blog.