Where did it all begin for you? I’ve had what I thought were bad headaches all my life on occasion but they didn’t become too bad until 2004 when I turned 14. That’s when I began to seriously see a neurologist and begin on the journey of taking a slew of medication sometimes for a whole year before knowing if it might work for my migraines. Medications like Topamax gave me real side effect issues and made highschool significantly harder for me and my brain was so clouded I was afraid to audition for plays for fear of my migraine attacks. In fact I became a very shy person which had been unlike me and I really didn’t have many friends in fact I lost my best friend from second grade due to this chronic illness. He never understood invisible illness and I tried reaching out to him all the way up until last year. I even told him and my other former best friend about my illness going terminal and was promised a visit by both but it has been well over a year now and I’ve seen neither though one lives directly across the street from me.
Well my migraines have essentially been all of my life and we thought I might grow out of it, I still hope every single day I’ll wake up to a clear head eventually but up to this very day it’s pain and agony every single day, and every hour of them. My doctors are very curious about my health because I appear to have had a cluster headache at 19 months or so old which I wrote about here. I was screaming and curled up in a ball pulling my hair out literally in handfuls. My neurology specialist don’t understand how I’d had one so young especially since none of my family suffer them and I didn’t have them often so at the time of course nobody knew what had happened. It seems my recent health developments only reveal more and more struggle throughout my life.
In fact with all the health problems I’ve had I’m grateful not to be dead, deaf, or on a ventilator. I seem to have 9 lives and am quite lucky with knowing when something is wrong even if it might be subtle. I caught my vasculitis getting bad early enough for it not to shut down my lungs and kill me just less than a year ago now. My journey has led me from local doctors to the NIH, Weill Cornell, then to Mount Sinai & Lennox Hill in NYC, and finally now to Johns Hopkins specialty Vasculitis and Neurology units. My appointment date is October 25th and I am not sure how long I will be there. Luckily with all the connections my doctors have I always see the heads of the departments especially since my case is so complicated and at times I need what would otherwise be impossibly quick admissions and treatment. We will now be seeing Dr. Philip Seo which I’ve been told is an excellent doctor with great bedside manner so I am excited to meet him. I will als be seeing a doctor Hook about my neuromuscular issues which is a funny name but I hear he too is a fantastic doctor and wants to see why my diseases are progressing the way they are because I shouldn’t be so disabled so rapidly, we all think there may be more underlying issues.
I mean we always hope not to have more health issues but it would in fact be great to have one thing…just one that can be cured or brought into remission. It seems as though everything I get is incurable and not responding to treatment natural or brand new medications both generic and brand name. I feel as though we’re at the end of our rope and I really am not prepared for what will happen to me mentally if Johns Hopkins cannot help with my vasculitis. I’d essentially then just have 14 years to try and survive not really live life and that’s certainly not something I desire. Anyways I suppose to answer my introduction I’ve been chronically ill since birth. My migraines are genetic and both sides of the family suffers that as well as high blood pressure. I didn’t mention this earlier but from birth to 1 or 2 years of age I couldn’t even digest proteins so my parents had to spend a small fortune on specialty baby formula just so I’d live to be older and be in the ENT’s office every day( ear nose and throat doctor) for my hearing issues which would last from infancy up until age 11 which would be my last surgery *knock on wood*. I guess I’ve always been a victim of chronic illness and perhaps that’s why I continue to conquer it every single day of my life. I’ve even taken it and am turning it into a business. I already get paid to write about it and that’s a real accomplishment. I mean how many people who’ve been sick since birth, have many incurable/chronic illnesses, and that can barely move properly? I can think of a few people who’ve been great and dealt with chronic illness and if I can do anything about it I intend to be one of them. Anyways I hope you’ve all enjoyed reading this is nearly my 500th new article so I’ll have to think of special thank you for that, thank you for reading and I hope you’re all having pain free days!