Let me preface this by saying, I truly struggle with asking for help. I have lived my entire life trying to do right by karma, kindness, compassion, humanity, and faithful strength, even with the tremendous hurdles that have been thrown into my path. So for me to come to a place of having to change my position to be on the receiving end is truly a challenge for me. Nonetheless, I have come to the point where I do need to ask for help in order to try and change the course of my life.
Almost 12 years ago I was in a car accident that forever changed who I am and who I would become. I was stopped on a two-lane highway waiting to make a left-hand turn when the vehicle that had been 1/4 to 1/2 mile behind me accelerated into my car at 70 MPH. From that “split second” moment, at 23 years old, my life’s path was no longer that of my choosing and became one that would be dictated by doctors, surgeons, chronic pain, constant limbo, and everlasting unknowns and unanswered questions.
I changed as a friend, as a daughter, as a partner, as a worker, as a human being. I live every day with massive pain. I have been through multiple surgeries and procedures with minor relief. I spend about 2/3 out of every month in “migraine/ headache” pains which are so debilitating, I call them my “shotgun headaches” for obvious reasons. I have been to Mayo Clinic to one of the supposed “best neurologists in the country” only to be sent away after a short appointment being told “there is nothing they can do, but offer me to enroll in their program that will show me how to function and live life”. This would not be a worthwhile option for me because I still continue to strive so hard every single day of my life to function and appear as normal as possible.
My back pain is constantly activated and the damage done is increasing more and more. I have tried everything under the moon for resolutions to both uncontrolled challenges. The first 8 years after the accident were mostly focused on my back and how when my back flares to its max, it immediately triggers one of the headaches. I endure them from 48 hours to 3 weeks, triggered by something , like my back flaring up, or nothing at all.
Throughout this whole journey over the last 11+ years I have seen countless physicians and specialists. I have had to do all my own research through PubMed (when I can get access) trying to see if there is anything new or helpful that might be out there or around the corner for me to look into for my headaches. So many of the specialists I have gone to, every questionnaire I have spent countless hours filling out, I have left with resonating feelings of being simply dismissed because: a) I do not lay in bed as a drug addict, and I have fought hard to learn to walk again, to talk articulately again, to not be on any drugs (that never helped in the first place); b) I have CHOSEN to attempt to appear “normal” and continue to function as a human as close to the human being I was born as; and c) I do not fall into the typical class of “migraines” therefore I get dismissed for not being understood.
Though I am in constant headache pain, some days more tolerable than others, I still wake up every morning and take that initial step to get out of bed, even though I am currently living in a life of only about 15/100 days being functional (including days of recovering). As the years have gone by and the lack of resolution for these headaches still remains, I am confined more and more to reclusion of pain where fetal position is my only minor comfort. I do not get to venture out much and when I do, even in pain, I try hard to put on my “mask of normalcy”.
I have been fighting a battle with Disability for almost 3 years now. In basic terms, I am not qualified for disability because of my age. I am not qualified because 11 years ago I CHOSE to be someone who LIVES and I chose NOT to be a victim, to “appear normal”, and to try to continue pursuing different careers to accommodate my challenges; I am not qualified for disability and am according to them “capable of any job”. My response to them: “If you can show me a list of jobs that pay full time, allow you to take 15-24 days off a month at random times due to debilitating headaches that make you want to put a shotgun to your head for some relief, don’t require any sort of long sitting-standing-manual labor-computer work- for a chronically painful back and neck, then I welcome the offer to submit my resume”.
The stress of all of this on a daily basis on top of financial stresses and how to maintain a life of weekly medical treatments, prescriptions, in a world where cost of living is astronomical and the rate of pay to live is minimal, has me continually struggling much further than I need to on top of the stress of constant pain with fluctuating levels of debilitation. Even so, I have worked extremely hard to be a person who attempts to wake up each day anew. To not think about the pains I had the day before and to start each day fresh, even if I am still in continual pain from the previous day. I wake up in pain, but I do not let it stop me. And though, my pain is my demon that tries to break me everyday, I CHOOSE to live. I CHOOSE to keep trying to do things.
I did choose the hard road. I chose to stand up and be my own advocate. I chose to never stop fighting to find relief each and every day so my daughter can have a mama who is always able to be by her side come play, sleep, or exploration. I live vicariously through her and her purity. I choose to keep living and loving as passionately as my body, heart, and soul will allow. I choose to be the example for my family, for my daughter, that proves no matter what, you always have a choice and in the end, it is how we chose to use that choice that defines us.
With that said, I now find myself at 35 years old - after almost 12 years of limbo, having had to fight daily to hang onto hope that medically someday, somewhere, somehow, someone might take the time and courage to help me - having finally found that H-O-P-E.
Let me introduce you to my headaches: Headaches, meet the world. World, meet my headaches.
They have been tracked for years trying to find any consistency in what, when, where, how, and why they occur. There is absolutely no rhyme or reason. There is an extensive list of obvious activities I do have to avoid to not trigger them further and that list is growing larger and larger as they become more and more prominent.
When my shotgun headache is triggered, it starts in the back of my skull. ALWAYS right sided. Wraps around over the skull, behind the ear, into the jaw, and continues to wrap over top of my head to my right eye. My right eye lid will close down about halfway involuntarily. The pain is sharp, explosive, pounding. It is like an icepick behind my eye. It feels as if someone is holding a bow and arrow directly up to the base of my brain stem and skull with it fully loaded, and keeps releasing it over and over as it gets stuck in my skull. My brain pulses in a way that makes me wish it would just explode out of my skull to alleviate itself. My neck and face become extremely hot to the touch. The nausea is beyond control that I end up throwing up &/or dry heaving. I end up having to lay in a dark room with little sound. I hook up a Cefaly unit to my forehead and wear it for as long as I need to, usually maxing out the electricity so much that I end up bruising the tissue on my forehead as well as running the electrode pad dead after only one use (they are supposed to last for 20 uses). I will wrap a Physical Therapy Grade Wet Heat Pad around the back of my neck and will burn my neck so intensely that I cause burns on my neck. I will lay on an acupuncture mat that has thousands of spikes on my back and neck. Once I remove the electrodes and heat pad, I lay still in a fetal position with ice packs on my forehead, over my eyes, and on the back my neck. I will take Zofran for nausea that sometimes helps. I end up laying and not moving anywhere from 48 hours to 3 weeks. When they last longer than 48 hours with increasing intensity, I end up giving in a taking a Dilaudid just to tame the pain enough to attempt to sleep. I cannot sleep when in these headaches. I will also try slamming caffeine and at times pushing so much I end up feeling like my heart is about to explode. As of the last year where I was averaging 15/100 days being functional, I also had a major change and hit to my vision. On top of having my hand tremors worsen from mild to very embarrassingly noticeable. The only way to get out of the headaches is truly waiting them out - These. Are. My. Headaches.
The treatment is offered to me by an extraordinarily kind and beautiful soul who happens to be a world expert in this procedure. He was very touched by my story and wants to do anything in his power to be “that man that helps me have a better quality of life again”.
His treatment is a Peripheral Nerve Stimulator. I qualify for this treatment according to his very conservative standards to the “T”. It would entail a trial period where I would have three electrode pads with 8 points of contact laid over my Greater Occipital Nerve (back of skull), my Lesser Occipital Nerve (back of skull), and my Trigeminal Nerves (forehead). They are then sewn in and attached to an external battery pack that controls the levels of electricity administered to each nerve. They spend 7-9 days programming and making sure the patient is handling the device okay and the programming is set properly. Because of the extensivity of my headaches, I would then fly home for 3 weeks and continue testing it on my headaches. After having the trial implanted for 4 weeks, I would return to the doctor to have the trial electrodes removed. At this point (patient care) he wants the patient to return home for 2-3 weeks to let the body rest and recover without any foreign objects to stress it further. After this time period is up, I would return for the permanent implant. The permanent implant consists of permanent electrodes being placed on the nerves and the battery pack being inserted and sewn into my chest under my clavicle for permanent placement. I would be spending another 7-9 days there for proper programming and being monitored while healing. I am guessing there will be a follow-up visit at some point, but have not discussed this yet, because of simply trying to focus on one step at a time.
THE NEED FOR FUNDS:
Insurance will not cover this. They have denied me. I have had the doctor and the hospital give me rough estimates for the Trial Procedure and the Permanent Procedure. I have estimated costs for flights, hotels, car rentals, etc for the multiple visits. This is the lowest possible number I could come up with to work towards.
HONEST HOPE & KINDNESS:
In my eyes this seems like a lot of money to ask others for. I have always stood by that I didn’t want anyone else to help me financially with any of this because it is the burden that was bestowed upon my journey and shouldn’t be dumped on anyone else. My pain is my norm. I do the best I can and have tried my best to fight it, survive it, and explore any avenue of hope. I am at a place however, that I have hope within my vision, but because of finances, I do not have it within my reach. I have missed out on a lot of life and adventures from the journey that was chosen for me, and I am at peace with that. But it will never stop me from fighting for hope of a better journey ahead. So in a very raw, humble, and very heart wrenching way, I ask for your help in any little way you might feel could help. I am without words for gratitude that you have at least taken the time to read my story. And I know we each have our own battles and roads to follow, so if you are not in a position to help, I hope I have at least inspired you to spread a little more love, compassion and kindness to the world. It is something that we can all use, no matter your story. Thank you kindly!
Be kind. Be compassionate. Be honest and real. Take a deep breath and be and live this life.