Half a Life
That is all I’ve been allowed…half a life. Thanks to not only Migraine, but Fibromyalgia and Osteoarthritis as well. Lucky lady, aren’t I? Sadly, I wish I could report that I have found the miracle cure for myself. I have not. I am no closer to being well than I was 17 years ago. That’s how long I’ve been fighting this battle. At least I had my parents to support me and help me understand what I was going through when I first began my own personal Odyssey. Unfortunately for me, the last 7 years I have fought alone. But like Leonard Cohen sang, I’m still waiting…waiting for the miracle to come.
I had my first migraine at age 10. I remember it like it was yesterday, as has, I’m sure, each and every person who has ever experienced the sheer invisible hell that is a Migraine headache. Even at that young age, I could actually see individual blood vessels pulsating in my line of vision, and it terrified me. I knew something was amiss when the pressure built up in the back of my head until it felt like my eyes were being pierced by an army of red hot knitting needles. The smell of dinner on the stove was the icing on this cake. By the time I told my mother, I threw up in the bathroom, then immediately went to find out what was happening to me. My mother and father both suffered from Migraine headaches, so she always knew what to do. So she laid me down in her bed and said “Take this and try to sleep, baby…whatever you do, stop crying, it will only make it worse.” I have no idea what she gave me that night, besides a huge helping of such sage advice…if I had only known then how right she was. Crying makes everything a thousand times worse for me, so I don’t even get that release, when all I want to do is saw off half my body to make the pain stop. Let me share with you just a taste of what I’ve gone through.
By age 17, most of my health issues were reproductively-related. I consistently missed a week of school a month, when good ol’ Aunt Flo decided to visit, her good sister Migraine would come bursting the happy little bubble that was my life. Hand in hand, the Happy Sisters decided to make my day to day existence a living hell. But usually, after my dues had been paid for the month, the ladies would leave me alone. This was pretty normal until March of 1994. I was in my senior year of high school, proud of the fact that I already had two scholarships under my belt for the state university I had been accepted to. I was going to be the first person in my family to go to college and I didn’t take that lightly. Perhaps I had too much pride and that is why I was struck with the indescribable torture that is the Epstien-Barr Virus. I missed a month of school due to golf-ball sized lymph nodes, the fact that I couldn’t swallow or eat compounded the fact that I could not move my body anymore. I was somewhat used to being immobilized by the migraines, but this was an entirely different beast. And when all was said and done, I never quite healed from it. My doctors have all said they thought my Epstien-Barr is what caused my fibromyalgia to rear it’s ugly head, being that it’s sometimes brought on by a massive trauma or shock to the body. And that virus did it to me.
The pain and tissue damage was lasting, and I have a lymph node that to this day causes the worst of my pain and is a direct cause of at least half of my migraines. (Think it should be taken out? Me too. :/ )
I have always been a “good girl”. I never partied, and if I did, I went home right away! I played my flute for 6 hours every night, then I’d do my homework and read. But the specialists and doctors I’ve seen in my time don’t know that. All they saw was a young girl who said she was hurting. I’ve been heartbroken to have doctors ask me to open my mouth and the second they see the extensive damage I have sustained due to the medication and vomiting over the years, this is what falls out of their ill-educated mouths: “So when was the last time you smoked meth?” To which I replied, aghast that I would be accused of such a crime, “I’ve NEVER in my LIFE seen the stuff! I wouldn’t know if you had a bucket-full of it in front of me!” Then state the obvious reasons: my insurance never covered dental care in my state until 2009. I wasn’t able to find a dentist until the day before Thanksgiving of 2011. I had eight shattered teeth removed and am only just now completely healed from the surgery. I have one surgery to go: wisdom teeth, both bottom ones need to be removed as soon as possible. Needless to say, I needed help for a long time before I started getting any.
Getting my teeth attended to has helped ease my daily headache pain, and I am very grateful to have found a surgeon and a dentist who are less than an hour away. Because I live in such a rural area, and have for quite some time, I’ve outlasted two doctors now, who have had no idea what to do with me except pawn me off on specialists all over the state. They don’t take into consideration that I am completely disabled by these diseases, and that living on federal assistance is not enough to pay for the insane amount of gas money it takes to drive 4 hours away. OH yeah, guess I should mention, I turned in my driver’s license in November because I can’t even drive anymore. The flashes in my eyes from passing headlights will give me an immediate migraine. Lights are Holly’s bane, it seems. I actually call my apartment “The Cave” because the lighting is so ambient, people mistake me for a brown recluse. Shelob, my soul sister.
I spend most of my time trying to have a normal life, but quite frankly, it never works out for me for more than 6 hours, and that is IF I have my medication. I recently went through another horrifying experience, being that my pharmacist went crazy on me, in front of patients and co-workers alike, saying that I belonged in rehab, that I need to stop taking EVERYTHING I take (note: this is the worst advice ever, given that it could potentially kill me), and that he would know, he was a recovering addict whose underhanded scruples lost him two business. How this man could EVEN compare himself to me boggles my mind to this day. At that time, I was weeping, my heart shattered in front of people I had trusted for years. I tried defending myself, but every time I opened my mouth he would shut me up by giving me his speech again, telling me I wasn’t a bad person, I was just mentally ill. So this leaves me in a particularly uncomfortable situation, once again: People think it’s all in my head, they made their minds up about my condition long ago, and they sit on their opinions of what I should do until they think they have the upper hand in the situation. Small town life. Gotta love it. So now I am increasingly uncomfortable even going to get my medication that saves my life on a weekly basis, because even the people who are pretending to help me are secretly harboring personal demons that they choose to manifest when they see me. It’s not fair to me. Preconceived notions aren’t worth a dime to me, especially when these people know NOTHING of my day to day life. Judging by their accusations, I know I don’t want them in my life anymore. I was abused in a relationship once…I will never let it happen again, even if it’s a business or healthcare relationship. I know myself better than anyone, and that includes my illnesses. If only people would LISTEN…
All I’ve ever wanted is help. For 17 years, all I have begged for is HELP. And all I can do now is wait until that help comes. Luckily I have a man who loves me very much, and I do have something to live for besides the miracle cure. I WANT to be able to live pain free, naturally. But at this point in my life, I can’t do that yet. After surgery maybe. I have hope. But that is all I have. That and a post-surgery, love-filled lifetime ahead of me that will be a whole lot brighter than the last 17 years have been. Maybe by the time I die, I’ll be able say I’ve actually lived. Right now, though, I can’t say that…I’m only just beginning to learn what it is to live. Laying in bed for half your life isn’t fair. But it’s the hand I’ve been dealt. So I’ll keep waiting. It’s all I can do. Until then I’ll wait patiently and do what I’m told. I have done this my entire life. Maybe one day it will finally pay off in joy and contentment rather than heartbreak and pain.