Hello Fellow Fibro Survivor Friends. ❤
I wanted to make a formal introduction, my name name is Haullie Volker. I was asked if I wanted to be an author for the Fighter Zine by Jenn, and am so honored and grateful to now be a part of the team as it’s something I also expressed my interest in participating in so I’m so excited. Thank you so much to everyone who inspired me to start my journey and to the rest of the Fighter Zine Authors and to those over at the Fibro Fighterz FB page. I am a Fibromyalgia survivor going on 14 years now. Ironically my maiden name is Free, but that’s not exactly a representation of how I feel these days. It took doctors 13 years, countless tests and a variation of symptoms that’s probably longer than a little girl’s Christmas list to diagnose me with fibro and some may argue that having a name to attach to what you’re going through isn’t such a big deal, but I bet to differ. I think it means everything that I can finally say I have fibromyalgia. This is what it is, these are my symptoms yada yada. Unless you really HAVE the disease you can’t understand the confusion that comes with having no name for why you are in so much pain. If someone asks you what’s wrong with you the last thing you want to say and the last thing they want to hear is “I don’t know, doctors can’t find a thing wrong with me.” It almost feels like you can’t get your point across to anyone and they’ll never understand your point because it needs to be a contained diagnoses, the symptoms are so vast people tend to get lost in the overall story or picture when you explain what you are going through so having a name is like narrowing down a very difficult medical equation if you will.
It all began 14 years ago for me, I was a young 18 year old girl with the world ahead of me. I had so many dreams to peruse my creativity and share my artistic ways with the world whether musically or otherwise so I had a lot I planned out for my life when I decided to get out of the mess of living in a home that was filled with trauma and abuse. It started off as just a few headaches, at the time I was told by my guardian at the time that I was “too young to have headaches, kids don’t get those.” Then I moved from Washington State to GA with my boyfriend stationed in the military at the time and thought I married him, then the paperwork ended up being messed up so it turns out we were never married to begin with because we didn’t take our actual vows, we just signed paper work; which was fine with me because I think at that age I made a mistake. I moved to GA and my ex just didn’t care about finding me the right kind of help I needed so I suffered with these chronic headaches that never went away, he began to drink too much and too fast and sometimes would get mildly violent with me or verbally rude. He punched a lot of holes in the walls when we argued, kicked me in my back when we were in bed knocking the wind out of me, punched me in the arm a couple times, he even chocked me for about 5 seconds while we were having an argument. We were sitting on the couch fighting over probably something stupid and he reached out and choked me. I did everything I could to just argue back and cry or not let it get to me but it always did. I’d call my Mom a lot and lie. Say he was the perfect man. Meanwhile he made us live in a roach infested brick duplex that was so infested it makes me sick. I begged and begged because no matter how clean you were they were coming and he simply did not care. He would also taunt me while I had my headaches and yell at me screaming, “Waaaahhhh wahhhh! I got a headache wahhh! ahhhh!” and just yell through the locked door while I tried to bathe and he was so loud I’d have to cover my ears. I would just scream back “stop it!” When we ended up leaving each other it was around 2000. The stress of being in that relationship I think is what contributed to my fibromyalgia because when I was with him I would eat bad food or food that may have been contaminated from the infestation. I am in no way a dirty person, I’m very tidy, but he was in the military active duty so we were stationed out in Hinesville, GA which is swamp-like territory so the neighborhoods are just infested and you have to spray to take care of it, if you don’t you’re asking for it. Or if just one of your neighbors are unclean you got a problem on your hands which made it hard. I also took a lot of aspirin to medicate the headaches. The roaches and bugs became traumatic to see all the time or feel crawling on me or see crawling on everything. I also started feeling pins and needles but thought to myself is this normal once you hit a certain age? So we ended up splitting for obvious reasons, I couldn’t stay with a man who was the way that he was who would make me live like that. I mean it wasn’t hell on earth but it was uncomfortable and a woman should be treated with more respect than that so hell no I took off and left his pathetic excuse for a….ok sorry I almost said something really bad lol. Needless to say, no one should live in un-healthy conditions. No matter how clean you spray a counter down, if a roach crawls across the counter, it’s unsanitary again.
I then I ended up finding the love of my life three months later on a train coming back to California where I live now. But fortunately back then it was just headaches, it wasn’t so bad. I was able to manage most of it, because I didn’t know I had fibro, I had no idea that my body was working itself up slowly year by year, gathering up symptoms like a snowball rolling out of control. My boyfriend who eventually ended up becoming my husband was incredibly supportive and a stark contrast to the man who used to be in my life. So I had that on my side and I was incredibly grateful to have found him. He’s provided me with so much love and support and he’s been the one by my side taking me to appointments, calling the ambulance when my back spasms, and kicking down emergency room doors for me when I had cluster headaches and things got too bad to handle. He gets me medication when I’m nauseated and let’s me rest in between his working schedule as a correctional officer to take care of the kid for me. That’s a man!
So fast forward a few years…I got pregnant in 2008 so we’d been together for 8 years before deciding okay it’s time. In 2009 I gave birth but it was a very high risk pregnancy. I had preeclampsia as well as hyperemesis gravidarum so I was fighting sickness like I never felt before during my pregnancy not to mention I was bed ridden most of the time and immobile a lot of the time. After I gave birth the symptoms got significantly worse for me. Fibro kicked in like a fire storm inside of my body. Burning bones, weakness, stiffness in my joints, hard to get up, hard to sleep, sweating, digestive issues, IBS, headaches, migraines, pins, needles, twitches, electrical shock sensations, sensitivity to light, sound, hot, cold…it was overwhelming to say the least. Why were all of these things all of a sudden hitting me full swing? before I was pregnant I was suffering but not to the extent that my body suffers now. I’ve always been sick, but I’ve been manageably sick. Now I feel disabled. I want to tell you there’s a cure and that there’s a light at the end of the tunnel story for me but there just isn’t.
I took a lot of years focusing on healing my post traumatic stress disorder to heal from my traumatic past. Trying to mend the pieces of my broken childhood together again. Being a survivor of child abuse and then growing up and being a survivor of a bad relationship that turned dark I believe all contributed to how I am today. I don’t think it’s the go-to answer for everything but the stress has made it harder to manage that’s for sure. So while I was trying to fix my soul, I completely avoided my disease for years. Mainly because I didn’t have a name for it. Once I got that name, I was ready. The doors finally opened for me and I stepped through them all. No longer was I going to stand for people thinking, feeling or saying something about my disorder that is not true. I was not lazy, I was sick. Enough was enough because people did start to see me as just weak and lazy and I had to really take a step back and ask myself is that my problem or was it theirs? I am not responsible for that ugliness that comes from someone who cannot show empathy for others in pain. Not all diseases put you in a wheel chair.
Fibromyalgia is REAL. I don’t know if there will ever be a cure for it. But until there is…I guess CURE will just have to stand for something else…Compassion, Understanding, Reassurance and Empathy. Thank you all who read my story and I look forward to publishing articles for the Fighter Zine to help inspire, motivate and bring awareness to fibro. My heart goes out to all of you. You ARE our family! ❤
Love and Support, Haullie (Free) Volker