Fibro Warrior of the Week (#34)
FWOTW: Haullie Free Volker
Location: Bakersfield, CA, USA
Mantra: Real People. Real Pain. Real Awareness. Because we matter no matter what. Every story is unique, and every story deserves to be HEARD!
Haullie Free Volker is our Fibro Warrior of the Week #34. Haullie’s a busy wife, mother, documentary maker, and radio co-host of The Fibro Show. Haullie has overcome harrowing adversity to become a leading Fibro advocate. She also dabbles in telekinesis…
FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Haullie: I was born in Portland, Oregon, but I grew up all over the U.S. I am the wife of a prison officer and a mother of a small boy. I was born in 1980. I enjoy graphic design, advocacy, playing the piano, arts and crafts, playing with my son, and watching television shows that interest me such as stories, science, philosophy. Before Fibro, I used to be active in singing and acting in high school. When I was younger, I used to exercise more and do more outdoor/volunteer community work.
FD: When did you first suspect that something wasn’t right? What happened?
Haullie: I suffer from a lot of post-traumatic stress disorder (P.T.S.D.) from when I was a child through my teen years. I was physically abused as a child by many family members I was raised by at the time as well as mentally and verbally abused. My life was hell and no child should have to live through what I went through with constant torment and mental pain. I could not communicate as well as others. I was not as “smart” as others, as back then I had the “Brain Fog” and did not know what that was so everyone looked at me like I was stupid. I got into trouble for it many times and was abused. I was even sexually abused by a step-father at the age of only eleven and exposed to many sexualized images that I will never forget that really messed me up for life. My mother left him two years later, but I was still being raised by aunts and uncles and other people that did me wrong for many years. Yes there were some good times, but the bad times trumped it all. Almost the day after I ran away from home at the age of eighteen (to leave that terrible situation; I just could not suffer any longer in a family with so much chaos, drug use, verbal and physical abuse along with the memories and torment), I began suffering from terrible headaches. I had headaches before I ran away, but I was always told “children can’t get headaches” by my aunt. I was already being set up for disappointment.
So after I left the pain just got worse and worse and more constant and non-stop. I could not get rid of them, I could only bandage the pain. So head pain was my first symptom and probably because my head was the brunt of many of my beatings as a child. It was the one place I was attacked or hit with hands, fists, and/or objects. I was also made to use chemicals as punishment, so I was exposed to a lot of bleach which probably did some kind of damage early on. “Bleach the walls” was punishment when we got into trouble, but being exposed to chemicals is not healthy for a child for hours on end with hardly any dilution. While I was going through the abuse I was in survival mode, I was too distracted to feel pain or it had not “kicked it”. Believe my P.T.S.D. was my Fibromyalgia trigger to this day..
FD: When were you diagnosed with Fibromyalgia?
Haullie: I was first diagnosed in 2012, but it took me elevan years, countless doctors, and about thirty-five medications for everything to get a diagnoses. That whole saying, “It can take up to three doctor visits to achieve a diagnosis,” is false in my opinion.
FD: When you received your diagnosis, how did it affect you?
Haullie: Honestly, I was relieved to finally have a name for it. But initially, that’s not how it happened. I spoke to to another primary doctor about the fact that maybe I have Fibromyalgia and he laughed about the entire subject before I was diagnosed by a chiropractor. My primary told me, “Oh yea, that Fibromyalgia we don’t really go into that here. It’s usually what we call a catch all for when we can’t find anything wrong with you.” And then he started laughing. I began to chuckle with him, but not because I was really joking, but because I was scared he thought I was a joke and because at the time, I wasn’t being taken seriously. And what do you do when you’re put in an awkward situation and you don’t have the necessary information to back yourself up? You go with what the doctor says. I finally received a true diagnosis by a chiropractor and about a couple of months later, proceeded to do the right thing: research, research, research as much as I could online. I had no idea there were other people out there just like me. People who felt afraid to face Fibromyalgia. People whose doctors made them feel like this was just nothing at all. I almost felt manipulated into believing I wasn’t even worthy of a diagnosis. I was wrong. My chiropractor brought me into the light and showed me that yes, Fibromyalgia is a very real condition and that there are others out there and no, I don’t have to be ashamed; I don’t have to laugh this off and this is not just a catch all. This is real…not just, “let’s see what we can do to combat this.” From that moment on, I found my worth.
FD: Since then, how has your outlook on life changed?
Haullie: I found that my whole perspective on Fibromyalgia has changed. I went from someone who nearly believed everything her doctor told her—even believing the people around me and the crazy people on TV—to someone who began saying, “You know what? Screw this…I don’t deserve to be treated like this and if I believe it then all I’m doing is treating myself the way other people want to treat me and I don’t deserve to be invalidated. I’m not making this up, this pain is not all in my head.” I can’t tell you how many times a doctor has told me, “Well, I think it’s just depression.” But never once have I heard a primary or chronic pain management doctor sit me down and tell me, “Look it may be food triggers or you might wanna try a little light exercise or some de-stressing techniques,” or “Hey I’m looking into some new research.” To be honest, only my chiropractor makes an effort to try.
So my perspective is that not only have I had to become my own savior in a way, I have had to become my own doctor. And I don’t mean in that I diagnosed myself, or that I give myself a script. That’s not what I mean. I mean that I literally had to learn how to go online and do the research that my doctors refused to do and I learned the hard way that the medical industry was a business. Period. And that there are doctors that care, it’s just rare. But that we have to care for ourselves first before we can expect anyone to care for us or take us seriously and it’s okay to come into the doctor’s office prepared. Don’t listen to a doctor who tells you that it’s not okay to do your research. There’s something wrong with that.
FD: How does Fibro affect your day-to-day life?
Haullie: It affects everything. It affects my sleep, my ability to have energy to be a mother, to cook meals, to take a shower, to clean the house, be intimate with my husband; to find motivation to achieve many goals I aimed to achieve in life. I want to get a part time job, but now I have to be picky if I ever want to one day because my back hurts so bad it may have to require sitting down. I can’t eat food without the risk of stomach cramps that are so bad I may keel over and feel like someone is ripping the guts out of me every other day. I can’t tolerate processed foods or sugar very much. My skin gets rashes and blisters, I’m sensitive to the touch. My muscles are achy and stiff especially in the morning. My nerves feel like hot liquid is searing through them at times and if I didn’t have Topamax, I wouldn’t be able to stop twitching and feeling those flares through my nerves. My head and neck pain is so severe it puts me out for days on end. I have occipital nerve pain that cripples me. I have a degenerative lower disk so sometimes I can walk, but sometimes I can’t and I have to walk with a cane. I feel like I am ninety-nine years old in a thirty-three year old body, and I am afraid what my body will feel like when I am really ninety-nine years old, if I even make it that long. I contemplate suicide on a daily basis and have been ridiculed and judged for it. My hands hurt all of the time and are stiff. I can’t even roll over in bed without waking myself up in pain. I have such severe Brain Fog that some days (not all days), I forget what people say and have a hard time concentrating or I’ll do things out of the ordinary and get ridiculed for that as well… like people just don’t get it, so they think I do it on purpose or that I’m just acting stupid. This is only the tip of the iceberg for me.
FD: What can’t you do anymore because of Fibro?
Haullie: I can still do a lot actually, so trying to find things that I cannot do at all is difficult… so I can only tell you that Fibromyalgia has made things more difficult. For example, dancing or skating. I have zero balance like I used to. Reading is difficult because of the Fibro Fog so sometimes reading a book takes me weeks and weeks. I can’t always keep up with characters in books because of their names and remembering names. Cleaning the house and cooking has becomes harder so it has slowed down. I used to make elaborate breakfasts, lunches, and dinners for my husband before Fibro got real bad. Now he’s lucky if I heat up a pizza or make him a sandwich, and I feel terrible for this. So when I can go all out he knows I’m not flaring. I also find just simple things harder: doing my hair, taking a shower, getting dressed, getting my son ready for school, playing with my kid and keeping up, very difficult.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Haullie: Being an advocate for Fibromyalgia. I just never thought that I would be talking about my pain with anyone. Before my diagnosis, I didn’t even know Facebook pages or web pages existed to help people with Fibro. I’ve only been doing this for a year now. It was only one year ago that I went online and searched for my first page and sought help and was inspired to create my own page which I only did so I could maybe find fifteen to thirty people I could intimately talk to … so speaking to people was not expected at all, and finding people to talk to literally saved my life because I really did not want to be here anymore. I was almost finished. Then I did the Voices of Fibromyalgia documentary and I did that only because one day I searched YouTube looking for something, anything depicting a real Fibro survivor and some of their symptoms, emotions, expressions and although I found countless videos, I could not find anything that spoke to me the way I needed it to. So I pulled out my camera and for about two months or so after creating my page, I just filmed little short scenes of what life really is like with Fibromyalgia. Not everything, but some of it. The flares, the emotions, the tears, the triumphs, the expressiveness, etc. And I asked fifty other survivors to join me by writing special Fibro messages on pieces of paper, taking photos of themselves, and holding those signs up.
I put those photos in the video and to this day the video has become sort of a growing movement in the community which I am so honored for because I just did it so I could look back and say okay, this is self-validating for me. I honestly did not know it would help a lot of people or that people would find this video to be something they could use as a tool to help their loved ones understand what life is like with Fibromyalgia. Discovering that really shocked me and that is absolutely wonderful. So I’m very happy I made the decision to do such an amazing project with these survivors as well as the “Voices of Fibromyalgia” Facebook page which I do with my friend Stacy Ihlenfeld, who is also a survivor of Fibromyalgia.
I also never imagined that I would do a radio show called The Fibro Show with Stacy, who co-hosts with me.
It has become one of the number one health-related shows on Blog Talk Radio with over 100,000 listeners! We interview authors, celebrities, survivors with stories to tell; people who run Facebook pages, web sites, and more to help put the word out and make a difference.
FD: : What has been your experience with seeking medical treatment for Fibro?
Haullie: In the beginning, it wasn’t terribly great. They put me on a lot of anti-inflammatories and my body does not do well with those. In fact, I always seem to feel more pain with them. I’ve had MRI’s done, spinal taps done twice, Botox injections for headache pain (didn’t work), massage therapy, a cat scan… I have tried just about every drug you can think of to combat the pain. I’ve been on blood pressure meds and cannot get my blood pressure down; I have gained and lost weight so rapidly it’s ridiculous. I have gone to physical therapy and I have been to real therapy. Then there’s the anti-depressants like Cymbalta. Didn’t work. I tried medications like Lyrica and Savella; almost felt like I had a heart attack, LOL. Eventually, I had to seek out chronic pain management, so now I take a narcotic pain med when the pain is severe (not always) and I also take Topamax for the nerve pain as well as Flexril so I can sleep through the pain at night (which doesn’t always work). Plus, I just learned ways in which I could treat myself at home like eating better. I also use ice packs or heat therapy, light stretches, yoga ball, neck pillow for support, exercise (when I can) and it’s always important to learn to find mental stillness. People don’t put enough emphasis on meditation, but it’s actually one of the most important medications you can prescribe yourself. In other countries, doctors will actually prescribe meditation. Here in America, we’re too busy making money off of people’s illnesses so no doctor will tell you, “Go home and try to rest. Find mental stillness. Try to find five minute in your day to focus or listen to peaceful music and unwind.” But it actually starts my day off way better than if I don’t do it. It’s not a cure, but it helps. I also find that positivity is not a cure, but it has the same principle. It’s a de-stressor. It’s whatever helps. It’s not a cure…it just gets you through the day so you can cope with the pain a little better.
FD: How has Fibro affected your relationships, friends, family, partners?
Haullie: It has affected my relationship with my husband more than any other relationship because I don’t have many friends I hang out with in my real life. It doesn’t affect people around me. But it affects my intimacy. I can only really perform maybe once every month or two which is embarrassing. But my husband is kind enough to where he never pressures me. Not that it doesn’t affect him; he’s just gotten tired of it becoming an issue. It’s affected my ability to cook and clean all of the time because when you have a toddler you have mess all of the time. Generally our house is pretty clean… I keep it pretty clean, but there will come times when it gets messy and I can’t move around to get to it and I just feel like such a failure. Like I don’t want to do things like deep cleaning and those are things normal people do, like scrub the bath tub or kitchen sink. I de-clutter all the time, but can never feel like I can put that extra effort into my apartment. I want to be able to go that extra mile and I never can.
FD: What is the biggest challenge you face living with Fibro?
Haullie Being a mother. I always had this dream that when I become a mom, oh, I’m going to be running around with my child playing. I’m going to be doing arts and crafts all of the time. Or I’ll be doing the laundry and picking up all of the time. I just find raising a child to be the most difficult task I have ever faced. I can barely do it at times and find it hard to imagine that I am actually pulling it off. I have a son who hits, kicks, screams, punches, and talks back a lot. It’s not his fault; he just has a lot of energy and is a little delayed in his development and so he requires way more attention than other children. So I am actually doing double the work that most moms do. Because I have to do twice the amount of work to keep up with my child because he requires more attention and love than other children I find it more difficult, but I really try not to complain about it because I love doing to it regardless if I am in pain. It’s my job as a mother to do all that I can. He is my life and he is worth every minute, and every struggle we face together and I know we will both get through this together like any challenge in life because there WILL be more challenges to face so this is just preparation for the future and I welcome it. But it does make me sad that I couldn’t put on the puppet show for him, or dress up like a princess and hop around the house telling stories, or go bike riding all the time or run around playing tag. But what I can’t do sometimes I make up for with the things I know I CAN do. Like hide and seek, or reading him a book, or teaching him to read, etc.
FD: What inspires you to keep on fighting?
Haullie: Other people’s stories. Every time someone tells their story there’s always something in their story that I relate to and that shows me how strong they really are and so that tells me I must be a strong person, too, in some way, and that I should keep fighting this.
FD: What advice do you have for other people who are living with Fibro?
Haullie: Keep hope alive and try to find stillness from within. Get away from the negativity of life for a while. I know that’s easier said than done, but resting your body and mind is the most important message any Fibro survivor can give to you. Plus, you’re fighting a very tough battle from within not only physically but mentally, so you deserve the break. If it means taking a mini vacation, turning off the television for a while and reading your favorite book, finding new ways to speak to your doctor so you don’t have to struggle anymore with terrible medications that don’t work… or going for more walks and not pushing yourself to go beyond limits that your body won’t allow. Don’t do more than you can. Don’t feel the need to do what everyone else is doing and don’t guilt yourself because you didn’t do it exactly the way everyone else did. All you need to know is that you tried your best to feel better from the inside out. We are all different and we all have different levels of Fibromyalgia. Some of us can walk very well and some of cannot, some of us have head pain and some of us do not, some of us have tender points and some of us do not. It’s important never to judge each other because we are all uniquely different, but we are all in this together.
FD: Do you have a funny Fibro story you can share?
Haullie: I always joke with my husband and say, “Oh, geez…You know, I must be some kind of telekinetic. Because my Fibromyalgia is so bad, I can throw a muscle out just by thinking about it!” LOL!
Follow Haullie on Twitter: @haullievolker
Follow Haullie on Facebook: Voices of Fibromyalgia Facebook
Follow Haullie’s blog: Voices of Fibromyalgia
Check out Haullie’s radio show: The Fibro Show.
Check out Haullie’s Fibro documentary: Voices of Fibromyalgia Documentary
Check out Haullie’s new website: Voices of Fibromyalgia (Currently under construction, so keep checking in!)
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