Fibro Warrior of the Week (#15)
FWOTW: Leah Tyler
Location: Phoenix, Arizona, USA
Facebook: The Fibromyalgia Fun House
Mantra: “All your life you are told the things you cannot do. All your life they will say you’re not good enough or strong enough or talented enough; they will say you’re the wrong height or the wrong weight or the wrong type to play this or be this or achieve this. They will tell you no, a thousand times no, until all the no’s become meaningless. All your life they will tell you no, quite firmly and very quickly. And you will tell them yes.” –Nike advertisement circa late 20th century
Leah Tyler is our 15th Fibro Warrior of the Week. Leah is a wild ride; a gypsy- hearted Fibro warrior who believes in not giving up. Outspoken and off-the-cuff, she writes fiction in addition to her Fibro pieces and can down carafes of water with the best of ‘em… -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Leah: I am from California, a native born Angelino. As an adult I’ve become a tad nomadic and spent many years traipsing up and down that long state. Up to Northern California for college, then back to L.A. upon graduation. It didn’t take long to remember how much I disliked tinsel town so after I got married we moved to San Francisco for six years. Three years in I got Fibromyalgia. The cold wet climate wreaked havoc on my pain so Goldilocks picked up and relocated to Arizona to thaw out. After five years in the desert I am cooked to a crisp. I currently live in Phoenix with my husband and two fur babies, Yorkie & Porkie. We will one day make it back home to Los Angeles and that will be the last time I move. Ever.
FD: When did you first suspect that something wasn’t right? What happened?
Leah: I suffered a near-fatal pancreas attack in November 2004. The following June I went through my own personal hell week and haven’t been right since. Over the course of five days I experienced five significant life events, only one of which was an emergency. Of course now I wonder why on earth I was expecting Superwoman to show up. But that woman I was; she was used to accomplishing whatever she put her mind to so didn’t think about things like that. After that week, I started experiencing intense pressure in my trunk/stomach and feeling like the muscles in my legs were separating from the bone. Fatigue and lethargy quickly claimed me in a rapid downward spiral.
FD: When were you diagnosed with Fibromyalgia?
Leah: About a year later, in 2006. At the onset of symptoms I immediately sought out answers from my doctors who ruled out any GI complications from the pancreas attack, but couldn’t tell me much more than that. I took a voluntary demotion at work to reduce my stress and hours and searched hard for a doctor to help me. My health was rapidly declining and life quickly slipping out of my grasp. I eventually found one, a doctor completing his residency at UCSF medical school, who began the slow and meticulous process of ruling out myriad illness which shared my symptoms. Finally I was given the diagnosis of Chronic Fatigue Syndrome/ME and Fibromyalgia. I found an endocrinologist who confirmed this diagnosis.
FD: When you received your diagnosis, how did it affect you?
Leah: The final test to obtain my diagnosis was a MRI to rule out Multiple Sclerosis. When I found out I did not have MS, I was very grateful… and more scared than I had ever been in my entire life because there was now officially no answer for why I was so sick. My doctors didn’t know how to treat CFS/ME or Fibromyalgia and told me to learn how to live with it. They didn’t realize what an impossibility that was, how debilitating my pain and fatigue truly were. I was scrambling to fulfill my obligations in life and failing miserably, which was only making me sicker. Shortly after diagnosis, I had a complete emotional breakdown; my body crashed and mind went with it. Simply standing up felt like I was violently crushing my internal organs. The fatigue was so debilitating I had to lay down for a half hour after showering before I could put lotion on my body. Exercise, work, friends, the life I used to live, all were painfully ripped away from me and I was just supposed to live like this? I felt like I was trapped in a horrible Twilight Zone parallel universe jettisoning me quickly to hell. One of my doctors took me out of work for a month. The state of California provides short-term disability and thankfully Fibromyalgia was an accepted illness by then or I don’t know what I would have done. We were already horribly strained financially from all my health problems. That one month became seven, but I worked hard and was able to return to my job part-time.
FD: Since then, how has your outlook on life changed?
Leah: If there is anything wider than 360 degrees that’s how much my outlook on life has shifted. Literally from the ground up, taking very small baby steps and falling on my tush every third one or so, I learned how to live different. After my breakdown, I found a speck of strength and refused to believe this was as good as the rest of my life was going to get. Determined to figure it out I started educating myself on human health and illness. It didn’t take long to discover a whole other world existed beyond the chemically-manufactured pharmaceutical-filled one I grew up in. I sought treatment from a medical doctor at a specialty clinic utilizing both holistic and modern medicine. Oodles of supplements, prescription meds, bio-identical hormones, acupuncture, yoga, physical therapy, chiropractic, massive dietary changes, oh you name it I have done it. I can’t credit any one thing with getting my life back, for I feel every component played its own important part. I had to learn to respect the laws of nature and the way the human body is designed to fit into these principles. It is directly adverse to the modern American lifestyle.
FD: How does Fibro affect your day to day life?
Leah: Like many Fibromyalgia patients, I suffer from other complicated medical conditions as well. It is hard to differentiate what is related to Fibro and what isn’t, but my life has radically changed since I got sick. In 2005, I was a stressed out department store cosmetics executive (with a paycheck). Now I am a blogger and health advocate who is writing my first novel and joyfully pursuing the passion of my life (without a paycheck). I used to play as hard as I worked, now sleep and happy thoughts are my main priorities. Surprisingly I am finding more purpose and meaning now than I ever imagined possible then. Continually challenging myself, be it learning how to jog or taking Spanish, makes me work out my failures and limitations and gain confidence to keep expanding my world. Things were very small for a long while. I don’t like small. The world is a big place and I will never stop finding new ways to fit into it.
FD: What can’t you do anymore because of Fibro?
Leah: What can’t I do? Lots I suppose, but if I think of it like that I won’t get out of bed in the morning. The most frustrating part of keeping my Fibromyalgia managed, besides feeling fluish a great deal of the time, is putting myself first. Not drowning in guilt when I can’t keep up with my healthy cohorts. Saying no and not feeling like a terrible person who only cares about herself. We aren’t born knowing how to live sick and it is hard to learn. So is realizing how very little control we actually have over our own lives.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Leah: Before I was sick, I’d certainly never pictured myself researching medical issues and filling a website with articles and blogs! A huge benefit of not working full time is that I’ve been able to devote more energy to writing fiction, and I finished my first novel a few months ago. I’m working on re-writes now and planning to shop it around to publishers before long.
FD: What has been your experience with seeking medical treatment for Fibro?
Leah: Horrible, save for the specialty clinic which was horribly expensive. Doctors are confined by science and science doesn’t understand Fibromyalgia yet. It is a very dangerous situation because patients can be mistreated and abused while trying to figure out why they are sick. This contributes significantly to the social and economic stigma of having Fibromyalgia. I sought the advise of multiple doctors when I got sick. They all ran a standard CBC and declared me healthy. But I wasn’t, no matter how much they tried to convince me. One put me on an anti-depressant. I insisted I wasn’t depressed, there was real physical pain and fatigue sucking up my life, but I was dismissed. Conversely, during my two strokes and four pancreatitis hospitalizations I was taken seriously and treated with respect. Diagnostics exist to detect those, by the way.
FD: How has Fibro affected your relationships, friends, family, partners?
Leah: I thank God daily for my husband standing beside me every step of the way and know I fought so hard to come back because he believed in me. Sadly my peripheral relationships have not faired so well. The handful left are my true quality brethren I will know forever and accept me for who I am. The rest are gone. I have to focus on the key relationships in my life that add value, don’t drown me in stress over the person I just can’t be. And most important I have to let all the hurt and disappointment and unfairness inflicted by the ignorance of others go. There is nothing I can do about it and holding on or expecting them to change only makes me bitter.
FD: What is the biggest challenge you face living with Fibro?
Leah: Being me, respecting the limitations my illness places on my life, but not being “Fibro.” For a long time when meeting someone new, I’d tell them my name and in the same breath inform them I was sick. In retrospect I suppose I was trying to explain why I don’t live like they do. I don’t do this anymore. My health has been on an upswing and I am starting to find myself again, the girl whose progress was so painfully halted at the age of 28. That has helped tremendously, but so has dissolving the need for approval. It was deeply ingrained in me and I fought for years to make everyone understand my reality, puddling into sorrow and heartbreak when they didn’t. I have found the greatest strength in not caring if they understand or approve. I know what I have been through and don’t need anyone else’s justification to own it. If I am judged because I live my life different or held to the same standards as healthy people, there is nothing I can do about it. But man that is hard! From the youngest age, we seek acceptance from our families and peer groups. It’s a function of society and very hard to shake.
FD:What inspires you to keep on fighting?
Leah: The absolutely terrible way patients with Fibromyalgia can be treated. Blamed for their illness, dismissed as hysterical, told they are mentally ill. I can tell you first hand if somebody is knee deep in the trenches of severe Fibromyalgia and they are not depressed, panicked, erratic or distressed THAT is a blaring sign of mental dissociation. We are dealing with a physical illness that must be addressed or will get worse with time and stress. Too many are sent home to learn how to“deal with it” like I was. For me, it only got worse and worse until I wanted to die because I didn’t see any other option. This is absolutely unacceptable and despite the FDA approval of three medications to treat Fibromyalgia, still goes on.
FD: What advice do you have for other people who are living with Fibro?
Leah: Do not give up! Fibromyalgia can become a severely debilitating illness which is very hard to get managed. It is often difficult to find the right treatments, for there seem to be so many different causes and manifestations individual to each patient. Finding the right doctor can seem impossible. But believe you are worth fighting for! Believe you are capable of educating yourself and finding ways to make this illness less impactful to your life. And most importantly believe you still add value to the world, even if you have to look in different places to find it.
FD: Do you have a funny Fibro story you can share?
Leah: Well, I went out to breakfast with my husband last weekend. The waitress brought us a carafe of water. My husband filled both our glasses. I looked at my full glass, picked up the carafe and brought it to my lips. I couldn’t figure out why I was tipping my head back and not getting any water when the glass was full. Then I realized I had the carafe to my mouth, not my glass. We laughed really hard at that one. And of course my lipstick imprint on the rim of the carafe kept us giggling until we left the restaurant.
Follow Leah on Twitter: @FibroFunHouse
Like Leah on Facebook: The Fibromyalgia Fun house
Follow Leah on her blog: Chronicles of Fibromyalgia
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