I have been a follower of Dear Fibromyalgia almost from the start. The page is “devoted to educating, supporting, and sharing experiences on Fibromyalgia and co-morbid diseases, with emphasis on surviving/coping with the day-to-day problems faced living with chronic illnesses.” She has a way of using just the right quote with amazing striking artwork.
Melissa: Beth, you stated that you “first became ill in 2011,” and “although looking back, I believe I’ve had this “thing” inside me for many, many years.” Looking back, can you remember some of the symptoms you were experiencing prior to 2011, and how old were you at the time?
Beth: I won’t get into all of the details, but for as far back as I can remember, I had a lot of stress and fear growing up. Don’t get me wrong – I had a very privileged upbringing. My father was (and still is) an amazing man who was very successful and loved us dearly. My teachers always commented that I was a very shy student, which I definitely was, but I had a lot on my mind. My imaginary friend, Minna, helped me get through a lot of rough times.
I’ve always wondered if the chronic stress had something to do with my health as I’m the only one in my family who’s ever had Fibromyalgia. As a young girl (ages 7-12), I can remember my mother taking my sister and me shopping for school clothes at big stores in New York city (Bloomingdales, Saks, Macys), and I absolutely dreaded those trips. The stores made me feel ill, and I couldn’t tolerate the lighting or the smell of the clothes. I’d develop headaches, bloodshot eyes, and my attitude was miserable, but I had no idea why I felt that way and figured it was because I had to spend the day with my mother who wasn’t a fun person. Needless to say I would get scolded for my behavior. The funny thing was that I loved having new clothes (what girl doesn’t?), but to this day I still can’t tolerate “big box” stores, and I do as much of my shopping online as I can. I suffer from hyper-vigilance, so being in crowds with all of the noise and odors makes me extremely anxious. I cross my fingers every time I go out in public that I don’t get a whiff of something that triggers my MCS because my reactions are severe and frightening.
From the time I started my menses at 12, I had horrendous cramping. My parents took me to a specialist when I was in high school, and I had an exploratory laparoscopy, but the results were negative. I missed out on so much of life due to being bedridden for 1-2 days almost every single month. My doctors prescribed so many different medications, but nothing worked to kill the pain. I also suffered with PMDD and would make some irrational decisions and actions. By the time I was 40, I demanded to have a partial hysterectomy as I was afraid I would overdose on pain killers, my work was suffering due to absenteeism, and I was raising two children on my own. That was the best decision I ever made. A year later, I had to have an emergency oophorectomy due to fibroid tumors causing torsioning (twisting of a bodily organ or part on its own axis). Menopause started immediately after the surgery.
Over the next 9 years, I would develop frequent 24-hour flus and seemed to catch every virus my kids brought home. When I moved to Florida in 2005, I got my insurance adjuster’s license and worked as a CAT adjuster for personal property losses. This meant going into structures damaged by hurricanes or fire. After each job, I’d develop severe fatigue, headaches, and weakness. I saw specialists, but no one was able to diagnose this reaction. They suspected that I had an allergy to mold and chemicals used to put out fires. My primary care doctor put me on methylprednisone after each job. Finally, in 2009, I had to give up this career. That’s when I returned to college and started a housekeeping business.
Melissa: How did this drastic change affect your relationship with your friends and family?
Beth: I went from running my own business while attending college full-time to be an RN, maintaining a 3.9 GPA, volunteering at my kids’ high school as Booster Club President, operating the concession stands at home football and baseball games, planning fundraising events, travelling, being an avid gardener, maintaining a four-bedroom home, and the million other activities I loved to juggle, to being bedridden, frustrated, in tears most days, and extremely depressed.
During the 2 years it took before being diagnosed, I never saw any of my friends, nor did I want to talk to them on the phone as I never had any good news. I basically isolated myself from everyone except doctors and hospitals. My family was beginning to wonder if I was indeed losing my mind, although my children and mother who were living with me witnessed the seizures, the loss of motor function in my legs, the fatigue, etc., knew that there was something very wrong. They saw me go from 100 miles an hour to a dead stop, and that wasn’t who I was. My relationship with my brother and his wife was ruined as they tried to convince my family that I was a “drug seeker” and one time refused to take me to the ER when I’d lost motor function in my legs. I’ve since moved away from central Florida where they live, and have almost no contact with them.
After my diagnoses, my friends and family were extremely supportive and concerned. My daughter took a semester off from college to take over my business, and my son never complained whenever I’d ask him to do anything. My father spent time researching Fibromyalgia treatments and brought me to see an immunologist in Fort Myers where I received peptide injections. I never felt so good in years, but I was unable to complete the protocol due to having gall bladder surgery. The trauma set me way back, and the expense of the treatments was too much to ask my father to continue to pay for.
It’s very true about how when you have FM that you no longer enjoy talking on the phone. When I’ve posted articles about that topic on my page, we always receive comments like, “I thought I was the only one!” No, it’s true, and for this reason I’ve lost contact with many old friends. Living with FM can be very isolating, and you have to force yourself to be social. I no longer can tolerate drinking alcohol or being around large groups of people. One time I had to run out of a wedding reception as I thought I was going to have a complete meltdown when the dancing and loud music started. In my “healthy years,” I would have been one of the last people to leave.
Melissa: What changes have you had to make in your life?
Beth: Basically everything in my life changed. I had lost my career, my home, my lifestyle, my identity, my financial security, and my pleasures and purpose in life. My illness not only affected me but also my children. It was very difficult for me to have to pull my son out of the private college he was attending in Ohio because I could no longer afford it. He went there on a football scholarship and had to come home during his Sophomore year and start working. My daughter was able to graduate from UF, but now she’s saddled with student loans because I couldn’t help her financially. Everything I had planned for in life for myself and my children has all changed. My “Bucket List” is now referred to as my “F-it List” (lol).
Melissa: Besides having Fibromyalgia, like the majority of us, you have been diagnosed with a list of “evil sidekicks.” They include CFS, Sjogren’s Syndrome, Hashimoto’s Thyroiditis, severe multiple chemical sensitivity syndrome, Interstitial Cystitis, arthritis, DDD, bulging lumbar discs, Levator Ani syndrome, bone spurs, osteopenia, an anxiety disorder, depression, and severe allodynia and parasthesias from the Fibro.
Have you been able to find the right balance, treatments, medicine, therapies, etc., to help manage your illnesses?
Beth: As I mentioned before, I have some very good doctors here and feel like I have a fairly good grasp on managing all of my conditions. Ridding my life of the earlier stressors has had a tremendously positive impact on me, both physically and mentally. Stress is to fibromyalgia like fuel is to a fire. I also try to keep my life very routine as I find I cope much better. My body no longer can handle either distress or eustress (good stress) very well. Between the Fibro and Hashimoto’s, I’ve developed a real problem with anxiety which requires medication and exercise to control it. A walk along the beach or a day working out in the garden does wonders for stress.
Melissa: What treatments do you recommend?
Beth: Treatments for Fibromyalgia have to be personally tailored to fit each individual because what works for one person doesn’t necessarily work for another. Managing FM takes a multi-disciplinary approach of medications, vitamins and minerals, lifestyle changes, exercise, an uninterrupted 8 hours or more of sleep, stress reduction, and making your health your number one priority in your life. There can be a lot of guilt in people who are battling FM because we can’t do many of the things we used to and often times have to say “no” to people because we’re concerned about triggering a flare-up. It takes a while to learn how to navigate your life and learn your limitations. We may not like our “new normal,” but we have to learn to accept that this is the way our lives are going to play out. Fighting it or being constantly angered about it will only hurt you in the long run. Reaching the phase of acceptance is a very important milestone in your treatment.
Melissa: Beth, you stated, “A week before my SS disability hearing in May of 2013, I decided that the only way I was going to be able to help people and regain a purpose in life was to start an online support group.” What did you want your page to represent?
Beth: When I was growing up, there was a column in the newspaper called “Dear Abby.” So when I thought about what I wanted to accomplish with starting a support group, I thought about her. People would write in for advice, and Abby offered solutions to their dilemmas. I had learned all of this medical information in college, and I knew I could put it to good use. There was quite a bit of erroneous information being spread around Facebook, so I wanted to make sure our followers were given accurate facts about Fibromyalgia and its comorbid conditions. I also felt it was important to share the latest medical research so people wouldn’t lose hope. Finally, I wanted a place where people could come and feel understood, were listened to, and had their questions answered.
Melissa: Did you imagine that in two short years you would acquire over 47,000 followers?
Beth: We actually just hit 50,000 on Easter Sunday. I don’t “celebrate” these milestones because it just doesn’t feel right. I do, however, acknowledge our milestones and make sure to thank our page supporters because without them helping each other, offering advice, and helping to spread awareness, we wouldn’t survive.
Melissa: What or who inspires you?
Beth: I’d have to say my two children are my biggest inspirations; without them, I don’t think I’d be here today. They kept me going and continue to be my two biggest supporters. We’ve always been very close as I encouraged them to speak their minds when they were growing up. I grew up in the days when you did as you were told and kept your mouth shut. That wasn’t the kind of parent I wanted to be. They have turned out to be remarkable adults with very strong characters, beauty, generosity, great senses of humor, and they love their Mama! I have so much to look forward to when it comes to my children and their lives, so I want to be around for all of it – especially one day being called “Grandma”!!
Melissa: Tell me about Dear Fibromyalgia‘s team.
Beth: I currently have two page administrators who graciously volunteer their time helping me with our public page and private group page. Michelle Pena has been with me for almost as long as we’ve been on Facebook, and she currently oversees our private group, Dear Fibromyalgia Angels. She lives in Idaho with her husband and 3 children, two of whom are special needs children. Although we’ve never personally met, I feel such a strong bond with this woman, and we’ve developed a very close friendship. I love her spirituality, sense of humor, and strength. She’s also very warm, caring, and amazingly artistic.
Marylynn Merritt joined us in September of 2014 after my dear friend and page administrator, April Zink, passed away. Marylynn immediately offered her assistance as she knew that Michelle and I were having difficulties keeping things going while we were grieving the loss of our “Yaya.” Marylynn is a retired LPN who lives in Montana with her husband and two grown children. She is so caring and generous with her time, and she genuinely cares about each person she comes into contact with on our page. Her knowledge from nursing has been a wonderful asset as well. We all have our health issues so when one of us is down, we can rely on each other to pick up the slack. I’m blessed to have these amazing women on my team!!
Melissa: The artwork on Dear Fibromyalgia is amazing. Are they your creations?
Beth: Thank you!! Yes, most all of them are mine.
Melissa: Where do you get your inspiration for your art?
Beth: Creating artwork is an amazingly therapeutic hobby, much like the newest coloring craze. My inspirations come from all over – personal experiences, quotes, and just looking at a photo that causes a light bulb go off. I subscribe to a couple of downloadable artwork databases, and find some gorgeous photos on there.
Most of my inspiration comes to me late at night, when everything’s quiet. Fibro has turned me into a night owl, so I’m usually awake and feel the most energetic at midnight. I can go for a week or more without feeling very creative, and then suddenly I’ll be up half the night designing new graphics. I’ve learned a lot about designing and what people respond to over the past almost three years that Dear Fibromyalgia‘s been on Facebook.
Melissa: What do you see in your future?
Beth: I take things one day at a time. That’s the best I can do. It’s difficult to plan anything because you never know from one day to the next how you’re going to feel. My spinal issues are progressive, so it’s difficult to say how that’s going to affect me years down the road.
My son has a friend who is researching Fibromyalgia with a team from all over the world. She told my son to tell me to hang in there, and that’s about all I can say due to the nature of their research. My hope is that one day I’ll live to see a cure for this disease.