This week’s Fibro Warrior interview is with Elizabeth M. Christy, of Sterling, VA. Of course, most of us know her as PotomacFallsMom, and now the author of “Why Does Mommy Hurt?”
When were you diagnosed? How old were you at the time?
I was diagnosed at age 25, 2 years after I got married. However, I started having symptoms at age 23, including back pain, difficulty with tasks of daily living (driving, drying my hair), and nerve pain. It was 2007 I believe. I was diagnosed with FM first. I was further diagnosed with Lupus/Mixed Connective Tissue Disease and Autoimmune Hepatitis in 2010, shortly after the birth of my son.
What lead up to your diagnosis?
My mother has Dermatomyositis (a rare autoimmune disease that attacks muscle and skin tissue), as well as Mixed Connective Tissue Disease, and Fibromyalgia, so I was aware that there was a chance I would develop autoimmune disease. In college, I was diagnosed with a rare, extremely painful, nerve disorder. When I googled it, I saw that it was associated with Fibromyalgia. Thankfully, that disorder went into remission after 2 years. Before the pain began, I developed Raynauds phenomenon in my hands, feet, and nose. I had no idea what it was; but it was very frustrating! I learned later that it can be an early sign of Lupus, and is also associated with Fibromyalgia. After a few months of Raynauds, I began experiencing general pain and fatigue off and on… and then just on! I was a gymnast for 10 years, and I originally thought that it was pain from an old herniated disk injury. However, the pain spread all over my body, my skin, head, feet, hands, etc. When I started having joint pain, I made my first Rheumatologist appointment. I was diagnosed with Fibromyalgia during the first visit.
What was your family/ work life like at the time?
I was a newlywed and had just started a new job, and had severe insomnia/anxiety. I believe the lack of sleep is what caused my first major flare. I sat at a computer all day, and had severe back pain. My first joint pain developed in my right hand (from using a computer mouse).
How did your family initially handle your illness?
This is a difficult one for me. No one believed me. My mother, with the same diagnoses that I have now, my identical twin sister, a Physician’s Assistant, and my husband, all attributed my complaints to “worry.” They assumed that I was just afraid that I would develop my Mother’s illnesses. With Fibromyalgia, there is no blood test; there is no “proof.” It is invisible. If loved ones want to deny that you are sick, it is very easy for them. I understand why family members would be in denial; it is difficult to see your loved one suffer. I experienced the same thing with my mother, when I was growing up. I remember thinking that she “complained too much.” It wasn’t until later, when her disease became visible, that I truly believed her. I am appalled at myself for doing that to my mother, but it also helps me understand why my family members didn’t believe me.
Unfortunately, it took positive blood work in 2010 for my family to believe me (but with blood work, there is really no choice in the matter). Now, my mother is my biggest supporter; she is the only one in my life who truly understands what I’m going through. My sister has become my own personal on-call doc! She is wonderful. I can call her anytime with questions about blood tests, procedures, medications, and she is always helpful and supportive. My husband took a long time to come around. I don’t blame him; I don’t know what it’s like to have a spouse in so much pain, to watch them suffer day after day, and have absolutely no power to stop their pain. Many Fibromyalgia marriages fall apart; but thankfully, we have made it through the worst parts; diagnoses, denial, anger, ect. He now accepts my illness, and is one of my biggest supporters! My son was born into my illness, so it is all he knows, which creates a lot of guilt. As soon as he was able to communicate, I tried to explain to him “why mommy hurts.” He asked a lot of questions; it was very hard for him to grasp to concept of “chronic,” no surprise for a human that’s only been around for a few years! That is why I wrote Why Does Mommy Hurt?, to open up communication about living with chronic pain for both children and parents alike.
How has your family/ work situation changed since Fibromyalgia entered your life?
I used to work full time. After having a son, I began working 4 days a week, but it was too much. I now work 3 days a week. It is a great balance; I have a toddler, so sometimes being at home is more exhausting than being at work! My schedule gives me a lot of flexibility, and my company knows about my illness and is very supportive when I have to miss work or come in late (which unfortunately is quite a regular occurrence).
What do you feel is the most challenging aspect of Fibro?
Losing Hope. Waking up in the morning so completely hopeless and exhausted that you wish you could sleep forever. Going to bed at night with no idea of how you are going to manage to do it all again the next day. Many days, I have the vivid sensation that I am running a perpetual marathon. I have learned to cope by taking each day… or minute! as it comes.
Do you have any other co-existing conditions? If so, what are they and howdo they impact your Fibromyalgia?
My Autoimmune diseases and Fibromyalgia are 100% intertwined; so much so that it is almost impossible to tell which disease is causing the pain on any given day. Autoimmune hepatitis, however, has almost no symptoms, yet it is the most life-threatening of all of my diagnoses. It was a miracle that my doctors even discovered it. I was prescribed methotrexate, which causes liver toxicity, and requires liver testing, thus leading to my diagnosis. A.H. also runs in my family. My aunt wasn’t so lucky; she didn’t develop other painful autoimmune diseases, and was diagnosed at stage 3. I have stage 1 autoimmune hepatitis.
What (if anything) have you found/ done that has improved your symptoms?
I have come to rely on a blend of western medicine and natural remedies. Originally, I only used Western Medicine, but it wasn’t enough. I am on an anti-inflammatory diet, which has helped tremendously, especially with the fatigue. Removing gluten from my diet is the best decision I’ve ever made! I also went through a course of TMS (Transcranial Magnetic Stimulation), which is the only thing that has ever helped with the debilitating depression and hopelessness that go hand-in-hand with Fibromyalgia. Traditional antidepressants did not work for me. Shortly after starting TMS, I started writing, and I began the process of publishing “Why Does Mommy Hurt?” I believe depression caused by chronic illness is categorically different than traditional depression, and TMS is an excellent option for FM patients that are struggling with hopelessness and mood problems. Interestingly, it is now in clinical trials as a treatment for Fibromyalgia itself! (TMS is an FDA approved treatment for depression that is covered by most insurance plans).
How open are you with friends & family about your illness & symptoms?
I am very open. Originally, I was embarrassed, especially after so many of my own family members didn’t believe that I was actually sick. But now, I consider myself to be an advocate for invisible illness; I blog regularly about my personal struggles with the disease, and one of my biggest goals is to give other patients HOPE, and community.
Do you blog about your illness? If so, what inspired you to do so?
I started a blog about a year ago, but I didn’t plan on blogging about my illness. However, that changed one day when I realized that Fibromyalgia was very real, and that is was not my fault. It seems crazy, but it took me several years to not feel shame at the diagnosis. I wrote a piece called “The Invisible Affliction,” that ended up being published in a Northern Virginia magazine, as well as shared on myinvisiblelife.net and the National Fibromyalgia and Chronic Pain Associations website. Now, the topic of my blog is on the “harsh and wonderful realities of living and parenting with chronic pain and autoimmune disease.” My target audience is parents that are struggling with Fibromyalgia, chronic pain, fatigue, or AI disease.
What is the best advice you’ve received regarding Fibromyalgia?
Trust your body. Accept your limitations. Don’t blame yourself. Be your own advocate. (All from my mother : ) )
What was the worst advice that you followed?
Doctors used to advise FM patients to exercise as much as possible. Recent research has shown that vigorous exercise often exacerbates FM symptoms. That was the case for me. I tried every type of exercise I could think of, even Tai Chi, but I always ended up in pain for days afterwards. I thought I was doing something wrong, because I trusted my doctors. Reading that research has made me realize that each individual really does have to listen to their own body, and be their own advocate.
What is your favorite way to cope with your life as a Spoonie?
My favorite thing in the world is to wrap myself up in an electric blanket on a recliner with a cup of tea and listen to relaxing music or watch a POSITIVE movie. This, of course, also requires that my son be in bed ; )
What is one thing you’ve learned about yourself since your diagnosis?
I am incredibly strong. I used to be afraid of everything, and now, I fear nothing. I know now that I can achieve anything that I believe myself capable of.
Is there anything else you’d like to share with our readers?
I also run a small non-profit that promotes reading to babies and toddlers. We package formula/nursing supplies with childrens books and bilingual informational brochures for parents, and donate them to local area foodbanks. It is called “Books and Bottles”, and is on Facebook: Facebook.com/BooksAndBottlesOrg
Now that you’ve gotten to know Elizabeth’s story, check out her blog and get to know her better. Her book, Why Does Mommy Hurt will be available in the summer of 2014. You can also connect with her on Twitter and Facebook.
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