I invite you, if you dare, to join me on my epic, unpredictable journey with fibromyalgia. Whether you are battling fibromyalgia yourself, another chronic illness, or another trial in life…I hope to inspire you with my journey, my trials, my mistakes, and ultimately my victories. I find great joy in blessing lives and hope to bless you in some way along this roller coaster ride.
Let’s start at the beginning because that’s the very best place to start 🎼🎼. First the basics: I am a twenty-something Ginger who loves books, theater, dogs, Disney and organization. I am a dreamer who inhabits an imaginary world almost more than reality. I have several different medical conditions that I currently battle and will continue to battle for the remainder of my life. I had absence type seizures when I was a child and thankfully grew out of that. As a child, I was a human pin cushion and a medication test subject, but I can proudly say I am an epilepsy survivor. During my senior year of high school, I was diagnosed with a common stomach condition (I am going to omit the actual name of the condition for now), and it is my constant companion. Then, at the tender age of 20, I was diagnosed with depression, anxiety and a form of PTSD due to a very traumatic incident. The FOCUS of this blog is on fibromyalgia, which I was diagnosed with at the age of 25 and my whole world changed. I was one of the lucky few to get diagnosed so quickly, but it required a lot of work and a lot of convincing. The fun part is you never know what each day has in store for you when you live with fibromyalgia.
What is fibromyalgia: It is a medical condition characterized by chronic widespread pain and a heightened pain response to pressure.
What causes fibromyalgia: Fibromyalgia is still a very new and misunderstood condition. Many seasoned doctors believe it is all in the patient’s head and instruct patients to throw pain medicine at the condition for the rest of your life without any further treatment. However, there are doctors out there crazy enough to champion our cause and take a leap of faith to try these new treatments. I am happy to report that new discoveries are being made and new treatments explored. One possible cause for fibromyalgia that they are researching is an over abundance of nerves in our arms and wrists.
What are the symptoms of fibromyalgia: Have you seen the commercials for prescription medicines where they seem to list an unending amount of side effects?! That’s about the same amount of symptoms that accompany fibromyalgia. I will go into detail later about this. Overall, everyday your symptoms are different and in different severities. Each person is different as well.
What is the treatment for fibromyalgia: At this point, there is really no solid treatment for fibromyalgia. I have been put on medications and then taken off of them. I have been told a healthy lifestyle. I have been told light exercise, particularly swimming in warm water. I love massages with a light touch. Many people have told me about different holistic and alternative methods that I haven’t had the financial or mental capacity to explore. Honestly, I am not trying to make excuses. It is just very overwhelming. I am currently trying essential oils and will share my discoveries soon. At this point, it is trial and error as well as every Spoonie is different.
What is a Spoonie: I will have a blog on this specific concept soon!! A Spoonie is an individual who suffers with a chronic, invisible illness. A chronic illness is also known as an invisible illness because Spoonies look healthy on the outside, but underneath the surface, the body is reaking all sorts of havoc. This feeds into doctors and others saying it is all in our minds. They say, “But you don’t look sick.” Some Spoonies, like me, are known to slap a smile on our face and exude a positive attitude to hide our struggles. Let’s be real – it is ABSOLUTELY exhausting.
How has fibromyalgia changed my life: I want to be clear that I don’t see myself as a victim to my condition nor do I want pity nor do I let it define me. However, every single day – every single decision – is made with fibromyalgia in mind because I will set my day up for failure if I don’t. I have changed my clothing, my diet, exercise – every aspect of my life. This will be another full blog post to come. It honestly blind sided me and turned my world upside down.
Why am I writing a blog now: I am a dreamer who lives in an imaginary world – in worlds in books – in worlds in theater productions. I have spent over 13 years working in theater, including a college degree and 4 years in Disney entertainment. It has sparked my creativity. I tend to be dramatic at times, silly and I make up fun words which funny enough my boyfriend has adopted (I learned from my mom to make up fun words and I didn’t know this was different until I repeated them in front of others). Now the serious reasons for this blog: My condition has gotten increasingly worse. Recently, I have been through 4 prescription withdrawals under doctor supervision to find the best treatment for me – two of these medications I had been on for quite a long time and two of them were new, which I also experienced SEVERE side effects. Combine all of this in a two month period and you are in ABSOLUTE HELL. Honestly – no joke: I don’t know how my boyfriend who I live with and my parents who live nearby are still sane. My two silky terriers who are turning 3 years old keep me sane and make hell livable. About 6 months ago, I made the heart wrenching decision to walk away from my dream job at Disney, which I worked toward for over half of my life. I fought for so long to make it work, but it just was time to close that chapter no matter how much it hurt. On a positive note: I ACHIEVED AND LIVED MY DISNEY DREAM. I also walked away from being a LuLaRoe clothing consultant because I couldn’t keep up with the demands of a small business at the time. I recently was hired on as a receptionist a few months ago, but I made a quick exit because my boss was a bully and my health was taking a nose dive as a result. I have been out of work several months now to deal with complications of my medical treatments, which I mentioned earlier, and to honestly refocus and regroup. I have definitely felt like a failure and worthless. My parents raised me to have a strong work ethic. Now my body can’t keep up with my brain and a busy life, which I miss. I LOVE being productive!!
Where I am now at this season in life: I feel lost honestly. My treatment for my fibromyalgia is currently under revision, up in the air, and unpredictable, which makes me feel more like a lifeless zombie than human. I don’t sleep much as of late. I have withdrawn from social engagements because of my health right now, which is negatively impacting my friendships. My parents and boyfriend are really the only ones who see me. I have no clue what I am going to do for work. I am so blessed that my boyfriend is helping support me while I am so sick and my parents have always done everything humanly possible to make sure I’m healthy and happy. Even if that means feeding me delicious breakfast burritos and putting gas in my car since I seem to like the “empty light” (I know it’s bad for my car). I now giggle a bit because my parents are like “really, your empty light is on again.” I do not take this for granted, and I find every possible way I can contribute like cleaning and organizing the house within my limitations. I am in quite a bit of debt between school loans and all the money required for being sick. It’s expensive being sick yet hard to work a full time job, which is a dilemma.
Overall, I hope my blog inspires you and blesses you somehow. This blog is my outlet to raise awareness for this condition as well as an outlet to connect with others, since this disease can be so isolating.
Thank you for reading my first post and hope you continue on this journey with me. Please click follow to read my posts. I will provide further information when I have more of a concrete posting schedule. I am a newbie blogger and am up for this challenge. This should be entertaining for all of us.
In conclusion, a statement from a stage manager who has diabetes has always stuck with me: “You can reach the same results as everyone else. You just have to accomplish it in your own unique way.”
-The Dramatic Ginger