My Story

I was 21 when I was diagnosed with Graves disease and I thought my life was over. Here I am, 13 years later, 4 kids, a successful career, helping my husband with his business, renovating a home, and less than a month ago I was diagnosed with Fibromyalgia. I guess it all makes sense now. I’ve suffered with unexplained pain mostly in my arms and shoulders for years but in the past year I’ve experienced all over body pain. I refused to even consider Fibro at first.

It wasn’t until my husband gave me an unexpected hug in our kitchen and a shock wave of pain from my head to my toes sent me into a roaring scream that we finally rushed to the doctor. I was use to crawling into my usual “preparing for a hug” position, naturally, but I wasn’t ready that day and realized that I had been preparing for hugs for quite some time. Early 2017 brought about new pain in my hips, knees, and wrists. I was finally getting seriously concerned about myself. As a busy wife and mom I usually put my issues to the back burner.

I am go getter, a doer, a non-stop runner. Whether I am running an analysis meeting for a 500 employee company, creating a quote for my husband, helping my oldest with college, or running a book that one of my kids forgot to bring to school, I am always on the run. All of the sudden, I am paused. I stand and my knees almost buckle, I am crawled over in a shower bawling out and in tears, or feeling bad that I can’t read my son a book because my brain is foggy and the words are all blending together. This is my life and my life is different. I am different. My mind is different. How could this be? They tell me there is no cure, that there is no treatment, there is not enough information and the diagnosis is by ruling out everything else that could potentially kill me. So that’s it, I guess I should be happy that my new diagnosis is not terminal, so they say… I just don’t accept those options as final for us.

Trust me, I am certainly grateful to have the rest of my life ahead of me but I am wondering what kind of life it will be. I am suffering in extreme pain that I know is not treatable and can flare up at any moment without warning. I am speaking with women who have had fibro for 25 years and they tell me it doesn’t get easier. My heart is dropping and as strong a woman I am start to feel like I’m losing it, like I am losing myself. I’ve lost 40 pounds in 6 months because the mixture of pain and nausea makes me sick to even smell food. Will I keep losing weight? Will the pain subside? So many questions and no answers.

I am going to take a journey now. This journey is on a road I’ve never travelled before. I have travelled so many roads. In fact, my husband and I pride ourselves on our nomadic capabilities to enjoy every environment. We hike, we camp, we take the back roads, we hike over rocky mountains, and through water filled trails. We uprooted our family and moved from NY to SC, a place where nobody knew our name. We are risk takers and we take chances. We have travelled all over the US and abroad from Vegas, to South Beach, Cancun, Bahamas, and even a Baltic Cruise that would include docking at places like Estonia, Sweden, and Russia where I saw works from Picasso in person at the Hermitage Museum. I earned every one of those trips through hard work as reward from my company for a job well done. Are those days over? Can I travel? I can barely walk around my block right now and a ride to the next town hurts my hip bones…

I guess that is what we will have to see and the reason behind this blog. Please join me on this journey as I push myself and stop myself. As I log good days and bad. I am looking for a correlation, an explanation, something that will help me understand where Fibro came from and how I can master it. If I am to have Fibromyalgia I will make her my best friend! She will push me, motivate me, and be honest with me. I am determined to find an answer, if not a cure. I will document every adventure and capture all the moments along the way.

Let’s take a trip across the country. Let’s talk to other Fibro warriors and see what makes them the same or different than me. Let’s talk to their spouse turned car givers and learn what life has become and how they see their future now that fibro has entered their lives. Let’s own this illness!

I am ready to explore this world with a new set of eyes. A set of eyes that see’s people just a little different than I did before. I understand that everyone is fighting a battle and I don’t want to make their life or day any worse than it is. And if they are having a great day and life I don’t want to be the one who ruins that for them. I am in pain, a pain that I don’t wish on anyone else, not even my worst enemy. Nobody should suffer in unexplainable, untraceable, chronic, forever pain.

I realize  with these new eyes that you can’t say what you would do in any situation until you are actually in that situation. I would have told you about all the things I would do different in my previous life but that is not how I see the world anymore.

I am now looking at the world through Fibro eyes….