My Story

Hi all, thanks for taking the time to read my blog. I started this blog as a way of documenting my daily journey through life with Fibromyalgia. I do my best to document not only the bad, but the good as well. There are many frustrations that come from living with this condition, but I have learned so much about myself, others, and my faith.

About me

I have two amazingly supportive parents and a loving younger brother. I wouldn't survive without them. My family is my whole world. They are my advocates and my support system, they listen to me and talk me through hard days. Now, they all live on the other side of the country with a three hour time difference. I miss them terribly, but am so lucky to be able to talk to them everyday.

I love love love animals. I have owned, lived with, and/or raised dogs, cats, birds (parakeets, a cockatiel, and a conure), fish, hamsters, rabbits, reptiles (a bearded dragon that was my brother's, and a water monitor), horses, turkeys, and pigs. One of my favorite hobbies is horseback riding. Nothing beats a long ride in the warm sun.

One of the things that keeps me going the most is my faith. I believe that God would never give me more than I could handle. He knows my good days and He knows my bad days. Having someone there to help support me, love me, guide me, and give me strength at all times is the only way I have gotten through the many trials that come from dealing with chronic illness. Having Fibromyalgia reminds me that I am dependent on Him for all things.

The Road Towards a Diagnosis

I was seventeen and a junior in high school when I was first diagnosed with Fibromyalgia. It was a long road to get there, but as my mom and I sat in the rhuematologist's office, we were so glad to finally have a name. Since then, I have been told I have other conditions as well. Some that stem from the Fibromyalgia, and some that are conditions all themselves. We were happy to finally have a name, confused how to move forward, and exhausted from searching. It was years before that my story really began.

I had a normal childhood. I had a younger brother and two boy cousins who I rough housed, played rough, and got dirty with. I was a normal tom boy and did everything the boys did. The only difference was that I was born lactose intolerant and I continued to go through bouts of lactose intolerance as I grew older. Sometimes I could drink all the milk and eat all the yogurt and ice cream I wanted, and sometimes I couldn't. Apparently this is fairly normal for kids. By the time I reached college it was very apparent dairy was not to be a part of my diet. Now, I stay away and I generally do okay.

It was in elementary school going into middle school that I began to have severe pain in my knees. I struggled to keep up with the other kids and had to wear bulky knee braces to minimize knee pain. The more I grew, the more painful my knees became. My pediatrician sent me to a specialist who prescribed physical therapy and special knee braces with hinges. While there was some relief, there was clearly an underlying condition that needed to be evaluated. Surgery was discussed and originally the plan was to do the surgery after I stopped growing, around twenty-one years old. That, however, didn't pan out. My knees began dislocating daily and the pain was increasingly difficult to manage. Surgery was moved up to my sophomore year of high school. One right after the other, and then more physical therapy. The surgery was semi-successful. While my knees no longer dislocated daily, there is still pain involved; especially during physical exercise and walking up stairs and inclines.

It was also middle school that I began developing sleep problems. I struggled to not only stay asleep throughout the night, but I had trouble falling asleep. I developed night terrors and anxiety, thought to come from my lack of sleep. I was exhausted throughout the day and had trouble staying awake during school. Somehow I managed to pull a 4.0, but it was not without extreme difficulties.

By the time high school came around I thought I had most of my "issues" under control. I was back to being a normal pre-teen.

The Accident

It was my freshman year of high school and I had just gotten my first horse. A beautiful grey gelding whom I adored, and of whom adored me. In a freak accident, he spooked, throwing me, and injuring himself...I broke my right shoulder and elbow, sprained my right wrist and ankle. I spent several hours in the dirt as the paramedics struggled to find me. The lead technician argued with the doctor to get me more meds, as they were going to need to carry me down an embankment, across a small creek, up the other side, and then drive half a mile down an unpaved, unfinished, dirt road. Before driving the twenty minutes to the hospital.

After two surgeries to repair the shoulder, nearly ten weeks sleeping in a recliner chair (most of which my mom slept on the couch next to me), and months of physical therapy before the doctors decided I was "recovered". There would be residual pain and I would never regain 100% rotation, but I would function as a normal teen and grow into normal adulthood. Or so they thought.

Just months later, things were clearly not as they should be. My shoulder still hurt, as expected, but the pain was spreading throughout my entire arm. It was impossible to find relief. I was losing sensation and having trouble picking things up and holding onto them. Back to the specialist. I was diagnosed with a regional pain disorder.

Just months after that the pain began to spread again. This time into my neck and back. Doctors were sure it was still just the regional pain disorder and that we had nothing to worry about. But still it spread and still there was no relief. It was a year since the accident, I was going in for my knee surgery, my second year in high school, and clearly something was not right.

Fast forward another year, my knee surgeries are both done and I am almost completely healed. Yet, my shoulder still hurts and the pain has continued to spread. Now, I am suffering from pain in both arms, down my back, and into my hips. In addition to just pain, I begun experiencing odd sensations of someone touching me, skin sensitivities to light touch, migraines, digestive sensitivities, and more.

The Diagnosis

Back to the doctor. Thank God my pediatrician believed that there was something more going on and was supportive of the hunt. Specialist after specialist. Test after test. Not this, not that, not sure, its all in your head, try someone else...it was endless. Before being diagnosed with Fibromyalgia, I was diagnosed with Scoliosis, Irritable Bowl Syndrome, Lactose Intolerance, Raynauds Disease, and Chronic Fatigue Syndrome. But none of those explained the pain and skin sensitivities,

Finally, a Rhuematologist who not only believed what I said, but acted on it. She neither questioned me, nor asked for the relentless paperwork (that said nearly nothing anyways). She asked lots of questions, preformed a couple of tests, and prescribed a medication to help me sleep. After a couple of visits with her, I was told I had Fibromyalgia. She saw the symptoms and believed the consistency.

Luckily for me, she also believed that, being as young as I was, just seventeen, that medication was not something we should pursue at that time. You see, your body begins to build up immunities towards medications over time. The longer you take one medication, the less effective it becomes, and the higher dosage you have to take. Eventually, its not effective at all and you are forced to switch to another medication and start all over again. And, the best part is, there are only so many medications for Fibromyalgia on the market, and once you try them all, there is nothing left. When there is nothing left, and you never learned to self-manage the pain that you can, the pain feels worse than it would have before the medication (even at the same level)...and eventually, the pain will probably begin to get worse after that. So, we decided to not medicate for as long as possible. Now, six years later, I am still not medicating.

Life Since Then

Since then, I have learned to read my body, listen to what it is telling me, and to rest. I graduated high school, went to college, hold down a job, stay active with friends, travel, and live independently. I enjoy being outside hiking, horseback riding, camping, and more. I love to study and learn new things. I worked with special education high schoolers and am now a dog trainer. I have lived on my own for three years now. I am successful.

While life is not easy (heck, it isn't easy without Fibromyalgia), I have learned to cope.