I'm Sarah! I love to read, write, and create. My blog is to share my passion for life while living with chronic pain. I hope you'll enjoy this journey and a good book with me!
I haven't had a chance to update my domain to match my blog name, yet, but I'm working on making it all come together!
Visiting from a search engine? New here? This is what you need to know:
I'm not doing well, health-wise, so I have not been updating or writing as much as I would like.
However, I am trying to write once or twice a week!
Also, if you have a problem with the Le Tote post that I wrote two years ago, I'm sorry. It's the Internet.
Most Popular Posts
2017 Reading Challenge
- Le Tote: A Very Honest Review
- Love Jane Austen? 10 More Books to Read!
- How to Deal with One Sided Friendships
- 9 Ways to Ease Your Cervical Dystonia Pain
- My Dogs Love this Amazing Alternative to Greenies
- 10 Ways to be an Amazing Friend to Chronically Ill People
- About Me
- Books Like Gone Girl: Recommendations
I had a doctor. I can't remember her name anymore. But I won't ever forget her. Every time I have to see a new doctor, I think about her. Every time that I have to make an appointment with the current doctor, I think about her. Sometimes I don't pick up the phone to make that appointment because I am thinking about her. My hesitancy to go to the doctor may seem like it doesn't make sense. I am very sick. When we pulled my insurance records last summer, I had averaged two doctors appointments a week for two years. That's not normal. However, I feel like the number would have been even higher if I wasn't haunted by that appointment. If I didn't cry in fear before I made appointments with new doctors, maybe I would have picked up the phone more. Or I wouldn't call my parents crying that I just didn't want to see another doctor. That maybe the symptoms would go away on their own. It seems irrational most of the time. Every doctor is not that doctor. But in my mind, every doctor is that doctor. I've never not gotten medical care in acute circumstances, but if I can help it, I don't go. I shouldn't be scared. But there's that doctor that I can't forget it. I was 23 years old. I was living in a big city all by myself. I had a whole bunch of weird symptoms that fell all over the map. Headaches, light sensitivity, bone pain, loss of range of motion in my neck, pain all over my body, and finally extreme fatigue. At 23 years old, I had a demanding job. It was when I started training for my first 5K that I knew something wasn't right. Over the next few months, my symptoms only got worse. Since I had so many symptoms, I called my primary care physician, who ran some blood tests. It was 8 AM, and I was on my way into the office when my cellphone rang. My primary care doctor was calling to break the news that I had lupus. I wasn't sure what lupus was, but I knew it was bad. I turned the car around and drove to the doctors office to pick up my medical records and test results. Then I made the fateful call to that doctor. To that rheumatologist. I went to see that doctor. I showed her my test results and she told me that I didn't have lupus. She pushed on some tender points and told me that I had fibromyalgia. She gave me the card of a pain specialist and left the room. Again, I was 23 years old. I didn't know what a pain specialist did. I knew I was in pain, but I didn't make that appointment. I just went home. A few weeks later, when I was still in excruciating pain all of the time, I called the doctors office back. I asked for an appointment while I was crying. The receptionist work me in for that afternoon. I showed up on time, parked in the parking garage, and took my spot in their waiting room. Oh, how I could tell you about all of the waiting rooms. Not long after sitting down, the nurse call me back to the exam room. The doctor walked in with an air of anger. I can't even remember what she said to me, but she left the room with the door open. I'll never know if she left it open on purpose or not, but since she did, I could hear her berating her nurse for calling me back before the person with the regularly scheduled appointment. I guess verbally assaulting her nurse wasn't good enough, because she came back into the exam room to do worse to me. She asked me if I had made the appointment with the pain specialist. I hadn't. I was in a lot of pain, not thinking clearly, and because I didn't know what a pain specialist was, it wasn't a top priority for me. I couldn't cook my own meals anymore and I could barely do my laundry, in fact, bathing was problematic. It was all I could do to make lean cuisines in the microwave and get to work. If you've ever been in a ton of pain, you'll know what I mean when I say that I could not think clearly. I had supportive parents, but they lived in Alabama and I lived in Northern Virginia. There was no one to help me with the practical parts of life. So, that doctor decided to take out her frustrations on me, I suppose. After yelling at me for not calling the pain specialist, she proceeded to pull at every joint in my body. I did not have joint pain. My joints were not inflamed. There was no need to pull on them. As she started pushing and pulling and yanking at major and minor joints, she continued to yell at me. She kept yelling that I had hypermobile joints, so that's why I was in pain. I yelled over her for her to stop. I was in tears because she was hurting me. Yes, I do have hypermobile joints, but I've had those my entire life. Over extending my hypermobile joints, like she was doing, was only adding to my pain. After she was done verbally and physically assaulting me, I had tears streaming down my face. I collected my things and went back to the parking garage. I won't ever forget the parking garage attendant, either. As I paid him for the privilege of parking at the doctors office, he made a comment about the look on my face. I was that upset, I suppose. He commented about how displeased I looked. I told him he was right, and that I would never be back. So, I ended up seeing that pain specialist. She gave me a bottle with 90 pills a Vicodin and no instructions. The plan must have been to keep me doped up to forget the pain. No one was interested in why I developed fibromyalgia at 23. I had to be my own healthcare advocate and do that for myself. I never took any of those pills. I was so scared. I remember finding them in the closet after I moved to the Charlotte area. They were woefully out of date, but I was still in pain. I took one.
I'll be honest. I got super thin during college. I loved it. But, all my meals were ready in the dining hall and social activities hardly ever involved food. I put on a few pounds after college, thanks to my microwaved meals, happy hours, and general exhaustion from living on my own for the first time. A year after graduating college, I decided it was time to get back to the gym. It was there that I realized that I am experiencing fatigue and pain that were not normal. After more trips to the doctor than I can count, blood tests, and x-rays, the final diagnoses came down. I had Spasmodic Torticollis, Fibromyalgia, and Chronic Fatigue Syndrome. The good news was that the Spasmodic Torticollis, also known as Cervical Dystonia (a neurological condition), could be controlled through regular shots of botox to my neck. The bad news was that no one was quite sure what to do with the Fibromyalgia or Chronic Fatigue. Long story--short--I packed on a few more pounds while I was sick. I got married and put on even more. Now that my neck and Fibromyalgia are under control, I've decided to take charge of my weight. My emotional eating is no longer an excuse. I want to be healthy and feel my best. Right now that means watching what I eat very carefully and adding more activity to my daily routine. I plan on using this blog to share the things that are working for me, as well as the things that aren't working! Currently, I am tracking my food with MyFitnessPal and using a Jawbone Up24 to monitor my food and activity. I am certainly not perfect in my execution of my plans, but it's been a little over a month and I have seen a lot of progress. The scale reads a lower number, my clothes fit better, and my endurance has increased. A small victory, but a victory nevertheless, was last week at work. There was a rush on the only working elevator after a conference on the first floor. My office on the fourth floor, was a lot of stairs away. I could have waited around on the first floor, but instead, I joined the mass of people taking the stairs. I reached the fourth floor barely out of breath! I attribute that to my commitment to take the stairs up and down at least twice a day everyday. I started by having to stop every floor, but my persistence has paid off!