Each week we are highlighting a different Chronic Illness Bloggers’ member as our ‘Blogger of the Week‘. As well as getting to know each other better, we hope that you enjoy this series and that you find the interviews with each member to be insightful and helpful.
This week our blogger of the week is Belle of Read Between the Lyme.
1. Tell us a little about yourself.
Hi there! I am a 46-year-old teacher, reader, writer, and coffee snob. My name is Ellen, but my husband’s nickname for me is Belle and so I go by that on my blog. Beginning in the fall of 2009, I began struggling with supposedly unknown illnesses. This went on for about 4 years. During this time, I saw all kinds of specialists and I was diagnosed with Hashimoto’s, Chronic Fatigue Syndrome, Fibromyalgia, Chronic EBV and depression. I was finally diagnosed with Lyme disease in March 2013.
Luckily, I found a doctor who tested me and luckily, I was CDC positive. I say I was lucky, not in that I actually have Lyme disease, but in the fact I tested CDC positive for Lyme. Many people out there do not test positive for Lyme due to the insensitivity of the lab tests and then go for years undiagnosed and suffering greatly. Some are never diagnosed and treated properly for Lyme disease. Instead, we carry other autoimmune diseases as our companions, such as MS, ALS, and Lupus. If I had accepted the other diagnoses that I was given before, I would be getting much worse and with added issues due to the undiagnosed Lyme Disease.
I have been an educator for 15 years and I am still working. Many days, it is a real struggle, but I am hoping I can keep my job while I heal. Most of all, I am hoping to grow as an individual through this life changing disease.
2. What is your blog called and how do you define your blog’s purpose?
My blog is titled Read Between the Lyme. This title came to me when I was really struggling to accept that my case of Lyme disease is chronic. Often Feeling like I was losing my true identity to this disease and all of its facets, I began to realize that there is still way more complexity to me and to my life than only this disease. Thus, Read Between the Lyme became my beacon for finding my true authentic self once again. While this blog began as a place to voice many things about Lyme disease and its effects, my purpose is evolving. Presently, the purpose is to hopefully educate, to support, to mentor and to inspire others facing the same or similar situations with chronic illness.
3. How long have you been blogging and why did you start?
I have been blogging for 3 years now. In the summer of 2014, after a year and a half of treatment for Lyme disease, I hit a wall both in my treatment and in my emotional state. That summer, I felt as though I was still nearly as sick as I was when starting treatment in early 2013, and so my doctor decided that the oral antibiotics were not hitting the bacteria hard enough. I had a Picc line inserted for weeks that summer. Luckily, I am a teacher, so I had the summer off which made dealing with this a bit easier. But, getting the Picc line was a turning point. No longer could I “pretend” that my case of Lyme would be “cured.” We were past that point. This was now considered a chronic case and the journey for remission began. This was a tough pill to swallow. I began blogging during that summer in between when I was dosing (this took about an hour), resting, dealing with
I began blogging during that summer in between when I was dosing (this took about an hour), resting, dealing with herxing, nurse visits, and bandage changes. You get the picture. Blogging wasn’t a release for me necessarily. It was at first a way to reconnect with myself. It was a way to distract me from the medication side effects, the line in my left arm, and the chaos of my emotions. Now, blogging has emerged for me as so many different things!
4. How often do you post? What made you decide to post on this schedule?
When I am working (I am a secondary teacher), I try my best to post once a week. Sometimes, I can post more and sometimes less. For instance, during the summer, I have the luxury of not working, and so I can definitely post more. However, sometimes my symptoms, especially neurological symptoms, determine my schedule more than anything. Again, my goal is always to post at the minimum, once a week.
5. Do you feel blogging has benefitted you? If so, how?
Blogging has been a great benefit to me. Not to sound cliche, but writing and sharing my experiences has given me an outlet for some things I find difficult expressing to family, friends and colleagues. Often times, I feel isolated from community and from others due to the challenges faced when having a chronic illness. Joining the blogging world had given me a place to make connections with a variety of different people across the globe! Making these kinds of connections with people who are also facing similar situations has been more wonderful then I ever could have imagined.
6. Why do you feel it’s important to blog about chronic illness?
Before this illness, I knew about chronic illnesses, but very little. I had no idea about the day to day obstacles involved, especially with illnesses that are “invisible.” While I am still learning, I really would like to add my voice to the collective and get information out there about what it is like for us.
7. What are your top 3 blogging tips for other bloggers?
I know others have said these things as well, so this is just more an agreement with the great wisdom already shared by skilled and more wise bloggers out there!
1. Write what you know – you have a unique perspective to share!
2. Support other bloggers. Make those connections! Not only does this boost your visibility, it feeds into the need for community and support we all desire.
3. Try and be as consistent as possible. Posting regularly helps your audience stay connected to you and for you to stay connected with your audience. I have learned that I don’t have to write a 1500 word blog every single time I post (and this can be very overwhelming expectations). Sometimes, I repost someone else’s work, an inspirational quote, a short blurb. These are just as important as a really long post! 🙂