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 Sarah of Chronicles of an NF survivor.
1. Tell us a little about yourself.
I spent most of my life as a professional orchestra musician. I got bachelor’s and master’s degrees in orchestral performance; I play french horn. That was my entire identity, and I was proud of it (perhaps, inordinately proud).
When I moved to Israel in 1995 from Boston, I got a job in a symphony right away… again, inordinately proud of myself. Well, at least I could make a living and pay my bills in my new country.
When I got married in 1997, I had my first baby and became introduced to the world of natural child-birthing. I wanted to help every woman on the planet have a natural childbirth, and I was on a mission to facilitate that happening.
I trained and became a certified birth doula and added that to my busy schedule of rehearsals and performances with the orchestra. I had four babies and juggled that all with the orchestra, helping other women birth their babies, nursing each baby for at least a year, and taking care of every last detail of our family life. I felt I could do anything. A true Superwoman complex. Almost anything, that is.
My fourth birth was not natural, it had to be an emergency c-section. My body failed me for the first time ever. But, I was determined to incorporate this experience into making me a better, more empathetic doula, with more life experience under my belt, so to speak.
Then I got sick. Really, really sick. Within a few days, I was in a coma. I had gone through a small surgery to fix a hernia. It was a day procedure, I was home the same evening. Four days later, I was writhing in pain, and it was only getting worse. I could hardly move.
My husband wanted to take me to the ER, but I literally couldn’t move off my bed, so he called an ambulance. My friend came over to be with my four very small children when they woke up in the morning. To make a very long story short, I had the flesh-eating bacteria, and my body was shutting down. I had kidney failure, and my blood pressure bottomed out.
I was put into an induced coma on a respirator until my vitals came back up. After, radical surgery had to be performed to remove all the dead tissue and muscle that the bacteria left in its wake and antibiotics were loaded into my body 24/7 for many weeks.
Since then, I’ve had 9 surgeries, and more diseases as a result of my lowered immune system. I have been turned into a permanent patient, and can no longer work at any of my chosen careers. I have been on and off so many pain meds I could be a pain doctor myself. I weaned myself off of a very high dose of Fentanyl last year, over the course of 10 months. My last surgery was about a year ago, and it was successful… until recently when I have been feeling the pain creeping up again.
I have not only the constant chronic pain, but also chronic migraines that often make me have to be hospitalized because they make me faint, PTSD from the coma and other hospital experiences associated with it, Endometriosis, and osteoarthritis in both hips.
My work now is raising my kids. The illness was, as it usually is, a back-door-gift-in-disguise. I was way too busy before to treat my kids with the respect and patience they deserved, juggling two demanding careers,. I yelled at them a lot in those pre-sick days. It has been insanely difficult, with nanny’s in and out of my house like a revolving door when the kids were young because I couldn’t take care of them (could barely take care of myself…).
I see now, though, the benefits of being able to stay home and raise my kids. I’ve been a chronically-ill-stay-at-home-mom for 9 years. I miss my music, I still cry when I think about it or tell people about it. I feel I have so much to give as a musician, and as a doula, but I guess I am supposed to harness those creative and giving energies and bring them to my kids and loving husband.
2. What is your blog called and how do you define your blog’s purpose?
My blog is called “Chronicles of an NF survivor” (NF= Necrotizing Fasciitis, also known as the Flesh eating bacteria). It’s purpose? For me to get out the “hard stuff”, so I don’t burden my friends and husband. Many people find inspiration from reading it, as well. I write about my challenges and how I either succeed or fail in overcoming them.
3. How long have you been blogging and why did you start?
My blog is 9 years old! It consists of over 1000 posts. I’ve written pretty much weekly for that long. The blogging started on a website hosted by “CaringBridge”. My sister-in-law opened up that website in order to disseminate information when I was sick and everything was very scary.
After I got home, I took over the posts, and I spoke from the heart. I found it almost a need for my soul to write about what was going on. After a year of the CaringBridge journaling, I realized I was actually blogging, rather than just disseminating information, and decided then to open up a blog on a web host.
I found out about Blogger, and just-like-that, I opened up my new blog. That was 8 years ago. (I say that the blog is 9 years old because my blogging really began with the CaringBridge journal. But, the Blogspot site is 8 years old). In my blog, there is a link to the CaringBridge website, of all the posts from that first year.
4. How often do you post? What made you decide to post on this schedule?
I post once every week to 10 days. My soul decided on the schedule. I cannot rest, or sometimes breathe, it seems, until I write. If too long passes and I haven’t had time to write, I begin to really get stressed out in every aspect of my life. I write, and instantly I feel better.
In addition to my blog, I am also writing a book. Publishers who read my blog have shown interest. It is called “A pound of flesh, a piece of soul“, but it’s not done yet. I have very limited time.
5. Do you feel blogging has benefitted you? If so, how?
Oh yeah, in a big way. Like I said, it gets all the hard stuff (as well as good stuff, of course, but more of the hard stuff) out, and I appreciate knowing that my friends and loved ones are reading. Also, getting their support and feedback really helps.
I think I wouldn’t blog if I never got feedback. I thrive on it, I don’t want to just journal for myself. I need to know it’s all out there, and my “people” know what is really going on when they see me and I look good.
6. Why do you feel it’s important to blog about chronic illness?
It’s a vital form of support for so many people. Most people who have a chronic illness do not blog. Being sick and managing all the details of health care is a full-time job. The lessons we have, as people with chronic illness, are beautiful lessons with tremendous capability for healing.
The more we speak about what is going on behind the “looking normal”, the more people can have a deeper understanding of chronic illness. And understanding opens the door not only to wider awareness but to needed emotional and physical support from friends and loved ones.
7. What are your top 3 blogging tips for other bloggers?
1. Record those fleeting thoughts you have that you want to remember to write. Either vocally record them with a smartphone, or write them down somehow wherever you are.
2. Use Facebook and other social media networking to get your blog out there. Also use your blog address as a tag in all your emails. People will click on it, especially new contacts.
3. Write when the going gets tough. It’ll keep you above water and help not to fall into depression.