Remember when I said my RA was under ‘good control’ and I was trying to navigate a new me with limitations? That only lasted a couple of months before they lumped on another diagnosis. This one I at least saw coming. Well, I kind of saw it stealthily peeking out from the corner of that hastily built wall I told you about before. Fibromyalgia with Chronic Myofascial Pain. (Say that 10 times fast, I dare you!)
So, this time I did what any person with internet access does… I hit up my good friend Google to see what people had to say about Fibro; living with it, working with it, parenting with it. You name it and I googled ________ with Fibromyalgia or ________ with Chronic Myofascial Pain. Hundreds of pages and opinions. Everything from just give up and know you can’t do things anymore, to it’s all in your head and you just have to push through it. There are soooooo many pages dedicated to that disease. But none of them really spoke to me and none of them really gave a lot of insights into what I was going through specifically.
At my next check-up with my Rheumatologist he suggested a book. Fibromyalgia & Chronic Myofascial Pain: A Survival Manual authored by: Devin Starlanyl and Mary Ellen Copeland. (Click here to find the book!) The book read more like a medical textbook/manual than one of my favorite Jane Austen novels, but gave me so much knowledge on the how and why behind my new daily companion, chronic pain. In a section titled: Wellness Recovery Action Planning they cover triggers and warning signs which was a huge piece of my puzzle I had been missing. Understanding not only what I’d been diagnosed with but what I could do to minimize the triggers, identify warning signs and try my best to pace myself so I don’t end up in a flare. (Mind Blown… HA) If you haven’t read their manual I would highly suggest it. It covers such a large amount of valuable content that it should really be a must read for all Fibromyalgia patients.
MUCH later in my journey I found another practitioner (whom I can’t wait to tell you about!) and she told me about another absolutely amazing book called The Fibro Manual By: Ginevra Liptan, M.D.. (Click here to find the book!) This book reads much more like a user friendly, helpful, practical book for all Fibro patients. Dr. Liptan goes through her own personal journey and then gives such amazing insights that even though I’d already had the diagnosis for almost 2 years when I read her book I was still so thankful I’d been told about it I read and highlighted it to DEATH. Why? Because I am a wife and a mother and I didn’t and still don’t have time to be sick! Anything I can read/do/try to help improve my quality of life directly correlates to the quality of life for my family which is my motivation for fighting and continuing on my journey to wellness. One of my favorite parts is when she talks about other doctors around her not believing Fibro to be a legitimate diagnosis. I have run into this SO MANY TIMES, have you? A doctor says things to you like,”Fibromyalgia is really just a syndrome or a list of symptoms if you will. It’s not an actual medical diagnosis but more of a we don’t know what’s wrong with you, so well label you with FMS.” I actually had a cardiologist tell me that exact thing and I wanted to scream. It’s so frustrating. But then, thankfully there are those who actually get it and know how to help treat it.
So I told you there were then two and five… I was up to two diagnoses and overnight we went from 3 children to 5 children. We had become foster parents and in addition to our three wonderful children, we had added two more; a newborn and a 7 year old sibling set. We had some supporters and some who felt that I shouldn’t be taking on more when my body was clearly waging war against me. But, when you’re called…. YOU ARE CALLED and that my friends is that. There’s no running from your calling in life. So, a new journey as a wife, foster parent/mom of 5, 40-60h worker bee and chronic illness patient began.