A Note From My Brother

I asked my older brother to write what it was like to live with a loved one that has Fibromyalgia. These are his words.

——————–

My sister has Fibromyalgia. And it sucks. Big time. Up until three years ago, I didn’t really grasp how much suck my sister was going through. I had only a shaky concept of what Fibro was. My ex’s mom dealt with it, and it was obviously a nuisance, but she seemed OK for the most part. It was only in the time I spent living back home that I truly realized what a hell my sister had been going through. Continue reading

The Frozen Butterfly Moment

I am struggling with what I refer to as “partial paralysis” today. While standing in my bedroom in the early part of the afternoon, my right leg suddenly and without warning turned into a dead weight on me. I couldn’t move it. Any of it. At all. From hip to toes, my leg was locked up solid. With only my left leg and my cane to support my weight, I collapsed into my dresser that, thankfully, happened to be right in front of me. My right leg however, stayed put behind the rest of me, and it wasn’t until my father picked it up and moved it, was it back under my body where it belonged. I burst into tears and clung to my dresser. I could still feel my leg, but it was a different and odd feeling sensation mix of numbness, deep burning, and rigidness. I knew it was still there. Moving it however, no matter how hard I tried or how badly I wanted to, wasn’t happening on my own. Once again, I was dependent upon another person to help me function. Continue reading

No No Fibro on Pinterest

I have a Pinterest account and on it I have a board called “Girl Interrupted”. I started it a few years ago on a whim. This was long before “No No Fibro” existed. In the beginning it was just a place for me to express how living with Fibro made me feel. But, somewhere along the way, it evolved into a place that keeps me going. Continue reading

Standing At A Crossroad

Today I find that I am standing at a crossroad. I have been here before. Actually, I came to it years ago and out of fear, I have just stood still and ignored the road entirely thinking that if I did so, another and better option would come about. It hasn’t. So here I am. Again. Still. Forcing myself to face the unfaceable. Do I or don’t I apply for disability? Continue reading

Pantsing It

Tonight, I had a total meltdown over all of the things missing from my life due to being a Fibro Fighter. It wasn’t like a three-year-old on the floor in the middle of the store turning purple and reaching a volume level that only firetruck sirens can compete with, kind of meltdown. Not on the outside anyway. Outside it was a controlled version of frustration, anger and tears that I quickly put an end to. My inner thoughts though… yeah, they were right there on the floor like a toddler. Continue reading

Pill Box Night

Once a week I have to pull out my pill box and refill all of my medications for the week. I procrastinate on it every week. Right now, it is 11:45pm and long after my regular bedtime and I still haven’t done it. I am only awake now because I need to do it. What’s the big deal? Well, the big deal is that the pill box has twenty eight separate compartments in it and I have to fill it up with a grand total of 160 pills that I need to take throughout the week. That is right, by the way. I just counted them. 160 pills every week. Continue reading

A Conversation

My friend Ryan texted me the other day to ask some questions about Designing Hope. It was a really good conversation that I feel explained a lot, so I wanted to share it. All personal information has been removed for his privacy and for mine. Continue reading

The Beginning

I remember the moment I realized something might be wrong. I was on a road trip with my parents to go visit family in another state. I had been sitting in the back seat of the car for about four hours when we decided to make a pit stop for gas and snacks. I got of the car and I remember feeling so very stiff. I decided to try to stretch it out. Having made this trip before, I had a few routine stretches that I liked to do. Touching my toes, twisting at the waist, extending my arms, calf stretches, etc. They always made me feel better. Only that time, I couldn’t bend over to touch my toes. I couldn’t even get half way down my legs. At the time I remember laughing about it with my mom. We joked about how I was just getting old and needed to exercise more. But in my head I was thinking “Huh, that’s not right. Why can’t I do this? Why does it hurt when I try?” Continue reading