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[griddlebandits]

High Fatigue Days

Hi there, folks. I’m still here. Working behind the scenes. Doing lots of resting. I get infusions every 4 weeks of a disease modifying drug called Tysabri. I figured out a long time ago that my energy slowly declines throughout those 4 weeks, and by that fourth week I’m often fatiguing pretty hard. I won’t tell you how many years it took me to come to that realization, but let’s just say my…

[griddlebandits]

Frogging projects

You guys. I’m so sad. I’ve been working on crocheting a tote bag a saw months ago on the Lion Brand Yarn website. The pattern said it was easy, but at several points throughout the pattern I was very unsure if I was doing it correctly. I finished the bag portion, all but the straps, and I knew it was wrong. I carefully compared it to the photo and it’s obvious to me that the straps were going on…

[griddlebandits]

I need a new driver

I made a note awhile back to write this post but felt stuck and left it hanging. I’ve been struggling to find my groove with writing lately. Today being the first of June, I set a goal for myself to write at least 30 minutes and run at least 2 miles a day for the entire month. Y’all, there are so many parallels between writing and running, it’s uncanny. Warming up is crucial to both. I haven’t…

[griddlebandits]

Big Toe Trouble

I’m sure I’ve mentioned here before that I’ve been having some pain in my right big toe. It’s been going on for about a year and a half, and I had first noticed it after I had (stupidly) run for 30 minutes barefoot on the treadmill. I read a book and it sounded interesting, okay? As a matter of fact, it felt awesome doing it. It was the following day when I first noticed the pain. I thought that…

[griddlebandits]

Running with Guides

A few months ago I signed up for a new-to-me 10k. The entire race event is set up to raise funds and awareness for pulmonary hypertension (PH) and multiple sclerosis (MS), and it offered multiple distance options. The name of the 10k distance was “Melinda’s 10k”, which is my full name so you know I just HAD to sign up. I did not look at the course map, and I had no friends who were running it but…

[griddlebandits]

Infusion Day

Today was my monthly infusion for Tysabri, the drug I take to manage my M.S. and ward off relapses. I don’t generally post about infusion days because they are typically uneventful so there isn’t much to talk about. Today was a little bit different. Today my nurse had the challenge of some uncooperative veins. I don’t know why this is a thing, and she couldn’t guess why either, but for the last…

[griddlebandits]

Struggle Bus

Hi there. I feel the need to share the purpose for this blog, my desires for the topics I cover. For a lot of the time it’s just been stream of consciousness, letting you into my dull days. I believe I’m done with that. God has healed me of a lot of things over the last couple years and it’s changing me from the inside out. I’m told by those closest to me I seem the same, but I don’t often…

[griddlebandits]

Real Talk

I know it’s been a while since I posted. I’m still writing almost every day, because it’s what I must do for my general sanity, but I haven’t felt a strong need for blogging. Well, that’s not true. This whole blog is pretty much my personal stream of consciousness, and I haven’t wanted to bore you with my thoughts lately. But I’m going to try to get back to it. I’m trying to work some consistency…

[griddlebandits]

Shall we chat about food and writing?

Well, I spoke too soon about the dysesthesia (the burning sensation) on my back. I had a day’s reprieve, but it returned today. So that was kind of disappointing, but it’s fine. It just requires some wardrobe adjustments and limiting my upper body movement until it settles down. No biggie. With my increase in energy I was able to make more meals at home this week! One of the downsides of my…

[griddlebandits]

Health Update (Warning: this is a long one)

I have great news. My fatigue levels have been going steadily down, my left leg has become way more responsive, and as of today, I am feeling zero nerve pain on my back! I can cautiously say I am back to my previous “normal”. I first noticed the energy levels coming back a few days ago. I had been walking around the house, originally for accomplishing only necessary tasks like using the restroom…

[griddlebandits]

Learning to sit in the dark

I recently read a book for book club called Learning to Walk in the Dark by Barbara Brown Taylor. Ever since, I’ve been thinking a lot about the dark, and my relationship to it. When I lost my vision and hearing I became very afraid of the dark. My limited field of vision leaves me wanting more. If I could just get more light in, maybe I could see the whole picture. With more light, maybe I could…

[griddlebandits]

Thinking about the spoon theory

Today I used up too many spoons folding laundry and fixing lunch, so I had to make the decision to stop part way through and cross some things off today’s to-do list. Spoons? What?! No, I’m not having a stroke. I’m referring to the Spoon Theory. I was trying to explain this Spoon Theory to my therapist this week, because she had never heard of it either. This article explains it much better than…

[griddlebandits]

This is a "Full Disclosure" post

I want to be clear here: I am not posting this to gather pity. I am posting this to inform you, my readers, that my life with M.S. is not all sunshine and roses, and I do have difficult days. I ask that as you read this, that you keep in mind those you may know who also suffer from M.S. or any other debilitating illness, whether it be physical or mental or a mixture of both. I tend to post a lot…

[griddlebandits]

Moving on...

Wow. I knew I hadn’t posted in awhile but I didn’t realize it’s been nearly two months. I’ve been okay, really. I’ve just been focusing on a lot of other things. And I’ve still been writing in some capacity all along, because I am still the ME who lives and breathes for writing. Writing seems to be one of those things that actually gives me energy. Mental energy mostly, not physically. The…

[griddlebandits]

I'm a Human Viewfinder

I stood in the aisle at Wal-mart, flooded by the harsh florescent lights above. Crafts to my left, kitchen goods to my right. I said to my sister, “Kari, I just have to say… I really hate not being able to see things.” And then the tears quickly started to fall from my eyes. She came over and wrapped an arm around me and said “I know. I mean, I don’t actually know, but I know how hard it is for…

[griddlebandits]

My nights are dark and silent

I had an odd experience this morning and used it for today’s writing practice. Enjoy! The bedroom is dark. I’ve just removed my eye mask and stood up from my bed. I slowly creep my way to the bathroom, like a drunken sailor, and look at my watch. It’s 4:24. I turn on the closet light and sit on the toilet. I don’t turn on the bathroom light because it’s too much light and I don’t want to leave…

[griddlebandits]

Thoughts about writing

I’ve been thinking a lot about writing lately. This isn’t new, of course. I’ve always thought a lot about writing. But while I was consumed (obsessed?) with training for the marathon, my writer brain took a little vacation. Now that the marathon training is over, and there are no races *officially* on my calendar, my writer brain has emerged its naggy head. Also, it’s December. This means my…