Category Archives: Stories

Books, Stories

Book Recap: Hope Fights Back

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Hope Fights Back: Fifty Marathons and a Life or Death Race Against ALS by Amanda Lytle Peet and Meredith Atwood.

Against my strong Type A sensibilities, I’m going out of order with these books. The thing is, I finished this one and it was so good I just don’t want to forget it, so I’m jumping the line and posting it now. Last year I caught an interview with Amanda Lytle Peet and immediately added her memoir to my TBR (to be read) list. When it came available via audiobook, I snagged it right away and finished it within a matter of days.

Amanda’s story is one of incredible grace, courage, tenacity, and even humor. *After* she found out she had ALS, she set out to complete 50 marathons, one in each state. She cannot run due to the ALS, but she is still able to ride a recumbent trike, and she lobbied with race directors for permission to participate in all these races. Even on wheels, she was still only moving at a “back of the pack” pace like 13 minutes per mile, so that didn’t seem to be an issue for most race directors.

Even though Peet and I are living entirely different lives, I felt like her story held so many parallels to mine. She had to give up a successful career as her ALS was quickly progressing. She has a husband who takes care of her but does not coddle, and is walking with her in this journey arm in arm. She continues to push her limits and squeeze the most she can out of life. She does not wallow in pity at her circumstances. She’s become one of my heroes.

She had help writing the book (by co-author Meredith Atwood) but I don’t think that detracted from her voice shining through. I loved her sense of humor and snarky and stubborn attitude. In the bonus material she stated that in order to know what she thinks about something, she has to write it down, and that is me 100%. Same here, same. I think if we lived near each other, we would be great friends. I learned a lot about the ins and outs of her experience with ALS, and was encouraged and inspired in my own life to keep moving and challenging myself to fight against my own struggles with MS. It was a great book to read, and I rated it 5 out of 5 on Goodreads. I would purchase and reread this book without hesitation. Go check it out!!

Books, Stories

Book Recap – The Queen of Sugar Hill

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The Queen of Sugar Hill: A Novel of Hattie McDaniel by ReShonda Tate

I started reading this book a couple months ago, but didn’t finish in time for the digital book to be returned to the library. I picked it back up with the audio version recently because that’s what was available. I was able to find my place and pick up where I left off.

This was a work of fiction, but was based on true events. Hattie McDaniel was an actress in the early 1900’s, with the bulk of her work in the 30s and 40s. She was probably best known as the first African American actress to win an Oscar, for her role as Mammy in Gone with the Wind. She fought hard against segregation, and for equal rights for black Americans. I think the author succeeded at taking on the challenge of honoring Hattie’s McDaniel’s true accomplishments, while fictionalizing events along with the way. It made for a really fun and interesting read. I felt like I learned a lot more about history that I’ll retain. It wasn’t so much about collecting facts, but more about living McDaniel’s experience as a black actress struggling to not be pigeon-holed into stereotypical roles. Also, the audiobook portion I listened to was pretty outstanding.

I gave this book a 4 out of 5 on Goodreads. I would recommend it to anyone looking for a good fiction read with a healthy dose of history!

Books, Stories

Book Recap: Greenlights

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I love memoirs. I love getting that glimpse into other people’s lives. Especially when it’s a famous (and likeable) actor like Matthew McConaughey! So I was happy when the digital version of his book, Greenlights, became available from my local library.

The title is in reference to the moments in life when things just sort of work out for you, or give you a strong hint that you are headed in the “right” direction. I would not say McConaughey has had an easy life full of greenlights, but he’s definitely made the best with what he was given. His attitude towards life is overall positive, but with a healthy dose of pragmatism. He’s also lived a *very* interesting life, which kept me intrigued. The way he writes did get a bit intense at times, but I enjoyed reading it. He kept me laughing at times, and pondering at others. I highly recommend this book and I’d give it a 9 out of 10, just because some sections did require a lot of brain power and some of his poetry was visually difficult to read. All in all, a fun and thought-provoking read.

Family, Food, Photos, Stories

I made a pizza!

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You guys, I’m so proud of myself. Tonight I made a pizza from scratch. I know that doesn’t sound like a huge deal but for me it kind of is because I’ve been intimidated by any recipe involving yeast and historically have avoided having to touch flour. Cuz flour has always given me the heebie jeebies. Until the spring of 2020, when I had a miraculous moment on the shore of Lake Superior when I stepped into the sand and immediately said, to my utter shock, “this feels nice!” Ever since, sand and flour and sugar no longer bother me.

But back to the pizza. Nothing special, I put ham and onion on half and extra cheese on the other. It could use work, more sauce next time for sure, but the FamSquad agreed it was good and they would eat it again. I was surprised at how easy and inexpensive it was to make and will be sure to add it to our meal rotation. Next to tacos, pizza is my favorite food, so I’m definitely excited that I can whip one up easily whenever I’m craving it!

Look at this, isn’t it pretty?!

My first 100% homemade pizza
Domestic Engineer, Family, Food, Stories

Converting Thoughts

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Many years ago I had an epiphany about laundry. All the time, laundry. It always needed to be done and I used to grumble under my breath how much “I hate doing laundry”. And then one day I decided to stop saying that, and to replace it with, “I enjoy having my clothes folded and placed where they belong.” Every time I started to hear myself say I hate to do laundry, I would stop myself and replace it with why I liked it when it was done. I’m sure this bright idea did not just appear out of nowhere, it was probably from a podcast or a book. But it doesn’t matter, wherever it came from, it stuck with me.

Fast forward all these years later and I still have negative statements that need replacing. Cooking, for example. I have always said I hate cooking. I’m not good at it. I’m a terrible cook. But when I think more on it, none of that is really true. I may resemble Amelia Bedelia in the kitchen sometimes, but for the most part I can follow directions and make a decent dish. And I don’t really hate it. I just don’t like being rushed to put meals on the table. So over time, I’ve started trying to look at this differently. I do as much prep work ahead of time so that I don’t have to feel rushed putting a meal together. I take shortcuts when I can (although this is where my inner Amelia Bedelia shows herself). I’m growing more realistic about my energy levels and what I’m capable of doing, and I avoid those tasks that are not for me. And best of all? I thoroughly enjoy eating. Like, way more than I love having my clothes folded and put away. Food is awesome. And when I pull off a delicious dish? That’s just the best reward.

Converting these negative messages into positive ones has been a really slow process but I like what I’m left with. There’s a lot less tension in my shoulders and in my spirit and I sleep well at night. I *think* I’m less irritable around my family and quicker to let things roll off my back. I have courage to try new things, and my family – bless their hearts – are super gracious about it as long as I don’t throw too many new things at them at once.

Last week I had defrosted a bunch of chicken breasts and I divided it up to make stir fry but had two breasts left over so I found a recipe online – with a video! – showing me how easy it was to just season it, bake it, then slice it up to use in salads. So I did it, and it was so delicious I couldn’t believe I had made it. It felt silly but I was proud of myself. Anytime I can make something from scratch I feel like a boss. *Pats self on the back.*

Baking has always been easy for me. Cooking, not so much. Cooking has always been a bit intimidating but the more I succeed at new things the easier it gets. If I keep this up and get really good at it, they won’t just be saying at my funeral, “she made a really delicious cheesecake.” One can hope, anyway!

So I’m working on changing the way I think about my daily tasks, and I really think it’s helping. Waking up with a feeling of dread and overwhelm used to be a daily thing. It’s happening less and less these days. I’m starting to wake up and look at the day as an opportunity with wide open potential. What can I make today? What are the most important things that need to be done? How badly do I want that laundry put away? If it’s bothering me, I do something about it. Otherwise, I let it go.

Take the laundry for instance. No really, take the laundry! Just kidding, I’ll get to it this weekend. It’s been sitting long enough.

Deep thoughts, Disability, Domestic Engineer, Dreams, Food, Health, Kids, Marriage, Multiple Sclerosis, Parenting, Running, Stories, Writing

Velvet Hammers

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This morning I was up with the kids getting ready for school, as usual. I even stayed up after they left and worked on some grocery lists for my husband to pick up later in the week. By 10 I was exhausted so I ate a small something and went back to bed. Slept a solid 2 hours. Well, I woke up part way through but was so groggy and my legs felt like cement, so I went back to sleep for a bit longer. I had a dream where I was in an office, chatting with a coworker. She was talking about having been journaling, and how it turned into a blog post. At my request, she shared her blog with me and then I told her how much I missed writing. It was an oddly normal interaction. Usually my dreams are much stranger.

It’s true though. I miss writing. I also miss working, but not in the way I used to. Not anymore with the delusions that I will someday be able to work. Especially not after this latest wave of fatigue. This one hit hard on a Wednesday, eight days before my infusion. Have you ever heard the term, “velvet hammer”? I remember hearing it when I was young. My dad used to use it in reference to the effects of Nyquil. It’s a soft but effective blow that knocks you on your feet and prevents you from getting up. That’s the way fatigue has been acting this past week. It hits, knocks me out for awhile, I sleep, I get up and do necessary things super slowly, and then it hits again. Thankfully it hasn’t been constant, but it’s frustratingly unpredictable. This is a reminder to myself that I cannot hold a job. I can’t be counted on for much. Every commitment is always a maybe with me. My family counts on me for food and clean towels, but not a whole lot more. They can see when I’m fatiguing and hold back on the requests. I’m thankful for that.

We hosted Easter dinner yesterday for my in-laws and I was so grateful to be able to have them in my home and to feed them a delicious meal, but I’m paying for it today. It’s the price of living life.

The thing is, I do recognize I have choices. I could choose to say no to all the social functions, and I sometimes do. I can say no to the dinners with friends and family, weekly prayer and Bible studies and then I would likely not have such debilitating fatigue. But I don’t want to miss out on living my life. I don’t want to miss out on interactions with my friends and family. So if this is the price I have to pay, so be it. I’ll ride this horrific roller coaster and suffer the lows to experience the highs.

An email came through this morning from an MS newsletter asking “what is your biggest hurdle?” Fatigue. Hands down, fatigue is my biggest hurdle. All the other damage MS has caused? Vision loss, hearing loss, cognitive dysfunction. I can deal with that, I can still find a way to be me. The fatigue, however, takes me out of my body and mind and leaves me a shell of who I was. Hate is a strong word but it applies here. I hate what fatigue takes away from me. The ability to do the things I want to do. Care for my family, laugh with my friends, write for my soul. It’s as if I’m in a waking coma. When I was super sick in 2013 and sleeping 20 hours a day? It didn’t really bother me because I wasn’t conscious. It was everyone around me whose hearts were breaking. But with fatigue, I am fully aware that life is happening all around me, and I’m unable to be a part of it. That’s hard, folks.

I realize this post is dark. It definitely took a turn, and I don’t want to bring you down. But this is my blog, after all, so if you can’t deal, feel free to move along. It’s fine. I won’t be hurt. I think I’m just trying to get back to authentic writing and this felt like something worth sharing. From journal to blog. Weird, I know, but it worked for the lady in my dream. The whole point of my blog is to give you a glimpse of my life with M.S. (and running, which is kind of still happening, more on that another time) and the real truth is that I have bad days but I also have good days, and I’ll try to keep talking about both. MS has altered my life 180 degrees from where I thought it would be, but I’ve been able to find joy and strength in so many unexpected ways. So stay tuned, if you dare, and I hope to share more of those things too. Soon. But for now, I might go back for nap #2…

Cochlear implant, Exercise, Family, Food, Health, Kids, Photos, Running, Stories

Goals, and a bit of honesty

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So. For the month of March I had attempted to go without sugar. The processed stuff of course; I did not abstain from eating fruit. Girl needs her fiber, you know? I made it 3 weeks, and here’s why. It really didn’t seem to make that big of a difference! I had been warned that I would go through a brief period of withdrawal, headaches, mood swings, etc. I had none of that. I expected to lose some weight. That didn’t happen either. My conclusion? Maybe I don’t really eat that much sugar. So after 3 weeks of this mild deprivation, I gave up the experiment. And again, nothing really changed. The only thing I really learned is to be more aware of what foods contain added sugars and how much. And I will continue to try and avoid those things as much as possible, but I don’t think I’ll go completely cold turkey again. I love donuts too much.

My new goal, for the month of April, is to complete some sort of exercise every single day. I’m 5 days in, and I’ve only missed one day, but I got right back on track the next day. This missed day was Friday. I just couldn’t will myself to do anything, I was so tired. However, upon reflection I realized the reason I was so tired was because on Thursday I went for a run during the day, and that night I went swing dancing and then to karaoke. So couple a late night with two forms of exercise, and I think I earned that pass for Friday. It’s my game, so I’m going to allow it. Moving on.

Today I ran two miles to the convenience store to buy myself a belated birthday donut (my birthday was in March, the no sugar month, which in hindsight was not very well thought out). While on the way I decided I would also buy donuts for my kids and then just walk the 2 miles back. I did not feel like running while holding a bag of donuts. So I completed 4 miles, half running, half walking. Decent workout. My legs will thank me tomorrow. And the kids were pleasantly surprised about the treats.

So, I need to be real honest here. I went most of the winter without much running. I didn’t do much strength training either. However, I have been slowly starting to get back to the gym for strength training, and I occasionally get out there for a run. Michigan has really been struggling to let spring in, because even when the temps are reasonable, the wind brings them right back down. One, I don’t like wind because my cochlear implants make it extremely loud and that’s just annoying. Two, it’s cold man!! Running helps my body warm up in most places, but my face and fingers and toes still end up chilled to the bone and it just makes me grumpy. It does not make for enjoyable running. Of course, I’m still grateful to be able to run but I seem to remember having more joy with it, and I can’t seem to find that yet. I need a race on my calendar to get excited about. I’m working on it. All my runs have been short, 2-3 miles, and that doesn’t really get me out of my neighborhood. I want to be free! I want to explore the trails! Get me away from the road, I want to run by some people walking their adorable dogs! I’m reminiscing my marathon training days, and longing for that feeling again. Not that I have plans to run another marathon anytime soon. A half, maybe. We’ll see. I definitely want to do more 5ks and 10ks, but only if they involve fun swag. I’ll never win these races, and I can run at home for free, so good swag is a must for me.

So yeah, goals. Limiting sugar and exercising regularly are two things I’ve really been working at to keep myself as healthy as possible. It’s what I’ve gotta do to fight disease progression, and I think it’s going pretty well. Most days I feel pretty good. I still tire super quickly and take a long time to recover, but at least I’m having those moments where I’m able to be more present with the people I love. These are good things. While I’ll never say I’m thankful to have M.S., I’m always grateful for what I’ve learned from the challenges it throws at me every day.

Anxiety, Books, Disability, Health, Low vision, Multiple Sclerosis, Stories

Moving Forward

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It’s day three of this debilitating fatigue, and I’ve been managing okay. I’m doing the bare minimum, the most essential tasks. It is strange timing, because my monthly infusion was last Friday. My energy levels should be going up, not down. There’s a little bit of hope on the horizon however. I talked to my therapist yesterday and I think we uncovered some of the factors that could be contributing to this.

Factor #1: we are having a string of below freezing temperatures here in Michigan. I’m wearing multiple layers in the house just to stay comfortable, but I think it still zaps me of energy.

Factor #2: I’ve not been running or otherwise exercising regularly for awhile. That was intentional, after I declared it hibernation season for myself.

Factor #3: I wasn’t taking my medicine and vitamins over the Christmas break. I had no routine so I had just sort of forgotten about it. None of these meds are super crucial, and I often miss a day here and there with no issue. But a whole two weeks or more? I guess it caught up to me. So I’m back on that wagon as of yesterday, and hopefully my energy comes back to functional levels. One of the prescriptions I take is Vitamin D2, which is super important for us with MS, and especially during these winter months when sunlight is in short supply, So it was a rookie move for me to not be taking that. Slap on the wrist, won’t let it happen again. Moving on!

I got some good news recently, and that’s that I was approved for O&M training through the State of Michigan. Orientation and mobility training is something I didn’t know much about until I started looking more into using a white cane in public and unfamiliar environments. Because as I may have mentioned before, in new spaces I get *super* freaked out not being able to see and recognize what’s around me. I get so fearful it’s like my physical and mental world just shrink so that I’m in this invisible bubble. I walk slowly, staring at the ground, looking up every few steps to study my immediate surroundings. It’s a very lonely feeling. I hide it well, I think, but I got tired of feeling that anxiety. Even worse, I think I avoid going out in the world in order to avoid it, and I’m tired of that too. So after meeting with a coordinator from the State I am really hopeful that this program can help me. I think I’ve become so accustomed to the struggle, and I’m looking forward to learning how I can manage better and feel more confident out in public. Yay for me being my own advocate, right? This was a very difficult decision to make, to be sure.

That is all for now, folks. I do have some book reports rolling around in my head that I hope to get hammered out in the next couple of days (weeks?) but we’ll see. Until then, stay warm my friends.