August 11, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

I think it’s important to have goals in life. Having something to work towards can be very motivating. I also think it’s important to dream big. Who cares if it seems impossible? It’s still fun to fantasize about things. I often find myself thinking about upgrades that I’d love to do to my home. I know they can be far-fetched and basically impossible, but it’s still fun to dream. I think it’s important to dream about life in general too. I know that I have physical limitations, but I can dream about when I’m cured. I don’t know what “cured” really means for me, but in my daydreams, I’m more able-bodied than I’ve ever been in my entire life. When that happens, I want to travel. Of course, I will have won a mini lottery too, so I don’t have to worry about working right away, giving me the resources I need to get settled in my new life.

I have two dream jobs. When I was visiting Sanibel, Florida, we went on a dolphin sunset cruise. The boat sped up, and the dolphins were jumping and swimming along in the wake. I cried the entire time because I couldn’t believe I had been blessed to witness these beautiful beings in the wild. It was incredible. Ever since then, I thought that would be one of the most amazing jobs in the world. I love being on the water, and I love watching dolphins, so could it get any better? Why, yes, yes, it could.

Did you know that in China they have panda nurseries and people are panda nannies?? I had no idea that was a thing. I don’t know if you have to be a citizen to work there or not, but in my fairytale world I would be hired and I would be hanging out with baby pandas all day. They are mischievous little bundles of joy. I feel like it would be like watching a room full of one-year-olds, super chaotic but so much fun. With my new body I’d be chasing them, rounding them up, cleaning up after them, and laughing at their rebellious behavior. I’ve loved pandas since I was young; they truly fascinate me. I watch an embarrassingly amount of panda videos on Facebook and Instagram, and I don’t know how they make it in the wild. They are constantly falling out of trees and rolling down hills. They must have very malleable bones with the tumbles they take. Every being has a meaning in life, and I think the main role for a panda is to spread joy. Can you honestly look at one and not smile? I know I can’t.

When I was little, I dreamt of being a princess, a mom, and a teacher. I think I wanted to be a cardiologist at one point too. People ask kids what they want to be when they grow up, and their answers range from practical to enormously imaginative. Why do we stop thinking so big when we grow up? Sure, the reality of bills, work, life, and every other thing fills us up, but it seems a lot of our imaginations stop, mine included. I’m working really hard to keep my imagination open. Being around all my littles does help with that because I can be silly with them. With the world being so scary and heavy right now, I think an escape every now and then sounds nice. I’m going to continue to fantasize about the future, be silly, and use my imagination when I can. This week, I’m challenging myself to do something silly or imaginative every day to see if it changes my outlook and reconnects me to my childhood self. I invite you to join me. I’d love to hear how it goes. Wishing you a week of big dreams and silly fun!

(Pictured is me on the dolphin sunset cruise and a picture of a baby panda from a google search because they are just too cute!)

August 4, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

I love kids. I think they are the sweetest little humans. I am blessed to know many little ones. Every time I am around them, my heart becomes reenergized giving me strength to keep pushing forward in this troubled world.

Last weekend while camping, it was very hot outside so we came into my house for a cool off and I asked two of my little buddies if they would paint something on my bathroom walls. I’ve been wanting to change my bathroom and I decided that I want everyone who comes over to add their stamp making my bathroom one of a kind. Well these girls understood the assignment and they did not disappoint! They are eight and six. I took them into the bathroom and I asked them if they would paint a picture on the wall and explained that it could be anything they wanted. The six year old said “I’m going to draw a rose. Wait, I don’t know how to draw a rose.” That tickled me. They each took a paintbrush and got to work. I wanted to watch the process but I also wanted to be surprised at what they created. I went out to the kitchen to tell my mom and their dad the rose story and waited until they were done. I went into the bathroom and I melted all over the floor. They did such a good job! I think they thought it was pretty cool to paint on the wall. Now, whenever I go in there, I can’t help but smile. It’s so precious and it means so much to me. I’m excited to watch it grow with more people adding to it.

Yesterday, I got to visit with a one and a half year old. He melts me too. He doesn’t like to sit still much these days so he doesn’t sit on my lap often. He was running around giggling and being adorable. He discovered the foot plate on my wheelchair and stepped up on it. He grabbed my thumbs to help him balance and then he laid his head on my lap. OH MY GOSH!!!! I’m pretty sure my heart grew three sizes bigger in that moment. He has held a special place in my heart since day one but every time I see him, he digs in further and further.

My last story for the day is about a little girl who is now eight but when this happened she was six. My dad has mobility problems because of knee pain  and neuropathy so he uses a walker to help keep him steady. She was helping us get things out of the fridge for dinner. She was handing things to my dad and he would put them on the counter. She got to a glass jar of pickles and started to hand them to him but then stood up and said “I don’t feel good about this Grandpa” and carried the pickles to the counter herself. I’ve laughed about that for two years and I often find myself saying “I don’t feel good about this Grandpa” to my dad.

It amuses the heck out of me how smart, intuitive, sweet and innocent kids are. They are so pure and I wish adults would take a lesson from kids. They don’t judge, aren’t prejudice, they are inclusive, they share (mostly lol), they are curious, they are willing to listen and learn and they love without question. Kids don’t care how much money someone makes. They don’t hate people that are different, that’s something that is learned. I think I finally found the answer to what I want to be when I grow up. I want to be a little kid. I think we could all benefit from being more like little kids. As an added bonus, we could get nap time again!

(Pictured are the art projects on my bathroom walls.)

July 28, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Today I’m going to share a major life update. I have decided that standing up just isn’t for me anymore. When I did stand up, I was hunched over a tall kitchen chair using my arms for support. I haven’t stood up straight for many years. This progression has been slow but I knew I’d get here one day, I just wasn’t expecting it so soon. If I hadn’t gotten so sick earlier this year I probably wouldn’t be having this conversation right now but that took a lot out of me. It took a long time for me to get healthy, it took a lot of my strength and my confidence. I really tried with physical and occupational therapy but it was not the same as before I was sick. My legs trembled and my anxiety went up praying that I wouldn’t fall. Instead of hiding my struggles and fears, like I have in the past, I’m trying to break that cycle and be honest with myself and those around me. Instead of risking a fall and breaking bones, I’m choosing to listen to my body and do what’s right for me. Like I said, I knew this day would come, but I thought I’d be sad and mourning the loss of yet another thing that LGMD has taken from me. Actually, I feel relieved. I feel safe. I feel that this is right for me.

This past weekend, my family came over to camp in my backyard. I recently got a portable Hoyer lift and we took it to the backyard and used it to put me in a lawn chair. It has been close to twenty years since I’ve sat in a chair like that. It was nice to be like everyone else there. With my wheelchair rolled out of sight, it almost felt like I didn’t have LGMD for a bit. The kids and a few adults were playing with water guns and I was able to participate instead of watching from afar keeping my wheelchair safe. I was SOAKED, just the way I wanted to be. It was so fun participating and not just watching. It had been a long time and that feeling of normalcy was not lost on me. I treasured every drop of water sprayed on me and the laughter that came with it.

Yes, my world is changing by not standing, but it’s also changing in other ways. I may have lost the use of my legs but I’m also feeling more empowered that I can do things like sit in a lawn chair. I wouldn’t have done that by standing up, the unevenness of the ground would have made me too scared. The good and the bad will always be intertwined, I’m going to try and focus on the good so the bad won’t be so bad.

July 14, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

It’s 1:20 am and I have no inspiration for this week’s MMM. I have been sitting here for two hours and I’ve deleted everything that I started. I decided that this week I’m going to write about my high and my low from last week.

Let’s get the low out of the way. Between humidity and the smoke from the Canadian wildfires I had to miss out on two activities this week. I know there are a lot of people with breathing sensitivities that can relate and you know what, it sucks. Struggling to breathe is one of the scariest feelings and for me. When I do struggle, I have a hard time staying calm, which makes matters worse, I know. That panic makes me tighten up and restricts my lungs even more causing me to take quick rapid breaths instead of long soothing breaths. Using my nebulizer or emergency inhaler helps open my lungs. However, focusing on someone talking or playing a word scramble game helps me shift my attention away from my breathing, allowing me to naturally resume my normal breathing pattern. When it’s really bad, a nice soft arm tickle always helps me to relax as well. 😆

It makes me sad when I have to miss events that I committed to. I want to be reliable to others. I know they all understood my circumstances but I hate that I had to give in, yet again, to this stupid disease. I hate that it’s not only affecting me, it ripples out to my loved ones as well. I hate that there isn’t anything I can do to change it. I can’t control the weather or the smoke from the wildfires. I can’t control how my lungs will be affected. I get overwhelmed by the things that I can’t do for others or for myself. I doubt myself a lot. I have found self love, but I still struggle with needing so much from others. I would like to find a partner in life, but if I’m being honest, I self sabotage. When I do connect with another human, I find that I’m ending it before getting hurt because I feel like I’m too much to take on and they are going to walk away eventually. I guess the saying is no risk, no reward but holy smokes, I don’t know if my heart fully healed after the last time it was shattered.

I feel that recently I haven’t been making choices that align with my best interests and that’s something I need to work on. I try to remind myself that I don’t need to change to fit into someone else’s ideas of who or what I need to be. I have been silencing myself to make others more comfortable and to fit their needs. Light bulb moment, I am deserving of love the way I am. I don’t need to change or repress what’s important to me in order for someone to truly love me. My needs are important too, I need to work on remembering that one as well. Self work is hard. I’ve done a lot of it to get to where I am today but it’s pretty obvious to me tonight that I have a lot further to go.

How in the world did this get so deep and so off course? I guess a middle of the night rant is what I needed. I’m still stumped as to how I went from breathing issues to relationships to some pretty big self discoveries, but here we are.

As for my high of the week, there are many to choose from and I am thankful for that. One of my highs was craft day with my mom, my dad, my cousin, her daughter and her granddaughter. My little cousin, who is eleven, decided on the craft for this week. We all gathered around my kitchen table with a blank canvas in front of us. We each had two different paint colors and a paintbrush. We had two minutes to paint something on our canvas. At the end of those two minutes, we passed our canvas to the person on our left and reset the timer. We repeated this process until we had our original canvas back in front of us again. What I found really awesome about this project was we all were a part of each other’s painting. And as my little cousin pointed out, all of our paintings were created with the same twelve colors. They were all VERY different yet they were all connected. It made me reflect on all of us surrounding the table. We are all VERY different from each other yet we are all connected by love, not just genetics. I look forward to our craft days because I know it will be a time filled with laughter and a whole lotta love, making it an easy high of my week.

I hope your highs are high and your lows are minimal this week. Thank you for listening and helping me on my journey. Lots of love to you all.

(Pictured are the six of us around the kitchen table with our blank canvases.)

July 7, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

My dear friend, Sara, approached me with a graphic she found on the Facebook page “A day in the life of a person with disabilities”.  It showed how different thoughts took up the brain. We discussed what ours would look like and Sara made a diagram, which is the photo I shared on this post. So let’s talk about it.

The biggest portion, what if something happens to my caregiver? This is a huge question for people with disabilities. I have four caregivers and without them I wouldn’t be able to stay in my home. I have very high anxiety about this. Without a caregiver I can’t get out of bed, go to the bathroom, or shower. I can’t turn on my oxygen machine and some days I can’t use my nebulizer on my own. I would be forced to go to a facility which are understaffed and who knows where I would find an opening. This is a real fear of mine.

Next, how much pain will I be in today? This is something many can relate to I’m sure. For some, the pain is too much to even get out of bed.  Luckily for me I’m not usually in a lot of pain. I’m very thankful for that. Another side to that question is, if I do X Y or Z how much pain will that cost me? It’s frustrating for me to have to budget my energy so I can make it through the day. Also, knowing if I overdo it, the next day will be spent in bed.

Keep lying and say you’re fine, tired of being strong, I am not a burden all are connected for me. Sometimes it’s just easier to say that I’m fine, even if I’m not because I don’t want to be a burden but it’s hard to be strong all of the time. Feeling like a burden is a different kind of guilt for me. I truly believe that asking for help is a strength not a weakness, but when I see sacrifices being made because of me, I sometimes do feel like a burden.

Medicine can be a very painful subject. Many people can’t afford their medications. Some have awful side effects and some make you not yourself. Luckily I have access to all of my medication needs. I wish everyone could say that. And then there is the effort needed to remember to take them!

How will I pay for this? I have a strict monthly budget, like many people, so when surprise expenses come up it’s a big stress. Even the non-surprise expenses can weigh a person down. I read that people need two thousand dollars a month to live; if your Social Security is less than that, how are you expected to make ends meet? There are other situations too where people are struggling. It’s hard knowing people are having to choose between food and things like medication to survive.

The thing that was nearest and dearest to my heart and Sara’s heart was not being able to participate and not showing up for others. This is a hard one. That’s why it’s in its own heart bubble. It’s hard watching and not doing. It’s hard missing out completely because you physically, mentally, or emotionally can’t. I have shed many tears after saying I can’t be there for my loved ones even if it’s because it’s not accessible. That’s something I can’t control but it still makes me feel awful.

All of these things fill our mind on top of everything else. The stress of the world, everyday living, family and friends, self care, work, school, pets, kids, hopes and dreams, fears, the future, the past, and whatever else might fill your mind. I understand everyone has struggles others don’t see and probably have no idea about. I think this is a good visualization and a way to open the conversation. I am thankful Sara brought this to me because it definitely makes me feel not so alone in my thoughts. I think we could all benefit from sharing what’s weigh us down because when you have a friend like I do in Sara, the load is a little lighter.

June 30, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

What is love? According to Google it’s “a complex emotion encompassing a range of feelings like affection, fondness, and deep attachment.” That’s very generic. Love is such a huge part of life. Look at movies, songs, and books, love is the theme of so many of them. Love lost, love wanted, happy in love, longing for love, love of family, love of pets, love of friends, love of children. Love is so complex and powerful. It can make you feel the best you’ve ever felt and the worst you’ve ever felt. Love has made me feel on top of the world but it has also made me feel like I wanted to die. Love is also healing. Love brought me back from those feelings of wanting to die.

I sometimes throw the word love around loosely like I love this song or I love pizza but to me it doesn’t lose its power. I do have a genuine love of music (and pizza) but of course it’s not the same as I love my family. Although some days I like music and pizza more than my family . One of the toughest loves for me to learn was love for myself. I think watching my mom learn to love herself has helped lead me on my path of self love. Even as an adult, I’m always learning from her. I do love myself and my body. My body may not be perfect, but neither am I. My body has supported me my whole life. My arms have given lots of hugs, made meals for others, and held a lot of babies. My hands have held the hands of those who are hurting, celebrated with high fives on joyous accomplishments and have helped me find my passion in writing. My body shows up for me every day. I owe my body all of my gratitude and love. She’s not perfect but she is mine.

I’m not sure how this idea of perfection has become so skewed. The people I see on television and movies are using medicine that they don’t need to try and achieve the perfect body. Who gets to decide what’s “perfect?” Why does the size of someone’s body determine their value or their importance? Personally, the weight of being perfect is too much. No one can achieve that. I wish we could focus more on people’s abilities than their appearances. I’m guilty of this myself. I have judged people on their appearance before getting to know them. That’s very unfair of me and it’s something I am working on. I am also working on spreading more love. A smile, a hello, or a compliment can turn someone’s day around. I am challenging myself to spread more love this week, I invite you to join me. We don’t know the struggles others are facing, a little kindness can go a long way. With so much hate in the world, I’m going to do my best to outshine that hate with love, I hope you try too.

(I took this picture at Bentleyville Tour of Lights in Duluth, MN.)

June 23, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

I think everyone can relate to grieving a past version of yourself. I’ve heard many people say things like “I can’t do things like I used to,” so it’s not just a disability thing. As people age, abilities change. When I watch my little cousin dance gracefully and do the splits and flips it makes me think, oh to be young again. There are many reasons I wish I could be younger again, not just because I was thinner and had more abilities but I wish I would have been nicer to myself. I also miss my independence. If you’ve read my book, you know I struggled with poor self esteem before my diagnosis of LGMD. I’ve gained perspective and I now know I am loved and worthy of being loved in many capacities.

Over the past month or two, I’ve noticed my grip has declined. I’ve been dropping things a lot more frequently than in the past. It makes me sad. I don’t know if this is the disease progressing or if I’m just getting tired out more easily since I’ve been doing a lot of writing and hand work lately. The third possibility is my mind is twirling all of the time and I’m not paying attention to what I’m doing which could be totally possible. Whatever is happening, it’s an ability I’m losing. I have to pay attention to what I’m doing now instead of just doing it.

Since I was in the hospital in February, I have lost a lot of my confidence in my standing ability. To be completely honest, every time I stand I wonder if it will be the last time I’m able to do it. I trust my arms a lot more than I trust my legs, but I don’t want to give up. I’m battling within myself. Is it better to keep pushing and possibly fall and do more damage to myself or is it better to stop and trust my doubts? My mom has always told me to trust my gut and I almost always do, but I’m conflicted here. If I decide to stop standing, that’s just one more ability I’m losing. On the other hand if I were to fall and break my leg or ankles again, it would be the end of me standing and I would have to go through the pain of having broken bones. I hate giving in to this disease but I also need to be practical. I’m a little embarrassed to admit this, but the main reason I want to stay standing up is that I want to wear regular pants. Right now I’m wearing adaptive pants that open in the back. They are amazing and so helpful, but I want to wear MY clothes not adaptive ones. In the big pictures this is probably a silly thing to be sad about, but my feelings are valid and I have to remind myself of that.

When I was in the pit of my depression and darkness, if you told me that one day I’d be in a wheelchair and unable to take care of myself I would have thought that will be the worst my life could ever be. I’m not saying being in a wheelchair is the worst thing that could happen to you. I’m talking about losing my independence. It’s a hard pill to swallow. Actually, my life is better than it’s ever been. I’m happy, I’m loved, I’m hopeful and I am truly blessed that I have the perspective to realize that now. Yes, I am struggling with losing more abilities, but I am finding a deeper appreciation for the abilities I still have.

(Looking at this picture of me when I was round four years old, it breaks my heart that I was so cruel to her when she got a little older.)

June 16, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Yesterday I went to Safari North Wildlife Park in Brainerd Minnesota. It was a spontaneous decision but it worked out great! My parents and I met my cousin and her three kids there.

Besides the company, my favorite part was seeing and feeding the two giraffes, Jigsaw and Puzzle. As I rolled up to the giraffe enclosure, there were probably ten or twelve people already feeding carrots to the giraffes. I had a cup of carrots in my hand and when Jigsaw looked up and saw me, he walked directly to me. I’m pretty sure he just wanted the carrots but in my mind he recognized me. Excitedly I said “Hello old friend,” while holding out a piece of carrot. His rough and slobbery tongue wrapped up the carrot, brought it to his mouth and then stuck right back out for more. This magnificent giant had given me the privilege of feeding him. As I looked deep into his big beautiful brown eyes, I hope he felt the love I had for him in that moment. It blows my mind that I was allowed to be next to this wonderful being and able to experience such joy. As he ate up more carrots, I thanked him for letting me feed him. He looked at me for a moment then went on to the other people there. It was a magical moment.

Something else happened that made me more emotional than feeding the giraffes. My cousin, who is now in his 30’s, wasn’t able to join us because he had to work. Luckily, his wife and three kids were able to make the trip. Anyway, I remember when he was born. I helped take care of him. He was such a sweet baby. I spent a lot of time with him when he was a little boy. Now, watching his oldest son, who is six, was just like watching my cousin when he was little. It was a Pete and Repeat kind of moment. (I wonder if that’s a well known phrase or was that another thing Granny made up?)

He looks and acts so much like his dad did. He has the same nape and neckline as his dad did too. He has the same excitement and curiosity in his eyes, yet, at the same time, he’s so uniquely himself. It has been one of my biggest honors watching him and his two siblings grow into their beautiful selves. Time marches on, too fast for my liking, but the blessings that come with it are more than I could have dreamed of. Thirty some years ago or yesterday, it felt so familiar. I blinked back tears a few times yesterday, for the boy that’s now a man and for the boy who came from him. Both beautiful, loving humans who I am blessed and proud to love with my whole heart. (P.S. I love their whole family just as much-and they love me too! How lucky am I??)

(Pictured is Jigsaw, he’s just so cute!)

June 9, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

I had a fantastic day on Saturday. It was the day of my book launch and it was more than I could have ever imagined. So many people helped set up, run the event and clean up. I was stress free and enjoying every minute of mingling.

I saw so many people that I haven’t seen in a long time, I saw people that I am fortunate to see often, and I missed some very special people. I don’t think I have ever felt more loved than I did on Saturday. Everyone was so generous. We held a fundraising event for curelgmd2i that was extremely successful. The whole day was perfect. Just as I thought it was time to go home, we decided spontaneously (or so I thought) to go to the restaurant at the venue for dinner. As I walked in I heard “Happy Birthday to You” being sung. I looked out and everyone was looking at me! My mom had planned a surprise 40th birthday party for me. I’ve never had a surprise party before and boy did she get me! As tears ran down my face I went to my mom and hugged her. This party was very unexpected as my birthday isn’t for 6 months. The whole day was magical and I will cherish it forever.

My book, Ready to Run: Living with Muscular Dystrophy, is now available online. You can find the links on my website melissajhaugen.com but it is available as a paperback through Amazon, Barnes and Noble and Bookshop.org. E-books through Amazon, Barnes and Noble, Apple Books and Bookshop.org. It will be available as an audiobook (not narrated by me) June 25, 2025 on Amazon, Apple Books and Audible.

My heart is full and my spirits are high. I have so much hope looking to the future. Today was going to be my last MMM as this was just going to last until my book launch, but I think I need to go a little further on this journey. After words of encouragement this weekend, I have decided this isn’t the end. I invite you to join me a little longer on this journey as I navigate through this new chapter in my life. Thank you for your support, your love and your kindness, it means more to me than you’ll ever know. See you next week!

June 2, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

I moved into my house in 2019 and for the very first time since then, the maple trees across the street have helicopters on them. The helicopters are winged seeds that spin when they fall, resembling a helicopter. It made me wonder if they are on a seven year cycle. And then it got me wondering what else is on a seven year cycle.

My first thought was army worms. Thankfully those can be twelve to twenty years in between infestations. Yuck!  I heard somewhere that cells regenerate every seven years, which is somewhat true. Yes our cells regenerate, but not like every seven years we get a total reset. Our cells are constantly changing, as I understood it, but they are all changing at different paces. There is a legend in Scotland (random, I know) that if you dip your face into the water beneath the Sligachan Old Bridge for seven seconds,  you will be granted with eternal beauty by enchanted fairies. I also read about a theory that life progresses through a series of seven year cycles, believing that every seven years there will be a shift in your life. Where was I seven years ago?

Summer of 2018:

I was living in a different house in a different city. I only had Ruby; Riley would join us in the fall that year. I was just getting acquainted with my first power wheelchair, Rocky. Finishing and publishing my book was not even on my radar at that time. I was completely consumed with learning my new normals while grieving the losses in my abilities.  I never imagined I would be where I am today. I am happier than I’ve ever been. I am living independently in my own home. I don’t take that for granted. I feel secure. I am thankful. I am at peace.

I am excited (but not rushing) to see where I will be in seven years from now. Will there be a cure for muscular dystrophy? Will our world be less divided? Will I have seven more dogs to love? Hopefully the first two will be true, the third one though, probably not, but it sure would be fun! Whatever happens I’m going to face it with love in my heart and as much joy as possible!

(Picture: the helicopter seeds in the maple tree)

May 26, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

When my brother and I were little, we had red play phones that were connected to each other so we could talk when we were in our separate rooms. The long cord ran along the perimeter of his room, out the door and into my room. They were battery operated and worked like walkie talkies. I’m sure we weren’t as sneaky as we thought we were by talking after we were told to go to bed, but our parents never took them away from us. They were probably happy we were getting along. Some nights it felt like we were up hours past our bedtime giggling back and forth, but in reality, it was probably only twenty minutes. I loved that he was only a phone call away.

When he went off to college, I wished I still had a phone that was connected to his. Instead we mostly communicated on yahoo messenger, me on our dial up internet. We had call wave, so if there was an incoming call, I would have to log off the internet so my parents could answer the phone. How far technology has come, huh? He did have a cell phone so it was still nice to know he was still only a phone call away, even though we had to wait until unlimited phone minutes after 9 pm.

Next week, my brother will be at my house visiting for close to a week! Today, I thought about those red phones we used to have and how fun it would be to put one in his room here so we could talk after we go to bed.

I am so lucky that my whole life my brother has only been a phone call away. Whether he’s in the next room or across the country, he’s always on the other end of the line. I don’t take that for granted. Sometimes he might wish he wasn’t so easy to get in touch with but too bad, haha. After close to forty years, he’s stuck with me now so he might as well embrace it.

May 19, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

With only four more Mondays to go, I really wanted to make sure that I covered everything I wanted to talk about in these MMMs, but as I sat and thought, my mind turned into a deserted ghost town with tumbleweeds blowing around. I couldn’t concentrate and I was at a dead end. I put my phone down and went on with my day and that’s when something magical happened.

My family has a tradition when someone in our family passes away, we think of them as a specific bird. It started with my granny being an old black crow because she called herself that and she loved sparkly things. So now, when I see a crow, I say “hi granny,” and it makes me feel closer to her. Anyway, birds are special and I love them.

Next week will mark one year since my uncle passed away. He was one of a kind. He worked harder than anyone I know, he loved fishing more than anyone I know, he loved his family and life more than anyone I know. Whenever we got together it was a “party.” It didn’t matter if we had peanut butter and jelly sandwiches or a four course meal, it was the best thing he ever had.

“Oh this is wonerful, we’re havin a party!” he would exclaim with the biggest smile across his face! He took me fishing for fourteen hours on Lake Superior and it was one of the best days of my life. He always made me feel special and without fail told me I had the most beautiful smile every time I saw him. When he got older, he suffered from a disease similar to muscular dystrophy- I’m pretty sure it is a relative disease to MD. He got sick often and was in and out of the hospital. Many times we thought we were going to lose him. When I’d call or we’d go to visit him he would say “I’m doing great, they are taking good care of me here.” He never complained even though he had a lot to complain about. He was always thankful. He was in a power wheelchair after the onset of his disease and on more than one occasion we would have wheelchair races down his driveway. He always won but that didn’t matter, we laughed the whole time and loved our time together.  He was an incredible man and I miss him dearly.

Back to the birds. When he passed away, we decided he would be a Canadian goose because he was such a silly goose. He did silly things, he said silly things and it just seemed fitting. Saturday I was talking to my mom telling her how much I missed him and I wish I could call him or go visit him. He was so excited that I was writing a book and with the book launch coming up I just really wish I could talk to him. 

Things will come together here shortly, this is the magical part. I have lived in my house for a little over six years. On Sunday something happened that has never happened in the whole time I’ve lived here. My mom and I were sitting at the dining room table and we saw a cardinal! It flew from across the street and landed in a tree in my neighbors yard. I’ve heard on many occasions that when a cardinal is here a loved one is near. I know that had to be my uncle! I’ve been missing him and thinking about him so much knowing it’s going to be a year next week and wishing I could share my whole book experience with him. I believe that was him telling me that he’s here and he is a part of this! It brought me comfort and peace. I still think he’s a goose, but I think he came to visit as a cardinal. Like I said, he always made me feel special and seeing a cardinal in my yard after six years of waiting, I know it was him. Love you and miss you Uncle D, hope you come to visit again soon! 

Hope you all have a magical week 💜

May 12, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

The other night I was watching a re-run of “The Middle,” a sitcom that was on from 2009-2018. It’s about a family living in Indiana and their day-to-day struggles with life, school work and relationships that I find hilarious and relatable. One of the characters, Brick, mentioned a metaphor in Buddhist teaching of “the glass is already broken” and gave a brief explanation of what it meant. I read up on it and parts of it are a little sad but in general it made a lot of sense. Basically, it’s encouraging the appreciation of the present moment because nothing is forever. As far as the “glass,” you use the glass, it’s beautiful and functional and appreciated, but when it gets knocked over and shatters, it was “already broken” in your mind making every moment you had with it precious. Instead of being sad that you don’t have the glass anymore, focus on the time you had with it.

I have a very special glass. The bottom is pointed crystal and the top inch or so is dark red. My Granny and Papa had it at their apartment and they let me use it. I always felt so special when I got to use that glass. Now, I have it in my home, but I’ve been scared to use it. It’s wrapped in a towel and sitting in a drawer. After learning about this theory, I think it’s time to take that glass out of the drawer and use it. I can’t drink out of a glass very well because it’s hard for me to tilt the glass enough and it’s too short to use it with a straw, but I can make use of it in a different way. I can put it on a shelf and put artificial flowers in it or something, but it needs to be used and seen. I don’t know where they got this glass, it could have been ten cents at a rummage sale or one hundred dollars at a department store, but that doesn’t matter. What matters is that they made it special and it holds a lot of memories of Granny and Papa with it. If one day it does shatter, that won’t take away from how much I loved Granny and Papa or my memories of them.

I know I took that very literal as a glass, but I’m going to start using it in general too. My brother made me a gorgeous blanket. It took him a lot of time to knit it and I love it so much. I haven’t used it because I don’t want the dog’s nails to get caught in it or anything to spill on it. He didn’t put all of that effort into it for it not to be used and appreciated. That needs to come out of the drawer too! Things in my life that are special aren’t going to be any less special if I use them and they get worn or broken. I have a hoodie that I wear a lot and it’s starting to get see-through in a couple of places and the cuffs are falling apart. I still love wearing it. I told my mom it looks a little ratty but she said it looks well loved. That stuck with me. Nothing is permanent in our lives and I can’t take things with me when I’m gone so I might as well enjoy them and make them well loved while I can.

(I took my glass out for this picture and it’s staying out!)

May 5, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Today my dad turned 70. I’m not sure if it’s harder on him or me. When I was a kid, I never thought that my parents would get older. I thought I would catch up to them and we would all be adults together. They didn’t change over the years like me and my brother did so I didn’t think of them as aging.

When I was little, my daddy was the strongest man in the world. He was definitely strong, but in my mind there wasn’t anything he couldn’t lift. I also thought he was a math genius, no matter what the equation was he knew the answer. Again, he was good at math but I thought there was no one better. I liked playing catch, shooting hoops, going fishing and playing games with him. I missed him while he was at work and I was excited when he would get home. (When he wasn’t crabby!)

I’ve learned a lot from my dad. He taught me how to check the oil on my car, how to bait a hook, how to play softball and golf and how important it is to follow directions when assembling things to name a few. I still can’t make a grilled cheese sandwich as good as he does. The most important thing he has taught me is how to be resilient. He had a rough go of being laid off from the mines more than once but we never went without a roof over our heads or food on the table. He took many jobs after being laid off. I think the hardest he worked was driving semi. He worked such long awful hours, but he never gave up. He missed out on fun things a lot of the time because he has to go to bed early so he could get up at midnight for work. He very rarely missed work and showed me and my brother on how to have a good work ethic.

My dad and I like to tease each other a lot. If you didn’t know us, you’d think we disliked each other, but most of the time I like him. Today I’m grateful that I have my dad and that I can still learn from his seventy years on this earth. I remember when he turned forty, how have thirty years gone by so quickly? I hope I have him for another thirty years, but time really needs to slow down.

Happy 70th birthday, Dad. Love you!

April 28, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Many years ago I read a story (and I’m totally paraphrasing this) relating people’s energy with spoons. Basically, each person has, let’s say, twenty spoons each day when they wake up. Each activity takes a certain amount of spoons to complete depending on your health and abilities. For example, getting out of bed in the morning, taking a shower, brushing your teeth and making breakfast might take one spoon of energy for some but another person with a chronic illness or disability it might take four or five leaving them with less spoons (energy) to last throughout the day. I’ve thought about this many times since reading it so I looked it up and it’s called the spoon theory.

When I was young I had so many spoons left by the end of the day, I wish I could have banked them to use now! It’s frustrating when activities that barely took one spoon now take three or four spoons to complete. I’m not very conservative with my spoons. I tend to overdo it and suffer the consequences later when I can’t lift my arms. Occasionally after a long day of arm usage, I don’t have enough energy to brush my teeth before bed so it gets pushed until the morning. If I’ve had a super busy day I sometimes have to spend the next day in bed not just resting my muscles but replenishing my energy supply.

I used to be able to do more with my arms. I could help with things like painting the walls of my home and sanding and refinishing my kitchen table. I really miss being able to cut my parent’s hair and color and style friend’s hair. Now, if I use my arms too much during the day, I need assistance with dinner. I couldn’t feed myself when my mom and I were having salads one night. I had a long day and I just couldn’t do it. As I sat there being fed, it really hit me how much I’ve changed even in the last five years. I have kind of been in a funk since that happened about a month ago.

This week as I thought about what I wanted to write about today, I thought about writing how sad I felt when my mom had to feed me. The more I thought about it, the more I realized that wasn’t true. I’m not really sad that I needed help, I was just focusing on the “I can’t” part. I acknowledge that it is a sign of my strength declining but I’ve accepted that and I hold a space to grieve the abilities I’ve lost. I’ve just been looking at this all wrong. I am living such a great fulfilling life that I have days full of activities and adventures that I get tired out from and I am thankful my mom is here to help feed me. I am not losing an ability, I am just asking for help when I need it and that’s okay. I am not a burden for needing help. I am choosing to use my spoons on things that bring me joy and if, by the end of the day, I need a little extra help, that’s okay. Don’t we all need a little help sometimes?

April 21, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

I thought I had a “type A” personality but it turns out I have a “type C.” I didn’t even know this was a thing until a few minutes ago. According to google, there are four personality types:

• Type A is the director. They are goal oriented, risk takers and good under stress.

• Type B is the socializer. They are relationship oriented, outgoing and enthusiastic.

• Type C is the thinker. They are detail oriented, logical and prepared.

• Type D is the supporter. They are task oriented, stabilizing and cautious.

I am very detail oriented, logical and I try to be as prepared as possible. Saturday night something happened that I was not prepared for and quite honestly it never even crossed my mind before.

I was ready for bed so I went into my room and rolled up to my bed. My mom helped me hook my sling up to the hoyer lift. I use a wall mounted hoyer lift for transfers to get in and out of bed every day. I pushed the button on the remote to lift me out of my wheelchair. I was hanging out in the air while my mom moved my wheelchair out of the way and got the commode to set under me. I used the remote to lower myself but I didn’t move. I pushed the button again and I didn’t move.

“Mom is the lift unplugged? I’m not moving.”

“It’s plugged in” she replied.

The stress sweats started immediately.

“What are we going to do?” I asked frantically as I repeatedly pushed the button.

I tried to read the emergency release instructions but I was leaning back and couldn’t point to the release mechanism and my mom wasn’t sure what part I was talking about. My mind instantly went to we will have to call 911. How are they going to get me down from here? How will I get in and out of bed until we get this fixed? Can I hold my bladder until I get down from here? Am I going to have to sleep in my wheelchair? This is bad. This is really bad. It’s Saturday, I won’t be able to talk to anyone until Monday. This is so bad. My heart was racing, my breath was starting to get short and I was feeling the adrenaline pumping through my body. Nothing like a good ole fashion rabbit hole worst scenario spiral thinking extravaganza in the middle of a situation.

“Oh it is unplugged! The remote is unplugged!” my mom exclaimed.

She plugged the remote back in and I lowered myself on to the commode. I took some deep breaths and tried to settle down. After a couple of hours I calmed down enough to get a good night sleep.

What did I learn from this experience? First of all, we need to figure out the emergency down function when we aren’t in crisis. Secondly, it never occurred to me that the lift would/could stop working one day. I almost always have a just in case idea, but not for this. This will be my next focus so if we do have a situation where the wall lift quits working I won’t be up the creek without a paddle. Finally, I need to try to figure out how to stay calm and think clearly. One of my biggest fears is getting stuck. When I slept in a recliner I was very nervous that the power would go out and I’d be stuck in it. The same went for when I was in my adjustable bed. It did happen in both the recliner and my bed that the power went out and I was indeed stuck. All three of these situations of being stuck made me feel helpless and afraid. I couldn’t move. I felt almost claustrophobic with the fight or flight mentality. It totally makes me panic. I’ve never felt this way until my mobility decreased because it was never an issue as I could get up from the bed or roll out of a recliner.  It is frustrating that I can’t do those basic things anymore. I depend so much on electricity and medical equipment for everything. I don’t know what I would do without my assistive devices and my supportive care team. I sure am blessed to have the privilege of being taken care of in my home. I know this isn’t the case for everyone and I don’t take that for granted.

(I don’t have a picture of what I look like in my sling on the hoyer lift so I’ll post a picture that looks practically like me, you probably won’t even be able to tell a difference. The second picture is of the wall lift in my bedroom)

April 14, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Spring has always been a welcomed time for me. I don’t like winter so when I see the first robin of the year I perk up. Growing up, there was alway a contest between my papa and me as to who could spot a robin first. Whoever won called the other to brag of their accomplishment. It’s a bittersweet tradition I still take part in and when I see that robin, I think of Papa and smile.

Spring comes with the magic of new life and a fresh start. My perspective changes and I get a renewed energy. My mind usually spins with ideas to freshen up the house. This year I decided to change up my living room. I found the perfect purple paint for three of the walls and silver sparkle material to hang up on the fourth wall. As you know, I love sparkly things so this seemed like a perfect fit. The project is almost complete, I’m waiting for the curtains to come and complete the look, but so far I love it!

Spring cleaning gets me every year. I try to ignore it, but the power is too strong. I want to “Marie Kondo” the whole house.  She is an organizing consultant and had a show, “Tidying up with Marie Kondo” where, according to Google, the core principle was to keep only the items in your home that spark joy when you hold them. If they do not serve you or bring you pleasure, discard them. I want to open every window, clean the house from top to bottom sorting out my joy, all while listening to house cleaning music. When I was a kid, as I remember, the house cleaning music was picked by my mom and was usually Kathy Mattea or Reba McEntire. I loved country music but I was much happier listening to the ladies than when she would put on “Cattle Call” by Eddie Arnold. Sorry cattle call fans, it’s just one of those things! Now though, I find myself wanting to turn on that classic country, taking after my mom who got it from her mom.

I’m not able to do much cleaning for a couple of reasons. One, the logistics of it. It’s hard to get my wheelchair in all the places, which is clear by all of the dings in my walls and doorways my chair has made. Two, my body isn’t equipped for that anymore. I have a hard time reaching my arms out especially to apply pressure when wiping something down. I don't have the muscle necessary for scrubbing. My elbow grease has dried up. If I use my arms a lot, especially if they are extended, it causes my breathing to become labored and my oxygen levels drop. Luckily I have services that can help with light house cleaning. And I have my mom for the deep stuff .

Losing my ability to clean the house isn’t the worst part of having LGMD. I mean, I never really liked cleaning anyway. You gotta take the wins where you can!

April 7, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Imagine having a physically exhausting day. You’ve been up since six in the morning and it’s now eleven thirty at night. You can count the amount of times you’ve been able to sit down today on one hand and three of those times happened in the bathroom. Cleaning the house, raking the yard, working in the garden whatever makes you exhausted filled up your entire day. You’ve showered and can finally crawl into a nice comfortable bed. Starting on your back to stretch, you then roll over. The warmth of your pillow contours your head as you turn on your side while you cozy down in the blankets. Maybe you turn to your stomach or other side finding that perfectly comfortable spot to drift off into a renewing restful slumber. I hope you can relate to this feeling, it’s one of the best feelings that I remember.

Having MD has really limited my bed mobility. I can’t move my legs or torso enough to turn on my sides. For the past 5 years I’ve been exclusively sleeping on my back. I didn’t think I would get emotional writing about sleeping, but as I am writing this I’m feeling tears running down my cheeks.

I miss sleeping on my side. It felt so good and was my position of choice. I sleep good now, don’t get me wrong, I am very thankful for that, but I miss being free in bed.

Bed mobility is probably an obstacle for more people than I realize, it’s not just an MD problem. I’m just writing about me today because I know me best.

I miss spooning. I liked being the little spoon. It makes me really sad thinking I might not be the little spoon again. Feeling that sense of security and safety was the best sleep I’ve ever gotten in my life.

It seems MD is taking more things from me all of the time. I am trying to give myself the grace to grieve these things. Acknowledging these feelings is an important part of acceptance and moving forward. Of course I am blessed and thankful for the life I have but I do miss my life before MD started to take things from me. I get angry and bitter. The other day, my mom had to help me eat a salad because my arms were so tired out. It makes me sad and mad that I’m changing so much. It also makes me terrified for the future. I have to keep the faith that a cure will be found. I thought I was going to have the opportunity to be involved in a gene therapy trial, but I found out last week I didn’t qualify. It’s one step closer though since they now have my information and I might qualify in the future. Until then, I’ll try to keep positive vibes when I can while leaving room for all of the other valid feelings in my head and my heart.

(Picture: here I am happily in my bed!)

March 31, 2025

When I was a little girl I was very innocent and trusting which made me extremely gullible. After my parents practiced on my older brother for four years they were experts by the time I came along. I was a great target, not only for my parents but for my older brother who had learned well from them. The funny (or maybe sad) thing is, I never learned and I kept falling for their tricks so they kept them coming. These pranks ranged from my brother telling me that “moron” was French for “sweetie pie” so I proudly called myself a moron over and over in a singsongy tune to telling me we were shopping for clothes in the “pa-titty” section while browsing the petites.  One of his most memorable pranks was putting Cocoa Puffs outside on Easter morning and calling me out to show me proof that the Easter Bunny had been there. He then proceeded to pick up a puff and say “it looks like bunny poop,” sniffs it “smells like bunny poop,” pops it in his mouth “tastes like bunny poop!” This caused my five year old self to panic and gag as I went running inside. The rest of the family was roaring as they watched from the window.

He got me good many times through my childhood but the master, my mom, probably got me the best.

One day, when I was around eight years old, I was putting clean dishes away. I was in the middle of putting the plates in the cupboard when my mom called me over to the stove on the other side of the wall where she was boiling eggs.

“Miss, listen!” My mom said.

I tilted my head in to hear better. For those of you who have never boiled eggs, as they are heating up they have a high tweet like sound.

“It’s the baby chicks!” She exclaimed.

I was horrified that we were boiling these poor baby chicks to death I turned and ran and hit the cupboard door that I had left open, tearing it off its hinges. That didn’t stop me as I continued to run out the back door. After I calmed down and she finished laughing, we assessed the damage and realized the door wouldn’t be able to be hung back up so we took the other door off so at least it matched.

I wish I could say I’ve grown out of this gullibility but I can still get tricked easily.  Maybe one day I will learn but I wouldn’t bet on it.

(Pictured is the proof I was sweet and innocent, I mean who would want to pick on this precious little girl 😉)

March 24, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

I love things that sparkle. Every room in my house has some sparkle element to it. I have glitter in the paint I used on the walls. My light fixtures, shower curtain hooks, cupboard handles and my bedroom door handle all have crystal elements in them. Ruby and Riley’s collars and name tags are sparkly. I add bling whenever and wherever I can. It makes me happy. The one (and only) thing I love about winter is when there is fresh clean snow and light sparkles off of it. My mom told me that’s God’s diamonds. It’s so beautiful it looks like a white blanket of diamonds. This weekend, I had help putting sparkly material up on my living room wall. The reactions to that have been split- either people are like oh that’s going to be so cool or they look like what are you thinking? There hasn’t been any in between reactions which I find funny. It is up on the wall now and once they finish with the trim and such I think it will be fantastic!

There are so many things that sparkle in my everyday life. The more I look around, the more sparkle I find in things I hadn’t always noticed before. I have found as I get older, I appreciate things and take the time to actually see what’s around me. I am trying to be more aware of my surroundings instead of tunnel visioning to get my agenda taken care of. There is so much beauty in the world around us. I have to admit, as of late, I have been focusing more on the negative things going on in the world. There is a lot of bad things happening and it’s scary and worrisome for a lot of people. It’s easy to get consumed by all of that. I am trying to focus on the beauty and the good things because I need that to keep me going.

I’ve been watching the series “The Americas” and that has reminded me of the sparkle in nature. It’s been a great reminder to keep looking because even when things look hopeless, there is always something beautiful even in the darkness.

I have been told I’m extra. I think that means I’m extra sparkly and I’m not going to let anyone tell me anything different!

March 17, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Standing up is something most able bodied people probably don’t think about that much. I did because I struggled with it but I’m guessing if I had been able bodied it wouldn’t have been a focus for me. Perhaps if it hurts to stand up or as a person ages you may think about it more, but I’m guessing otherwise it comes pretty automatically. This is what I have observed anyway.

For me, standing up is something I take very seriously. If something goes wrong and I fall, I could get hurt or break bones (which has happened). When I fall, I have to call 911 for lift assist so I don’t get hurt further. It’s a big headache that I would prefer to not have to go through anymore ha!  Since being in a wheelchair, my body and its abilities have greatly changed. I could stand while leaning on a chair but I needed assistance to do this. I can no longer pivot.

Today marks 5 weeks since I was discharged from the hospital for influenza a, pneumonia and bronchitis following RSV. During that whole ordeal I lost some strength and I didn’t stand up. I used the wall Hoyer lift for all of my transfers at home. After I started to feel stronger and healthier, I didn’t have the confidence to stand. I started in home physical and occupational therapy about 3 weeks after my discharge. One week into my therapy I stood for the first time in a month! It was very scary for me. I didn’t know what my legs were going to do. I didn’t trust that they would do their job. I stood for probably 30 seconds. It was a huge accomplishment! I couldn’t help but focus on the negative though that my legs felt so heavy, nothing like they had the month before. I wasn’t convinced at that point that I could continue to do it. Two days after that, I stood for close to a minute, two days after that I stood for a minute and a few seconds. My confidence improved but I was still leery. I feel I can sympathize more with people who have neuropathy and can’t feel their feet. It’s very frightening. I am trying to build my confidence with every stand I do. I’ve been standing at least once every day for the past week. I’m hopeful I can get back to where I was before I got sick, but I’m still struggling.  My anxiety about falling has been hindering me for sure. I have 100% trust in the people helping me, it’s my legs I need to get more encouragement from. It’s a delicate balance of doing what’s healthy for me and doing too much causing my muscles to break down faster.

I think a lot of times I tend to discount my honest feelings because I tell myself it could be much worse. Feelings are valid  though and I have to remind myself that it’s okay to be frustrated or angry with my situation even though, yes, I am very blessed.

I have been homebound for the last 5 weeks. It’s hard. Especially when the sun is shining. I’m mad that I’ve lost yet another ability to transfer like I used to. I am working on getting it back, I think that anger is fueling me to do more. I’m fighting being down in the dumps. I miss the normalcy I had before getting sick. I hate that being down for a week made such a huge impact on my body. My anxiety is high trying to remember what exercises I need to do for physical and occupational therapy, the breathing exercises I need to do, checking in constantly to see if I’m feeling any congestion in my chest. I’m trying to make a routine and I’m failing. I’m very excited for my book to come out in June, but this last couple of days listening to my story on audiobook has made it VERY real that everything is going to be out there in less than three months. I have so many emotions and with the slippery slope of depression that hides within me, I’m treading very carefully.

Most days I try to be positive and spread that positivity but I think it’s important to acknowledge that all the other feelings are important to talk about too. I want to normalize talking about all of my feelings in my life so it becomes easier and hopefully not so overwhelming. I hope you all have a great week, but if you are struggling know you aren’t alone and I’m sending you a big warm hug right now. Be gentle with yourselves and I’ll try to do the same. 💜

March 10, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Today I’d like to share my experience with getting my eyes checked. Two years ago I had my eye exam done about an hour away from where I live, mostly because I heard they didn’t dilate your eyes there. I am very sensitive to it and takes a long time for dilation to wear off.  This year I thought I’d try somewhere closer to home and hope for the best with having my eyes dilated.

I made two appointments, one for my mom and one for myself, at a local optometrist office. The only time they have two appointments together relatively soon was at 9 and 9:30 in the morning. Those who know me know I don’t usually get going until 10 am so having to be there by 9 was already challenging. Once we got there they gave each of us a clip board with paperwork to fill out. The receptionist and the other employees watched me enter in my power wheelchair so they knew I was in a chair. After we gave them the paperwork back then they ask if I can self transfer. I told them I couldn’t. The lady watching from the next room says “Well then we can’t give you an eye exam.”  I was not expecting them to say that. I guess it was my fault for not asking when I made the appointment but I assumed (which I know I shouldn’t) that since the building used to be a clinic that it would be accessible. We left and went and had a blueberry muffin at the local coffee shop since we were out anyway.

After that experience, when I called to try somewhere else local, I made sure to ask if their building was accessible. She assured me it was accessible outside. I inquired further making sure to tell them I was in a wheelchair and I couldn’t transfer out of it. She again assured me that it wouldn’t be a problem and set me up for a virtual appointment. I made an appointment for my mom as well. The next week I got a call from their office saying my insurance didn’t cover a virtual appointment so I’d have to be seen in person. I asked again if it would be a problem being in the chair and they assured me it wouldn’t. The following week we went to get our eyes checked. We filled out our paperwork and I had my pre-check. When I came out my mom and my PCA (personal care attendant) showed me some glasses they thought I should try on and then went to sit in the chairs while I browsed.

The eye doctor came out and asked THEM if I could transfer. I was right next to them looking at glasses, he could have easily asked me. They said no simultaneously. I turned around, mad that he didn’t address me. He said “uh-oh we have a problem. I won’t be able to do your exam today as our chairs don’t move. You’ll have to come back for a virtual appointment.” I told him my insurance didn’t cover virtual appointments and I called and specifically asked if you could accommodate my needs and I was assured there wouldn’t be a problem. His response “well all I can say is I’m sorry.”

I was mad but my mom was MAD! She spoke her peace as we left the building.

I didn’t think it was going to be so hard to get my eyes checked! So after those two failed attempts I went back to where I went two years prior an hour away from home. It was a fun day to get out and go for a ride, but I don’t think I should have had to. Accessibility needs to be improved so much. I didn’t realize it was as big of a problem as it was until I was needing the access. I’m trying to raise awareness that this needs to be fixed. You don’t know until you know, then you can do better.

March 3, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Today this is kind of hard for me to write about. Today we would have been celebrating 73 years. Today should have been a day filled with happiness, but as so many know the feeling of missing someone who was taken from us too soon, today is bittersweet.

Someone very important to me, a friend, a teacher, a guidance counselor, a support, a secret keeper, a cheerleader and another mom, would have been 73 today.  We were in each other’s lives for sixteen years.

“I really think we helped each other. She toughened me up, and I softened her. However unorthodox it was to move in with someone thirty-some years older than me, it worked for us.” - a direct quote from my book.

We met at work and bonded instantly. I was a mess when we met and she helped me through it. We went through everything  together- different jobs, being laid off, weddings, funerals, surgeries, celebrations, sickness and we grew to rely on one another. We lived together for eight years and it broke my heart to move out. My body was changing and my disease was progressing. I didn’t want her to have to take care of me as my condition worsened and her house wasn’t going to be accessible for me much longer. I was struggling with getting in and out of the bathtub and navigating the stairs,  both outside and as well as to the basement to get to the washer and dryer.

After I moved out we didn't see much of each other at first, but that changed after about six months or so. When we did get together it was so much fun. It was like old times of giggles and being silly together. Then I became wheelchair bound so it made things more limited. She would come see me when she could. But then she got sick. She was diagnosed with throat cancer. We hardly saw each other. I was able to visit her in the hospital a few times but I couldn’t get in her house to visit. Seeing her like that after being one of the strongest people I knew really tore my heart apart. After she recovered, she continued to be that strong woman I knew. She had surgeries, a tracheotomy, a feeding tube and still wore a huge smile on her face. I had never seen her happier than after her cancer diagnosis. It changed her.

Today, as I think of her, I am overwhelmed with mixed emotions. I miss her so much. I’m thankful for the time we had together. I’m sad that she’s missing things in her kids, her grandkids, and her sweet little great granddaughters lives. So many times I reach for my phone to call or text you. I wish we were celebrating together with a cheeseburger- the burger, cheese and the bun was her order- and German chocolate cake. I am thankful for all she did for me. I will be forever changed for having known her. I have a bonus family because of her. They are all so important to me and I blessed to have them in my life.

I hope you are having a fantabulous birthday in heaven dancing with Patrick Swayze! I love you and miss you.

February 24, 2025

Welcome back to MMM and welcome to those who are joining for the first time. 

Today I’d like to talk about my boy Riley. He’s the dog I didn’t know I needed. My mom picked him out and he attached to her at first. After I moved to my house, he attached to me and he’s been my boy ever since.

Riley is happy and easy going. Once he gets to know people he loves them and they love him. He’s silly and smart and one of a kind. He likes to play tricks on my dad by pushing buttons on the couch and turning the power off on him. It’s an automatic couch so the legs lift by the push of a button. The head rest also adjusts so Riley puts the feet down and messes with the headrest. He plays hide and seek with my mom. She will go somewhere and hide and say peek a boo and he goes running to find her. He lets Ruby boss him around. He is the follower to her bossiness.

I feel it necessary to tell you he’s never had any special training by professionals or by me, he’s was born extraordinary and extra intuitive.

Riley is my cuddle buddy, my comfort, my warmth, my constant, my laughter, my joy and my love. He is always happy to see me, even when I’m crabby. He has 100% trust in me as do I in him. He is my bodyguard, my protector. He’s little but he’s mighty.

Riley is by my side most of the time. If he’s not on my lap he is laying on the floor or in his big boy bed to the left of me. When I shower, he lays on a towel right outside the shower curtain and sticks his head in if he feels I need to be checked in on. When I’m ready for help I ask him to go get grandma and he does. When my foot plate is up on my wheelchair, I ask him to “come help mama” and he will come pull it down for me. If I am going somewhere in the house and one of his many toys are in my way, I ask him to move his toy and he does.

I have Raynaud’s disease, a condition in which some areas of the body feel numb and cold in certain circumstances and is often accompanied by changes in the color of the skin. My feet are affected by this and sometimes get red/purple in color and get very cold. Riley senses this and checks my feet by licking them. If they are cold, he will lick harder. If I don’t pay attention he nips at my leg to alert me.

Riley has epilepsy and the first couple of seizures he had were terrifying. I didn’t know what was happening. I tried to stay calm for him but I couldn’t hold back the tears. Now that I know what’s going on and what to expect it’s a lot easier to stay calm but I still fight back tears. He must know it’s going to happen because he comes to find me and he’s usually panting. He often throws up and then the seizure begins. They last anywhere from 3-7 minutes and he’s always exhausted after. I hold him and love on him while he rests and after a nap he’s back to himself.

Riley and I take care of each other. His favorite place is with me and that’s when I’m happiest too. He is so special to me, we have a bond that I can’t explain. He likes to ride around on my legs like royalty, but Ruby is the queen bee so he would be the prince in their story.

Riley is proof that mama knows best! I don’t know how she does it, but she always knows what I need and I’m so thankful for that!

Now the hard part will be deciding which of my 4,000 pictures of him I will post!

February 17, 2025

Welcome back to MMM and welcome to those who are joining for the first time. 

Fear is my least favorite emotion. I absolutely hate feeling scared. I don’t like haunted houses, scary movies or Halloween. The thought of staying at a haunted hotel and being scared all night long listening and waiting for something to happen sounds awful to me. I’m not a thrill seeker in that way. Life is scary enough I don’t need to deliberately scare myself. More than those things though, the fear of the unknown can make me feel very scared.

These past couple of weeks has had a a lot of unknown and new things for me. Overall I feel I’ve taken it all in stride. I’ve had new medical equipment to learn how to use. Some new equipment has been ordered for me to get in home. I’m going to be getting a cough assist vest. Basically it’s a vest I wear that fills up with air and gets tight around my chest and then shakes me for ten minutes. It helps to loosen anything that might be stuck in my lungs so it’s easier for me to cough it out. My mom loves to get me to laugh during it because she says I sound like a chipmunk giggling.

The newest thing to have happened was getting oxygen in my home. I knew this was likely to happen “someday” but I didn’t expect that day to be now. I feared needing oxygen because I thought once that happens, I will need it all of the time. Right now, I just need it at night time and during the day only as needed. Hopefully this will be temporary as my lungs heal but if it’s not, at least now I know what to expect. I have a concentrator in my bedroom that hooks up to my tri-pap at night giving me oxygen when I sleep. I have a tank filling machine and 4 portable oxygen tanks. It takes 5 1/2 hours to fill one of the big tanks! That really surprised me.

Having oxygen in the house is a little intimidating and I’m not the only one who thinks so. My mom has been jumpy around it too. The first night it was here, my dad turned on his lantern and my mom thought as she saw the flash of light “This is it, we are blowing up!” She also told me we had to wait to make a frozen pizza incase the cheese starts on fire. I’ve been looking for things that could cause a spark and asking (probably silly) questions if things are safe. My dad laughs at me, but my mom gets it!

Now that we’ve had almost a week to get used to it, it’s not scary anymore. The best thing is, I don’t have to face these scary things by myself. I have a fantastic support team that I’m thankful for every single day!! I am blessed.

February 10, 2025

Welcome back to MMM and welcome to those who are joining for the first time. 

This morning I am still in the hospital but getting close to being able to go home. I know recently I’ve talked so much about medical issues going on with me for obvious reasons. Today I am tired of being sick and I’m tired of talking about it. Instead I’d like to talk about joy. I think over the last four or five months I’ve lost my joy. It didn’t happen over night but slowly it slipped away making it not as obvious. I’m so thankful for the life I have, for the people I’m blessed to know and love and for the many privileges I have. I’ve realized being thankful isn’t the same as having joy. I’ve been going through the everyday motions of doing what I need to, but it feels mechanical. I’ve forgotten to look for the joy and today that changes.

I have found joy in being in the hospital. I’ve had visitors, calls, texts, beautiful get well cards and such marvelous care I can’t feel anything but joy. I’m getting better and I’m so joyful about that. My heart feels lighter. Looking out at Lake Superior, my mind has changed. I feel at peace. My anxiety has been at bay. I once read that if you don’t give your body the rest it needs, the universe will intervene and I can honestly say I believe that. Before I got sick I was having panic attacks almost daily. I felt stressed and on edge and not well. This time being sick has been challenging but I’ve stepped away from everything and focused on myself and my health and I feel the most like myself that I have in a long time.

I can’t wait to get home and see my pups. Riley has been sitting on the couch staring at the door since I’ve left and that breaks my heart. He is going to get so much love when I get home I’ll make up for the days I’ve been gone. Just thinking of him makes my heart float.

This is the reset I needed in my life. A vacation in a warm location would have been better than the hospital but hey, it could have been something much worse so I’ll take this!

A few weeks ago my niece gave me joy, literally. The picture is her artwork. She’s amazing. She’s been bringing the world joy since we found out we were being blessed with her. She’s my inspiration today to remember to look for the joy and spread the joy!

If you have lost the joy in your life like I did, I hope you find it again because it really makes a difference. If you can’t find it on your own, look to your loved ones- maybe they have lost theirs too and you can find it together.

I hope you all have a joy filled day! See you next week 💜

February 3, 2025

I’m so happy to be back, sorry I missed you all last week. This has been one hell of a ride. Around Wednesday the 8th or Thursday the 9th of January I started to get a tickle in my throat, nothing crazy. By Monday my ears were plugged but I wasn’t coughing much. On Wednesday the 15th I went to urgent care and found out I had an ear infection and a sinus infection. After I left I got a notification that I also had RSV which came as a shock. I had been scared of RSV because of my lung history but honestly I didn’t feel sick, my ears were my biggest complaint.  I was started on an antibiotic and I got probiotic yogurt and thought that would be the end of it.

Wrong, I was so wrong.

Friday morning, the 17th at 5:15 am I had stomach cramps which was the start of a 15 hour day of uncontrollable diarrhea. I found out that “shit the bed” was more than a colorful phrase for an epic fail. It was awful. The doctor discontinued my antibiotics and wanted me to focus on rehydrating. Apparently those three doses of antibiotics was enough to take care of my ear infection. I went to a follow up appointment with my primary doctor on Friday the 24th and she said my ear looked good and I was negative for RSV! Things were looking up for me but my mom started to get sick with a cough.

Unfortunately she didn’t get much time to herself for rest because Sunday night, the 26th, I got sick again. I was freezing and had terrible body aches. I’ve never experienced anything quite like that before.  Monday, I woke up tired, sore and nauseous not good for anything all day. Monday night around 9 pm I had a personal best for highest fever of my life. 102°F. My mom stayed by my side all night long switching my cool washcloths every 15 minutes. I had my bedroom window open all night but I think it was pretty mild out in the 30’s. I could not cool down. I was very lethargic and I couldn’t focus. I was dry heaving and in and out of sleep. About 5 am she was able to stretch my washcloth changes to every 30 minutes. I finally was able to sleep. My temperature had come down enough by 8am that she was able to rest for a couple of hours after giving me my Tylenol. I woke her up at 11 am and I was feeling better just very tired out. I was able to go outside and get some much needed fresh air that felt so good. I took a much needed shower and my mom changed my fever sheets and I went back to bed for a nap. Tuesday was pretty uneventful with rest and hydration. I drank a lot of water and ate popsicles and saltine crackers. I took an at home Covid/Influenza A & B test. The results showed I had influenza A. Ugh.

Wednesday was more of the same, rest and hydration. By Thursday I was feeling tired out but pretty good. I was still coughing stuff up but no fever and I was able to sip on some broth. I thought this was the end of my story. Again I was wrong, so wrong.

Thursday night my oxygen levels kept dropping and we decided I needed to go to the ER so my mom called an ambulance.

Thursday night around 11 pm my mom called 911. The ambulance showed up and took me to the local hospital. My mom followed behind us in her car.  I told the EMTs I couldn’t lay down. It is hard for me to breathe anyway reclined but with my oxygen dropping I wouldn’t be able to. They promised they would relay that information to the ER staff. I wore my Avaps ventilator the entire time as it was needed to keep my oxygen levels up so it was hard for me to talk and for others to understand me. My ventilator is similar to a c-pap or a bi-pap machine but it has much stronger specific pressures. I wear a nose piece that the air is forced in to.

At this point I was scared because, one I couldn’t breathe well. Two, I’m not always heard in medical settings. Three, my mom wasn’t with me yet. We get into the room and the staff gets ready to transfer me from the gurney to the er bed. I remind them I can’t lay down and they said they won’t. On the count of three they slide me over. I’m not laying down but I’m not sitting up and I said out of panic and short of breath I need to sit up! The doctor goes “yeah we know but you need to chill out we will get you up in a second.” I wanted to tell him I hope you never have breathing problems and mobility issues so you have to rely on others to help you because it is scary. When someone  who is in a panic please don’t tell them to chill out- it doesn’t help!

After some questions and answers, 4 IV attempts, a session of dry heaving, a chest x-ray and bloodwork, I was told I was going to be admitted to the ICU (intensive care unit). I had influenza a and pneumonia.

I get to my room around 5am which has a Hoyer lift in the ceiling. There I am informed that they don’t really like using it because it doesn’t work that well. That should be something that should be fixed then! They used it once to get me into bed, but I wasn’t high enough up on the bed so I needed to be scooted up. The nurse and aid wanted to lay me flat and I asked to use the Hoyer. The aid asked can’t you hold your breath for ten seconds while we do this. I just stared at him like are you serious? I have the lung capacity of a chipmunk, I’m coughing and I’m exhausted. Does it look like I can hold my breath for ten seconds? Finally he broke the silence and said we will use the Hoyer.

I didn’t get any good sleep that day. Just a few minutes here and there. By Friday night I was super exhausted. I was on a lot of IV antibiotics and a bunch of other things. They were hitting me hard to prevent things from getting worse. Slowly I was able to eat for the first time all week. I was drinking lots and things were stable. I’ve never been in the hospital without my mom by my side. She has bronchitis so I wanted her with me but knew it was best for her to be home resting. Friday night when she went home we both cried. I think we both needed to cry because after that I felt better. I hope she did too.

Saturday morning around 5 am my IV in my hand infiltrated, or like I like to say blew up. The RN said it wasn’t a big deal and removed the IV. I went back to sleep. An hour later I woke up and I couldn’t bend my fingers and I had a huge dome on the back of my hand. I had no knuckles. The new RN came in and said we have to get the antidote because we can’t let that sit under your skin as it will eat away your tissue and skin 😳. I felt like I was in a movie or something. My hand kept swelling as her manager was trying to find the antidote. Time was running out. Okay not really but in my overactive imagination it was. The antidote was found and I was given 5 shots and everything was okay. It is still a little bit swollen Monday morning but if you weren’t looking for it you couldn’t tell.

Saturday night I had an RN and an aid that were very opposite. For easier purposes, I’ll call the RN Lucy and the Aid Ethel. Lucy was younger and seemed unsure of herself. Ethel had been working for many years and knew the ropes. She was a hoot! The room was small with the bed, two trays, my wheelchair, a commode, their computer, IV stands. They were getting me into bed from my wheelchair and lifted me in the Hoyer life. As they slid me towards the bed, the joystick from my chair went up my butt. I announced that and Ethel started laughing and asked if it was joyful. My answer was, no I can’t say that it is. Then she proceeded to sing “I’ve got the joy joy joy joy down in my butt!” She thought it was very funny.

After getting me in bed then they were going to decide how to get the tables rearranged and I just sat back and watched the show. It took about 15 minutes longer than it probably should have but I just watched and giggled to myself.

Lucy wanted to put baby powder on me and Ethel disagreed. When Lucy went and got powder, Ethel looks and me and said you don’t want powder do you? And then burst out laughing and said look at me! I can’t tell you what to do. She was just a goof but made my time so much more enjoyable.

Sunday morning came and I got the news I got to come home! I was so happy. I missed my pups, my parents and my home so much. 6 years ago I was coming to my house for the first time when I moved in. Now I got to come home and I loved it. I took a nap got up had some dinner. I was able to take a shower and go back to bed and I slept without moving for close to 12 hours. It was magical. I still have some recovering to do but it will be much easier doing it from home.

(Pictured is Ruby and Riley after I got home from the hospital. They missed me as much as I missed them 💜)

January 27, 2025

This week's MMM will be postponed until next week due to illness. See you next week!

January 20, 2025

Welcome back to MMM and welcome to those who are joining for the first time. 

Getting sick for me, as I imagine with anyone who is immunocompromised or has a preexisting condition, can get scary.  I try to take precautions like using hand sanitizer, avoiding functions where I know people are sick and wearing a mask during peak cold and flu seasons. At the first sign of a cold I take medicine to try and keep it at bay. If that doesn’t work and I get a cold, I have things I try to do to keep it from progressing.

My lungs are fantastic. They are healthy. I thought my lungs were junk so this made me somewhat relieved. My trouble is that the muscles around my lungs are weak from MD which cause issues. Compared to an average woman of my height, my lungs are only functioning between 19-26% of what they should be. With this, my ability to cough is extremely diminished. I don’t have a lot of power to clear out my lungs of the mucus that can accumulate. A simple cold can turn into pneumonia very easily which lands me in the hospital.

I have a found medicines that help and I take nebulizer treatments (a machine vaporizes albuterol liquid for me to breathe in to open up my lungs). I also have my PCAs (personal care attendant) do back and chest percussions on me. The definition for that is “a technique that involves clapping your chest or back to loosen mucus in your lungs and help you cough it out.” That is putting it mildly,  it’s not a light clapping. It’s pounding. Hard. Up and down my back where my lungs are and on the top of my chest. One time when I was sick the doctor had me do this for TEN MINUTES at a time THREE TIMES A DAY. I’m not sure if it was tougher on me or on the arms of the ones doing the percussion. It works and I’ll keep doing it. I’ll do almost anything to avoid going to the hospital.  (I do talk a little bit about going to the hospital in my book so you can read a few examples there )

I’m trying to do whatever I can to keep from getting sick and to preserve the muscle strength I do have. I’m really scared what will happen when that lung function drops from the 19 to 26 percent that it’s at now. As it decreases, getting sick will only get harder. I know there are a lot of feelings around if masks help or not. I’m not qualified to say if they do or they don’t. I hate them. They are hot and uncomfortable but if there’s a chance it can keep me from getting sick or keep me from getting someone else sick, I’ll wear it.

I remain positive that a cure for LGMD is in the future but I’m not so sure I’m positive that it will come before my lung function gets worse. The advances in clinical trials are so exciting. There is gene therapy, gene editing and other treatments that are getting closer everyday to being ready. I am so ready for that day to come but until then I’ll just keep doing what I'm doing- it’s been working so far!

(Pictured is me doing a nebulizer treatment. I don’t only use it when I’m sick but any time I’m having trouble breathing.)

January 13, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

I hate to brag, but I have the best brother in the world. He is kind, compassionate, thoughtful, inclusive, sweet, funny, helpful, caring, loving and just the best. 

The first time he saw me in the hospital he wondered why I had booze coming out of my nose.  He also made it known that he wanted a brother, not a sister.

We did our fair share of fighting and arguing when we were little. He made me so mad one day that I packed up my favorite Barbie and some graham crackers in a suitcase and walked out the door. I had enough of him telling me what to do, I was going to run away. We lived in the country and part way down our driveway stood a huge maple tree which was set as our “limit.” We weren’t supposed to cross that imaginary line by ourselves. So I went and sat on the other side of the garage by myself until our parents came home. I was a good girl and followed the rules back then. 

Besides those rare occasions that I wanted to run away from my brother, most of the time I couldn’t get enough of him. I copied him from a young age, I wanted to be with him and his friends all of the time and I didn’t understand why he didn’t want his little sister that adored him tagging along all of the time. It made him so mad when my mom would make him take me with.

Fast forward to his high school graduation. My mom is an emotional person and everyone that knows her knows that she cries easily. As his graduation day came closer she was getting teased about needing to bring boxes of tissues to the ceremony and other jabs about her crying. I don’t know if she cried at the ceremony because as soon as I saw him walk in with his cap and gown on, I lost it and I ugly cried the entire time. I didn’t want my brother to leave for college but I didn’t expect that to happen at the ceremony. 

I don’t know if he will agree, but I feel our friendship began when he left for college. He went about 4 hours away. We had fun and bonded while growing up,  but things changed when he was in college. We talked a lot on yahoo messenger over the old dial up internet because cell phone minutes were limited then. I appreciated our time together more when he was home because I knew it was limited.

When he decided to go to the east coast for graduate school, my heart crumbled yet I was so proud of him. After his time there, he moved to New York and has been there ever since. He has been there for 18 years now. I hate it but I love it for him.

He has been a constant in my life. I know I can talk to him about anything, I can count on him for anything and I know he always has my back and loves me.

I only get so see him once a year or so, but I’m thankful that we can have that time together. I will never take that time for granted again. There have been times that I wasn’t with him much when he would visit and I do regret that. Today I will let go of that guilt and regret. I have learned that time is precious and I want to spend whatever time I have left here with the people I love. I love my brother with my whole heart and I am thankful everyday that he is mine 💜

(Pictured is my mom dressing me on a changing table while my brother is looking at me with a “I wanted a brother” expression)

January 6, 2025

Welcome back to MMM and welcome to those who are joining for the first time.

Have you ever wondered what you inherit from your parents and what are learned behaviors? I asked myself this as I watched my mom one day.

While sitting at the kitchen table balancing my check book and paying bills, my mom got up and announced she was going to go do the laundry. Half way down the hall she stops and asks me “What am I doing?”

“Laundry” I reply.

“Thank you!” She says as she continues on her way to the laundry room.

I hear the bathroom door open as she makes a pit stop. The toilet flushes and the faucet is turned on then off. I hear her open the Clorox wipes and clinking of things on the sink which means she is cleaning the sink while she’s there. The door opens. “What am I doing?”

“Laundry”

“Right”

I hear the dryer open a few minutes later she appears in the kitchen with clean kitchen towels to put away. As she goes by the sink she sees there are dirty dishes so she starts a batch of dish water.

“I thought you were doing laundry.”

“I am, I just thought I’d get the dishes soaking.”

I smile and continue balancing my checkbook. She disappears to the laundry room again. Soon I hear her coming back down the hall and she says “Look at what your brother sent me!” showing me an Instagram post on her phone. While I’m checking out the post, she goes over to the sink and starts washing dishes.

Half way through the dishes, she takes the kettle she just rinsed and sets it on the stove. After drying her hands she gets a pound of hamburger out of the freezer and puts it in the kettle to start soup for dinner.

Riley is sitting under the stove looking up at her (it’s open under so I can roll up to it and cook). She talks to him for a few minutes and says “oh I didn’t finish the laundry” and goes back down the hall.

As I finish up the financial business, I go to my room to put my purse away to find my mom sweeping in the laundry room. The laundry beads spilled onto the floor and she didn’t want the dogs to get them. While she has the broom out she might as well sweep the hallway too. When she gets to the garbage to empty the dustpan, she sees the garbage is full. She pulls the bag out and set it on the floor.

“I might as well clean out the fridge quick before I take the garbage out.”

After running the trash out she comes back in and washes her hands but ends up finishing the dishes. After drying her hands she makes a quick check on the soup and sits down at the table.

“What time is it?” She asks.

“Two.”

“What? It was just noon where did the time go?”

She looks at her list to see what she needs to do.

“I guess I better go finish the laundry.”

We will see what the future brings but from what I can see, while either inherited or learned, it looks like laundry will always be an adventure! 

(Pictured is my mom, Cheryl, holding Ruby. Riley is photo bombing in the back 😂)

December 30, 2024

Welcome back to MMM and welcome to those who are joining for the first time.

As we say goodbye to 2024 this week, I  wanted to end the year on a positive note to try and set the tone for 2025.

1 year ago today, the world became a brighter place when a baby boy was born. He was tiny and perfect right from the start. I loved him even before I met him. This precious boy belonged to my cousin. I held him for the first time when he was 1 month old and he crawled all the way into my heart and there was no turning back. Two months later when he was 3 months old my mom and I got to take care of him Monday through Friday nine to ten hours a day! The next 6 months were some of the happiest months of my life.

I have been around a lot of babies, but this little boy is by far the happiest most laid back little one I’ve ever seen. He would fall asleep in an instant and wake up with all smiles.  My job was to feed him, cuddle him and get him to sleep. My mom’s job was to do diaper changes, burp him, bathe him and roughhouse with him.

As he grew, I lost some of my confidence in holding him. We used pillows to help secure him safely with me while he slept in my arms.  He is a healthy thriving little boy and likes to be busy. I’m not sure why, but for some reason when he sits with me, he is calm and doesn’t get all wiggly like he does with other people. We ride around in my wheelchair and he looks around and is just chill. He just seems to know that when he’s with me, he needs to sit still.

This little boy has healed my heart in ways I didn’t even know it needed. I thought after going to therapy a couple of years ago and taking time to work on myself that I was whole again and ready to open my heart but I wasn’t. I didn’t realize how broken I still was until I loved him. Every day he brought me joy and an inner peace that I’ve never felt before. I think loving him was as close as I could come to experiencing what love for your own child is like without actually having a child. Being able to love him healed that part of me that wanted to be a mom more than anything. It showed me that I can still play an important role in a child’s life. I may not be a mother, but that love I have isn’t useless and it doesn’t have to go to waste. Every day I held him, my heart healed a little more. I don’t have that ache anymore that was always there when I saw a baby. I now know that it’s okay that I’m not a mom. This is the first time in my life I can say that and actually mean it.

I knew our time was limited with him because once he became really mobile we couldn’t continue to watch him, physically it would be too much for my mom and for me. The day his mom told me he would be leaving for daycare did make me cry and I was sad even though I knew it was coming. The wonderful thing about being family is we still get to see him, and often!

He calls me Abba and every time it melts my heart. When he reaches for me, looks at me, smiles at me he melts my heart. Everything he does melts my heart. His laugh is music to my ears, I could listen to him all day long. (Honestly I do watch videos of him laughing almost every day!)

This little boy is a blessing to all who know him and are lucky enough to love him. He is funny, he’s smart and a bit of a stinker. I’m so thankful his mama shares him with me. His first year has been so wonderful to witness, I hope I will be able to watch him grow because I know he’s going to do wonderful things in this world. Thank you little one for making me whole again and thank you to his mom, you have helped me finally find peace where there was always darkness.

Happy 1st birthday baby boy, Abba loves you more than you know.

December 23, 2024

Welcome back to MMM and welcome to those who are joining for the first time.

This week I would like to talk about mental health. For some, this week is full of stress with Christmas. I know Hanukkah and Kwanza are also this week, I feel bad admitting this, but I really don’t know much about either of them so I can’t speak on it. For today, I’ll be referencing Christmas because that’s what I know.

I have tried to be open with you all about my mental health struggles. I didn’t used to be open about it. I tried to hide my true feelings and pretend everything was great. I felt like something was wrong with me because I was depressed. When I had my first panic attack I didn’t want anyone to know because I felt embarrassed. Why is there such a stigma around mental health? It’s no different than saying I have muscular dystrophy. It’s part of who I am and it’s nothing I need to hide or be ashamed of.

As the holidays neared, I prioritized my mental health. Yes, I still want to celebrate with family and friends and be together, but not at the cost of my mental health. This year I did not send out holiday cards. It’s not because I quit loving people or because I stopped caring. I knew it would fill me with anxiety like it does every year making sure I got them done in time and that I didn’t forget anyone.

I only put up my Christmas tree this year. I didn’t decorate the house with my snowman village, lights and garland. Partially because I wasn’t in the Christmas spirit but also I wanted to conserve my energy for other things.

Usually, the week before Christmas my kitchen is a bakery making tons of different holiday goodies to share. This year I said no. I’m not making strict schedules to stick to that overwhelm me. Instead, I ordered cookies from a local bakery to give them the business and to take that off of my plate.

I have been struggling lately with anxiety and, if I’m being 100% real with you, depression. I know this time of year is great for some people but for others it’s not. For me, especially this year, I feel sad. There are some giant holes in my heart from people I’ve lost that just have not healed. I really miss my brother, I don’t remember the last time we were together on Christmas. We always celebrated Christmas on my dad’s side of the family, and as an adult looking back, I wished we could have spent time with my mom’s side too. I have regret and sadness mixed in with pressure of this being “the most wonderful time of the year!” This year, for me, it’s really not, and that is okay.

More than just telling you how I’ve been feeling, I want to try to normalize people talking about what they ARE feeling and not what they SHOULD be feeling. Let’s be real with each other, then we can help each other. It’s okay to ask for help. No one can do everything. Asking for help doesn’t make you weak. We put so many expectations on ourselves and it’s unrealistic and it’s unfair.

I remember one Christmas Eve my family and I had cereal and toast for dinner and played games. So many people said that sounds so much nicer than what we did with a ham and all of the sides or whatever their extensive meals were. We didn’t spend a lot of money, we didn’t spend all day in the kitchen cooking and we didn’t spend an hour of clean up after. We enjoyed our time together and it was a lot less stressful.

If it brings you joy to have the house decorated, baking lots of goodies, making big meals then that’s fantastic! I’m just saying if you don’t want to or can’t, you shouldn’t feel bad not doing it. 

Be gentle with yourselves this week. Give yourself grace and a break! That is what I’m going to do while I eat take out and watch a movie Christmas Eve with my family.

Happy Holidays to those who celebrate and hugs to you all.

(I found this picture on Facebook and I thought it was fitting to share with this post. It's from Lemons by Tay)

December 16, 2024

Welcome back to MMM and welcome to those who are joining for the first time.

Butterflies have four stages of life. Egg to larva (caterpillar), to pupa (chrysalis) and finally to an adult butterfly. The metamorphosis these insects go through are incredible. Butterflies also symbolize transformation and personal growth.

I love butterflies. That’s why I wanted a butterfly on the cover of my book. There are butterfly decorations scattered throughout my home. I also have 18 butterflies tattooed over my arm and back. Each tattoo does have a special meaning to me, but in general they remind me of the personal growth I’ve endured in my life. They are a reminder that I am not the same person I used to be. They remind me I’m not the mistakes I’ve made in my life.

Rupi Kaur said “You do not just wake up and become a butterfly. Growth is a process.”

I was in my “egg stage” until I became a teenager, developing and learning about life. Next, I was in my “larva stage” kind of a lonely teenage caterpillar trying to find my way in life struggling through the school years. After I got married at 20, I was in the “pupa stage” I was wrapped up in a bad marriage followed by divorce and then hiding myself from the world- embarrassed by my body and physical struggles. After getting my limb girdle muscular dystrophy diagnosis and with a lot of self work as well as work with a psychologist, I’ve finally entered the final stage- the “adult butterfly stage.” I have found my wings and I feel I have discovered my true self. None of the stages I went through led me to believe this is where I would end up. I’ve changed and become someone better than I was. And I will continue to strive to be the best version of myself.

I am a published author. I am a strong woman. I always try to lead with love and kindness. I am blessed. I am thankful. I am loved. I am a butterfly 🦋

(Pictured is my arm showing some of my butterfly tattoos.)

December 9, 2024

Welcome back to MMM and welcome to those who are joining for the first time.

One of my favorite things in this whole world are babies. I’ve loved them as long as I can remember, practically since I was a baby. I’ve always had a maternal instinct that drew me to them.

They are so innocent and precious and smell so good. When I hold a baby, my world slows down- my breathing, heart rate and mind slows and I feel at peace. That warm bundle in my arms or on my chest fits just like a missing puzzle piece that I want to permanently impress into my body so I never forget that feeling.

Slowly swaying side to side while they are pressed against my chest, one hand supporting them under their butt the other hand rubbing their back and lightly humming them to sleep. Breathing in that baby smell and lightly kissing them on their soft skin. Just knowing they have no worries in the world and feel completely safe within my arms is the best feeling there is for me. I’ve been very fortunate to have loved many babies. I even got the title “baby whisperer” in my younger days and that’s something very special to me.

I hate that my confidence and ability to carry and hold babies has been compromised by having muscular dystrophy. I can’t walk anymore to bounce with them. I can’t lift them up on to my shoulder or chest any more. I have to use a pillow on my lap to help support my arm as I cradle a baby. I can still get a baby to sleep, I’m happy I have that calming effect on them but it’s not the same. I hate having to ask for help to readjust the baby’s position because my strength isn’t what it used to be.

As they grow, my ability is really lessened. I can’t pick a little one up from the floor. I can’t even change a diaper once they start wiggling around. Compared to losing my voice or my driving ability, this one hurts the most. I sneak a peek in strollers going by making my nonexistent uterus ache. This is just another thing MD has taken from me and it pisses me off.

I am a positive person and I’m thankful for the life I have, I am very blessed but there are things that just plain suck. This is one of those things and that’s okay to admit and talk about. Not everything is sunshine and glitter. I just try to focus on the fact that I can still hold babies and love them and enjoy them or I’d get wrapped up in the sadness.

December 2, 2024

Welcome back to MMM and welcome to those who are joining for the first time.

I don’t remember the last time I drove a car. I wish I would have known that it was my last time, I would have done something to commemorate the occasion. I could have sped by a cop to get my first speeding ticket.

“Do you know why I pulled you over?”

“Yes officer, I was speeding trying to get you to pull me over. You see today is my last day driving a car and I wanted to go out with a bang!”

That’s how I image it would have gone but in reality I would have been too chicken to speed and get pulled over.

It didn’t happen all at once, but over time I noticed the strength in my legs fading away. Pushing the brake and switching from pedal to pedal was tiring. If I’m being honest, I should have stopped driving sooner than I did, but I didn’t want to give that independence up. The first time I had to help move my leg with my hand I should have handed over the keys but I tried to hide it instead of deal with the reality that I needed to stop driving. I mostly drove when I was by myself, which hardly ever happened, as I didn’t want to take chances with others in the car.

What finally made me stop was the fact that I didn’t want to hurt someone else on the road if I couldn’t stop fast enough, it wasn’t worth my independence.

I miss driving, especially when I want to go on a date. I hate having to get dropped off by my mom- that’s when I really feel my independence is gone and I feel like a teenager again. It’s hard having to depend on someone else to drive you everywhere, but I’m mostly used to it. Sometimes I get impatient when my plan doesn’t match up with others time frames but then I try to remind myself that it’s not that important and I can go another time. I am so blessed in so many ways and this minor inconvenience is nothing to get upset about. I remind myself that I have a vehicle to take me places- I didn’t always have that. I also have people willing to take me places. Some people don’t. I am thankful for the privileges I have and in the big picture, even though I miss that part of my independence, I’m lucky to be able to do everything I do and I couldn’t do that without the support of my family and friends 💜

November 25, 2024

Welcome back to MMM and welcome to those who are joining for the first time.

I love music. My day is incomplete without it. My favorite artist is Pink, she is amazing on and off of the stage. I grew up on country music influenced by my mom and classic rock influenced by my dad. My first concert was Reba McEntire, I was around 5 years old and I idolized her. I’d sing her songs in my best country twang shaking my non existent hips to the familiar country beats.

I loved singing as a little girl. I’d sing at church, at home, in the car, outside, pretty much everywhere I went. I remember going to visit my Granny and Papa and I’d sing for Granny as she laid in bed, bedridden from emphysema. I remember the joy on her face as I belted out Jesus loves me and twirling in my frilly dresses.

I’d turn everything into a song- even embarrassing things my brother tricked me into. He would tell me things like “moron” was French for “sweetie pie” and for some reason I would sit on the swing and sing loud enough for witnesses to hear me “I am a moron.” That still gets brought up more often than you would think.

I loved singing with my brother while he accompanied us on the guitar or piano. The harmony he added rang through my body making me feel at peace.

I continued to sing at church and in the high school choir. I tied for first place in a local singing contest, the prize was recording my own cd. I was honored to sing at a few special weddings and funerals. When I turned 21 I found my love for karaoke.

Music is everything. It’s happy, sad, hopeful, heartbreaking, angry… it’s everything.

One thing muscular dystrophy has taken from me is my ability to sing like I used to. I can sing quietly in small amounts. If I try to sing like I used to I am usually off key with the higher notes. My diaphragm isn’t as strong and my lung capacity has dropped significantly. My last lung function test found my lungs are working at 24% of the average woman my age. I was very broken when I couldn’t support my voice like I once was capable of. It felt like I lost a huge part of my identity. This had been a constant in my life as long as I can remember. And now it’s gone.

Muscular dystrophy may have taken away my voice but it can’t take away the joy music brings me. It can’t take away the goosebumps I get when I hear those special lyrics and magical melodies. It can’t take away jamming out in the car full blast to my favorite songs. It can’t take away lump in the throat I get when I hear those heartbreaking songs. And it will never take away my love of music-ever. Muscular dystrophy is strong, but I’m stronger

See you next week 💜

(Pictured is my mom and me in front of a Pink poster at her concert in 2023)

November 18, 2024 

Hello! Welcome to Meet me Mondays! I would like to introduce you into my life so you can get to know me before my book comes out. For this first week I will keep things pretty simple and as time goes on I’ll try to dig a little deeper. Thank you for joining me on this journey!

My mom didn’t want to name me Melissa because she knew everyone would call me Missy (which they do) because her aunt had a Saint Bernard named Missy. She wanted to name me Hilary or Jill. I wonder if my life would have been any different with a different name?

I grew up in northern Minnesota with my mom, dad and one older brother. He’s the best brother in the world and I’m so lucky he’s mine!

I have two dogs, Ruby & Riley. They are miniature longhaired dachshunds. I don’t like calling them wiener dogs because I really don’t like the word wiener. So they are my doxie babies. Ruby is 7 and Riley is 6. They are smart, stubborn and sassy. Riley has epilepsy. Thankfully he only has seizures every other month or so but they are still scary and I feel so bad for him. I now know how to stay calm and help him through it, which wasn’t the case when he first started having them. Ruby used to be my girl. She would cry when I left her. Now she is 100% my dad’s girl or whoever has a blanket on their lap. Riley is my little buddy. He follows me everywhere and his favorite place to be is on my lap. I love them both with all of my heart.

I don’t like raw onions and I’m terrified of spiders. My favorite color is purple closely followed by blue. Fall is my favorite season and winter is by far my least favorite. I have always loved writing but I wasn’t sure if I was any good at it. The support of family and friends has helped my confidence, but the peer reviews of strangers in the writing classes I took really helped me to see that I am on the right path.

See you next week 💜

(Picture is Riley and Ruby)

October 30, 2024

I hope you all like it as much as I do!