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!