What do you see when you look at this picture? More specifically what do you see about ME in this picture?
I bet it’s not the same thing I see.
I think this picture represents MS so wholly and completely. It is me putting on a smile based on muscle memory while my husband and kids literally, hold me up. Really, they are the only 4 people that really know what you can’t truly see in this picture. MS doesn’t just affect the person who has it, MS affects their whole family.
A week before this picture was taken I got a stomach flu. For anyone else that’s no big deal but for an immunocompromised person with MS, it’s a big freaking deal. Any type of illness creates a flare that triggers all my different symptoms. While I have remitting and relapsing MS, even when I’m in remission, I still live with all of the symptoms that each of my lesions have already created. Thankfully, not all of them rear their ugly heads daily. However, any illness can bring them all out, which could push me into a relapse and out of remission, creating more lesions with new symptoms. A simple stomach flu landed me in the hospital.
You can’t tell in this picture that I haven’t left my bed since I got back from the hospital a week earlier. Ninja showered me once, he tried to lift/drag my dead weight onto a plastic stepstool while he held me up and tried to wash me at the same time… It was a terrifying image of what may be my future, distant, but still my future, also completely demoralizing, also so hard on Ninja! That nightmare shower episode was 3 days before this picture. I probably smell, but nobody in my family said anything because they were there, they know.
You can’t tell in this picture, but Ninja carried me down the stairs, put me in the van, and then pushed me in a transport chair down the gravel path to where we were taking these photos for my Bro’s 50th birthday. I’m told it was a bumpy ride, but I wouldn’t know because I don’t remember anything. I was unable to regulate… Anything. Every noise, the bright light of the setting sun, the light touch of my dress swishing felt like being stabbed all over my body. My left side was completely numb. I had no hearing out of my left ear, my eyesight was like looking through a butter smeared window, the spasticity in my left arm was excruciating, and my mouth felt like it was drooping and drooling. I sat in that chair, head sagging, huddled into myself trying to protect myself from the pain.
The photographer was so kind and suggested we do all the photos I was in first. I stood, I took the pictures, I smiled as I trembled and gripped onto whoever I was next to, Dad, Sis, Bro they all made sure I didn’t fall. Then I was rushed back to the van, placed in the air conditioning, because temperature regulation is also something I couldn’t do at that point either. I fell asleep while I could hear my family laughing outside. It made me happy because they could finally laugh when they weren’t worried about me anymore and I wasn’t out there being a burden. Their burden.
Ninja carried me back up the stairs like I was a new bride. He got me back into pajamas as my body shook like it was in shock. Then I slept. I didn’t have the energy to get back out of bed for 2 weeks more after that.
I lost almost 5 weeks. Ninja turned 49, my Bro came out and celebrated his 50th birthday, my SIL and JQ visited, my Uncle and Aunt visited… And I missed it all.
They say MS is an invisible disease and I guess it is because you can’t see any of that in this picture.
That’s why MS Awareness is so important! In Canada May is MS Awareness Month and I’ve been sharing info, reels, and memes on Instagram stories, if you would like to see what I’ve been sharing, I made a highlight on my Instagram page. I HATE being vulnerable on social media but I feel like it is important to use this month to inform people about my disease. I’m not whining or complaining or looking for sympathy, I’m only trying to teach people so they can have empathy for people with chronic illnesses, like MS. I have received SO many messages from friends and family from past and present, thanking me for teaching them about MS and other chronic illnesses. Thanking me for using my voice to be THEIR voices if they suffer with a chronic illness too. Thank you to them! Thank you for making it ok to be vulnerable.
It’s hard for family and friends because they want help. My Sis and her family, along with my Dad, and Ninja and the Kids are participating in the MS Walk On May 24 and on Friday May 30 it is World MS Day. Feel free to click the link above if you would like to support Kathy & Kristin’s Krew.
I also read an amazing book this month written by an MSer from Toronto. Fallosophy: My Trip through Life with MS by Ardra Shephard Nonfiction Book About Health. The first MS influencer I followed or even knew existed lol was Ardra Shephard. My Sis sent me her blog Tripping On Air, early into my diagnosis and I saw someone who was Canadian, had MS, and could laugh about it. I knew she was my people. When she released her memoir in early 2025, I was on the waiting list to purchase a copy. It’s always hard reading about people with MS. It’s emotional. The first 7 pages in and I had to stop. It was her story, but it was also MY story. We were even diagnosed just a day apart. By page 8, she had me back laughing again! As she learns about her diagnosis and what it means, more parallels between our lives are formed. Our somewhat aversion to the MS Society and not wanting to be part of that club, she took a 3 times a week DMT that she injected herself and my Mom, who also had MS, injected herself daily, so I know all about that. There was a whole chapter on the CCSVI procedure. The author, like my Mom had it done. It was interesting reading about her experience as opposed to my Mom’s. I hope the people that have loved ones with MS will read this book because she explains a lot of what I’m feeling on a daily basis. She is recording right now as an audiobook and I bet that will be AWESOME! The only thing I found lacking in this book was fatigue. Fatigue and temperature sensitivities are touched on, but are so integral to the balance in the life of an MSer, or at least it is for me. I also loved the chapters, super short like little stories.
It is BBQ season! To be fair, it is always BBQ season where I live but I remember growing up in Winnipeg, where you just waited for the May long weekend because you knew BBQ hotdog, hamburgers, and ribs were in the near future! Well, Ninja has always been the GrillMaster and I have always been about the BBQ side dishes. These are 3 side dishes that are familiar but with little different twists that make these basic side dishes become AMAZING BBQ Side Dishes!
These Slow Cooker Baked Beans are the perfect side dish on a busy day out in the sun. I love my MIL’s Baked Beans, especially with Low & Slow Ribs, but it takes hours to make them in the oven! Leaving these baked beans in the slow cooker while you enjoy your day and then tossing some ribs on the BBQ when you get home? Yes! All types of, yes lol!
We love potato salad. Ninja’s Dad makes our favourite Potato Salad. I was looking for a side dish that was a bit lighter than our normal creamy potato salad and this French-Style Summer Potato Salad with Corn was exactly what I was looking for! It is light and full of the flavours of dill, sweet corn and mustard. This dish will be the perfect addition to any barbecue you attend this summer!
Macaroni salad is a hit and miss with us. We are not fans of most Mac salads. I like my Mom’s KD Mac Salad, KFC’s Mac Salad and now Guy Fieri’s Macaroni Salad. This was GOOD. It was almost like KFC but The magical ingredient is… Relish. Which really is a no-brainer because I mean every special sauce has relish in it right? Lol That’s what makes it special! This salad is delicious, thank you Guy Fieri!
Ingredients
6-8 strips uncooked bacon, diced
1 onion, diced
3 cloves garlic, minced
1 can pinto beans, rinsed and drained
1 can kidney beans, rinsed and drained
1 can white beans, rinsed and drained
½ cup ketchup
¼ cup molasses
¼ cup bbq sauce
½ cup packed brown sugar
1 tablespoon worcestershire sauce
½ tablespoon yellow mustard
Directions
Add diced bacon to a large skillet and place over medium heat, cook bacon until crispy and golden brown. Once bacon is done, blot with a paper towel to absorb excess grease. Allow bacon to cool.
Drain the bacon grease, leaving a little on the bottom of the pan and add in the diced onion, cooking for 5-8 minutes or until they are slightly golden. During the last minute of cooking, add in your garlic and cook for 1 min. Remove from heat and set aside.
Add the pinto, kidney and white beans to the slow cooker, then add in the bacon and onion/garlic. Next add in the ketchup, molasses, bbq sauce, brown sugar, Worcestershire and mustard. Stir until everything is well combined. Cook on high for 3-4 hours or low for 6-7 hours.
French-Style Summer Potato Salad with Corn
6
servings20
minutes15
minutesIngredients
2 lbs baby potatoes
salt and pepper
1 tablespoon apple cider vinegar
1 1/4 cups cooked corn kernels
1/2 cup green onions, sliced
- Dressing
2 1/2 tablespoons stone ground mustard
3 cloves garlic, minced
1/4 teaspoon salt & pepper
3 tablespoons rice wine vinegar
1 tablespoon apple cider vinegar
3 tablespoons olive oil
Directions
Rinse and scrub potatoes and slice into 1/4-inch slices. Add to a large saucepan and cover with cold water. Add salt and bring to a boil. Once boiling, reduce heat to medium/high and continue cooking for 10-13 minutes or until the potatoes are easily pierced with a knife.
Add mustard, garlic, salt, pepper, rice vinegar, and apple cider vinegar to a mixing bowl and whisk to combine, slowly whisk in olive oil.
Once the potatoes have finished cooking, drain and rinse with cold water. Once they’re dry, add to a large serving bowl. Season with salt and black pepper and 1 tablespoon apple cider vinegar. Add corn, green onions and dill.
Pour in the dressing and toss to combine. Taste the potato salad and adjust salt and pepper. Chill for 1 hour or longer.
Ingredients
2 cups elbow macaroni or small pasta
2 carrots, finely chopped
2 celery stalks, finely chopped
1 small red bell pepper, finely diced
½ cup red onion, finely diced
½ cup sweet pickle relish
- Dressing
1 cup mayonnaise
¼ cup sour cream
2 tablespoons Dijon mustard
2 tablespoons apple cider vinegar
1 teaspoon sugar
½ teaspoon paprika
½ teaspoon garlic powder
½ teaspoon onion powder
salt and pepper, to taste
Directions
Bring a large pot of salted water to a boil. Add the macaroni and cook according to the package instructions until al dente.
Drain the pasta and rinse under cold water. Transfer the pasta to a large mixing bowl.
Add the chopped vegetables and sweet pickle relish to the bowl with the pasta.
Whisk together mayonnaise, sour cream, Dijon mustard, apple cider vinegar, sugar, paprika, garlic powder, and onion powder. Taste and adjust with salt and pepper as needed.
Pour the dressing over the pasta and vegetables. Toss gently to combine, ensuring everything is evenly coated. Cover and refrigerate for at least 1–2 hours.
Before serving, give the salad a final toss and sprinkle with chopped parsley.
Check out How Was Your Week, Honey? Episode #426 Groceries Are Hard. This week, we get together to discuss: summer dating, Pop Up Video, Blue Jays in Seattle, French’s Ketchup, Stanley Cup Playoffs, Kiwanis Gala, Superstore, SOW, and fun songs.
Thank you to Miz Helen’s Country Cottage for featuring my Strawberry Crepes from my Mother’s Day post at the Full Plate Thursday Link Party. And thank you to French Ethereal and Coastal Bohemian for featuring my Mother’s Day Gift Guide on their weekly Share My Style Link Party and Funtastic Friday Link Party!
Well that was a week! It started with my infusion, midweek was for SBean’s final gymnastics competition of the year (placed 4th on bars and a personal best, 2nd on beam!), SBean also performed her M/T piece, 13, for the final time at the Kiwanis Festival highlights Gala, they had their finale/wind up dinner at The Hooded Merganser, and we ended with a wonderful Mother’s Day brunch at Kin & Folk.
6 thoughts on “MS Awareness Month & BBQ Side Dishes”
I loved this honest account of what really went on behind the scenes of that photo and will definitely be checking out that book; we have a close family member that was diagnosed with MS and while he’s always laughing and insists he’s doing great I know that isn’t always the case. He doesn’t usually share anything about his flare ups until after the fact and I’ve definitely been wanting to know more about what he’s really going through.
Thank you so much. My mom had MS and I lived with her and she never told us what was going on. Now that I live with it, I see all the red flags. Every time she leaned, all the time she smiled and said she was fine But now I know… however, every MSer is different! It all depends where his lesions are and what his symptoms are. The fact you are trying to empathize with him and his disease is amazing. I thank you for him! I am so lucky to have a family like that to support me too. Thank you for your comment.
Wow I’m so glad I stumbled on your post. I was diagnosed with MS a few years ago and my life has drastically changed but at the same time I know I am somewhat fortunate in the big scheme of things. I can relate to your story tho since I got covid a while back and I literally could not walk. It exacerbate all my symptoms so badly. It was a reality check to would could be or what might be in the future. Once it passed I was back to normal, well my new normal. I can totally relate to your story of the picture. I love the comment, “you don’t look like you have MS”. I know it’s meant in a good way, but all the implications behind the innocent comment are a dagger to my heart and ego. Anyway, I could go on forever. Just wanted to pop in and say hello. XO- MaryJo @masterpiecsofmylife.com
PS. stay strong! You got this! A key to the whole thing is having a good support system and it sounds like you do.
Yes! I feel the same way! Last summer when I was sick, I saw what it could be like and wow, eye opener. Most days I have fatigue, my left arm has spasticity, and brain fog but only if I overdo it, or I’m tired or I get too hot. It’s shocking to go from 30,000 steps a day to sometimes less than 1000! But you’re right, having a good support system is key! Thanks for stopping by and sharing a piece of your story with me.
A mutual friend sent me this blog. I am 73 and was diagnosed with “MS like symptoms” 5 years ago. I was physically active but noticed several weird symptoms after I retired at 68. I was shocked to receive the diagnoses, but also relieved to know what was going on. Because of my age, drug therapy was started. I am still able to garden, but on a limited scale. Raised beds, a garden scooter and a helpful husband and sister are my lifesavers. There are too many days that confine me to a chair for most of that day. Still working with my neurologist to get the mix of meds so I dont feel like im going to jump out of my skin. I didn’t know that there were people out there sharing MS lives. Thank you.
Thanks for sharing. I am so happy you are able to continue doing the things you love like gardening. My Mom had MS and also loved to garden. I sadly did not get her green thumb. My husband and sister have been a huge help to me too. Stop by again anytime 😊.