While I was getting my infusion last week, I was scrolling and saw a post from @multiplesclerosis.awareness asking the question, “How has MS changed me?” It got me thinking, how has MS changed my life?
Well I guess I’ve slowed down a lot. I don’t care if the house is messy. I talk less because it takes so much energy to vocalize something. That’s why going out is so hard, the socializing. I talk too much and I don’t know how to be any other way. One good thing though, I spend a lot less money because I don’t go out as much. I mean even shopping, running to Walmart for “a few things”. I really weigh everything now, is it worth it? Do I really need to go out and get that? Can I do without?
Where some people might assume that they would count each day as a blessing after a life altering chronic illness diagnosis, I am not one of those people. I do not take each day by the horns and show it who’s boss. I carefully plan each day so that, I will have many days in the future, hopefully not in a wheelchair or worse. I have chosen to give myself the space to not live like every day is my last. It’s a marathon, not a race.
Some people say I have MS… But it doesn’t have me. I am also not that person lol I have MS and it has a huge grip on my life and to say it doesn’t would be only fooling myself. I guess, I’m more realistic now. I know I’m never going to be an Olympic athlete, lol. I know I will probably never learn to snowboard, I will never knit the perfect socks, and although I have my fingers crossed that someday, I will be able to hike to the top of Giant’s Head again, I know that that is a wish, not a goal. I hope that I will be able to do that again, but if I don’t, I am not going to be disappointed, I will find something else that I am able to do, that is just as satisfying!
I have MS. MS has me. We are one and the same. Just as I am a daughter, a wife, a mother, a sister, and a friend, I am a MSer.
I used to get so mad at my Mom when she would say that! Because I couldn’t see it, I didn’t understand why she made a point of reminding us all the time. I didn’t realize until now, that every second of the day she was probably thinking about MS. I am thinking about MS. I have no choice. I wake up in the middle of the night and I can’t feel my left side. There’s never a moment in the day where I feel normal or like I did before MS. Never. Every single little thing I do, I have to think about how I’m going to do it, how it’s going to make me feel, and how things will be after I do that thing. Even the bathroom. Every. Single. Thing. Takes. Effort. I can’t just pick up my coffee cup without thinking because I will drop it. I have to put my entire focus on picking up the mug and putting it to my mouth and then putting it back onto the table. Or there will be an accident.
I know this isn’t how all people with MS think. Some people don’t have as many symptoms as I do, they still have “normalcy“ in their lives. I don’t. I constantly have to check in and take stock of how my body is doing. No matter what I do, there’s always the risk of being unable to finish the task at hand. I have to say to myself, “if I take the dog for a walk, will I have the strength to get back home?” When you have to prepare, you have fear of whether or not you will be able to do the activity until the end, and, you have to face doing all that with constant pain… You end up not doing it. Or leaving the house. Or even leaving the bed. Everything seems overwhelming, especially when you have brain fog! When you can’t make a decision to save your life and you can’t even follow the directions of a recipe… you throw up your hands and say I’ll try again tomorrow.
And I mean simple things like mascara lol ever tried putting on mascara with numb hands? How about bringing a cup of hot coffee to your face lol if you can’t feel the cup, you can go pretty fast and slosh, burning hot coffee all over you, not that I can feel it, lol until later, when the burn blisters appear! And I’m just warning you, never cheers me because I have no idea how fast or how hard I’m coming in and there have been many wine glass broken within my grasp. I’m absolutely petrified of going into stores with glass items on the shelves, can’t reach into the refrigerator anymore because my clumsy hands that feel like they are wrapped up in giant mittens, knock everything in their way over, without meaning to at all. I can’t even touch anything in a freezer because as soon as my hands get cold, they turn black and blue and the pain is excruciating. I would say unbearable, but since MS, I’ve realized there really is no such thing as unbearable. No matter how bad it is you still have to bear with it.
How has MS changed me? My hair is thinning and falling out by the handful, my teeth are loose, and I have trouble manoeuvring the toothbrush and dental floss to do a decent job. I bite my nails constantly, even though my fingers are stiff & in pain, I gnaw on them until they’re so short they bleed. I also have trouble differentiating between the different pains in my body. Every morning before I get out of bed, I do a self check, how am I feeling today? Usually it’s constant vibration and a low-grade hum of pain. If something is overriding my MS normal day to day pain… That’s bad! I don’t know how bad, I just know that it’s a pain greater than my normal pain. Every once in a while, I will press on a bruise that I didn’t know I had, or my nail has been bitten to the quick, or I stub my toe, cut myself dicing peppers, or burn myself on the stove. The pain will be bigger than normal, but is still dulled by the constant white noise of the MS.
I am black and blue. Actually more green and yellow but you get what I’m saying. I am one big massive bruise! Where do they come from? I have no idea! Yes, I bang into things, yes, I have zero depth perception, yes, some times the left side of my face goes numb and I am unable to see things clearly out of my left eye, so I miscalculate openings, yes, my foot feels like it is attached to my leg but I have no feeling of an ankle so I sometimes trip over my dragging left foot, or flip-flops, or long pants, or the dog, or the area rug, but seriously, how do you get a bruise on the inside of your calf? That’s the size of a giant grapefruit? I don’t know if I’ll be able to wear tank tops this summer, because it looks like I get beaten at home! Don’t even get me started on my toenails! I am unable to get pedicures anymore, because, the trauma of someone using pedicure tools on my little toes, leaves pools of blood under my nails as new nails grow in! I’m not kidding!
I am constantly grieving the life I planned for. The life I thought I would have. Just when I come to terms with everything, the grief smacks me in the face again. It’s a cyclical kind of thing. The day after my infusion was my 45th birthday. I was feeling pretty awful. All these people are wishing me a great day while I am laying in bed in a shit ton of pain, dealing with hot flashes, a pounding headache, and the pain of feeling coming back into parts of my body that haven’t felt anything in months. I felt terrible posting how awful I was feeling when all anybody wants for you to do is have a good day. But I had to and have to keep it real. Nobody talks about chronic illness! My Mom had MS and I had no idea what she went through on a daily basis, until now. It wasn’t even real to me back then! She looked perfectly fine, she kept doing all the things that she did before… Well, all the things she did for me at least. I told myself I was going to be more real. Show the real side of MS. Some hours are good. Some days are great. Others suck.
There is no way and nothing in my life that is better now because I have MS. However, I have a different perspective on life. I have a shit ton more empathy for people now! I also am very careful with who I give my spoons to, and have started understanding that you have to keep some of them for yourself.
So, after a week of dentist, my infusion, my birthday, and generally just feeling like crap lol these are my thoughts. The “wisdom” of a newly 45-year-old MSer just trying to figure it all out. However, check back in a few years, because even today, exactly a week after my infusion, the fog has temporarily lifted and I feel more clear and able to cope with what I have been dealt by the Dealer in the game of Life. Everything looks better when the fatigue lifts and you can breathe more easily, at least for now.
Guess what’s coming up? Cinco de Mayo! I have never been to Mexico, but I absolutely love Mexican food! My love affair with fresh Mexican food began at a young age. There was a Mexican restaurant on Main Street here in Penticton that gave each table freshly fried tortilla chips with fresh pico de gallo. Instant. Love. The affair continued when I graduated high school and took a trip to New Mexico. I stayed with locals who took me to the best Mexican restaurants to try all different types of Mexican dishes! I love them all! Me and my family have been taste testing different taco recipes over the last few weeks to find a few of our favorites , so you can enjoy Cinco de Mayo the best way possible… By eating! Click the taco below to take you directly to the recipe!
Ninja‘s favourite type of taco is a ground beef taco in a hard shell. Basic and boring lol. I found this recipe for Crunchy Baked Beef Tacos which takes ninjas basic taco up a whole new level! By simply baking the tacos in their soft shells, it achieves the crispiness that ninja craves plus The taste that I prefer and let’s face it, it’s not a stale basic hard taco shell out of a box.
We also tried Cilantro Lime Chicken Tacos. My entire family, including myself hates avocados, but, toss it in a NutriBullet with some Greek yogurt and call it crema and we are lapping this stuff up! Lol These tacos were a party in our mouths. Lots of different textures, creaminess, and all that lime flavour! A burst of springtime in your mouth!
I love pineapple with pork so we tried Pork Tacos with Pineapple Salsa and they were sweet, savoury, and a little spicy! SBean asked if I could make the pineapple salsa for her school lunch the next week lol. SUPER easy and SUPER tasty!
One of my favourite local craft breweries Neighbourhood, have delicious Mexican menu. My favourite items are the Portlandia burrito which is a bean burrito but weirder lol and the corn salad or elote. This is the closest thing that I have had to both of those, and this could be my new favourite taco, ever! We made Bean Tacos with a Corn Salad and quick pickled onions for the win!
Ingredients
3-4 tablespoons oil, separated
1 white onion, finely diced and separated
1 lb ground beef
1 teaspoon salt
1/2 teaspoon pepper
1/2 teaspoon chili powder
1/2 teaspoon garlic powder
1/2 teaspoon onion powder
1/2 teaspoon ground cumin
1/2 teaspoon dried oregano
1 can diced green chiles
1 tablespoon tomato paste
4-8 flour tortillas
1 cup cheddar cheese, shredded
1/2 cup lettuce, shredded
4 roma tomatoes, seeded and diced small
1/4 cup cilantro, chopped
2 tablespoons lime juice
Directions
Preheat the oven to 400℉ and spray a baking sheet with oil.
Heat a large skillet over medium high heat with 1 tablespoon of oil. Add the 1/4 cup of onions, ground beef, salt and pepper and cook, breaking up the meat, until it is cooked through and no longer pink, about 7 minutes. Drain off any excess fat, but reserve about 2 tablespoons in the pan.
Add the chili powder, garlic powder, onion powder, cumin, and oregano and cook, stirring until spices are fragrant and incorporated into the meat, 1 to 2 minutes.
Pour in the diced green chiles (undrained) and the tomato paste into the meat and toss until well combined with the meat and there are no lumps.
Remove from heat, cover, and keep the meat mixture warm while you prepare the tortillas.
In a small, separate non-stick skillet, heat 1/2 tsp of oil over medium-high heat and quickly fry 1 tortilla (about 30 seconds on each side) until flexible and easy to fold. Set the tortilla on the prepared baking sheet and scoop about 2 tablespoons of beef onto one side of the tortilla.
Sprinkle about 2 tablespoon of cheese onto the beef then gently fold the tortilla in half, forming a taco. Continue frying, filling, and folding the tacos (adding more oil to the skillet as needed) until you’ve used all the filling.
If for some reason the tops of your tortillas look dry, spray with oil. Transfer the baking sheet to the preheated oven and cook until the tacos are crispy and golden browned on the edges, about 10 minutes.
Mix together tomatoes, rest of diced onion and cilantro. Top with an lime juice and salt and pepper to taste.
Remove tacos from the oven and let cool just until you can handle the tacos. Gently open the tacos to fill with the lettuce, and fresh Pico (tomatoes and onion mixture).
Cilantro Lime Chicken Tacos
4-6
servings4
hours10
minutes5
minutesIngredients
2-3 chicken breasts
1/4 teaspoon salt
4-6 flour tortillas
Juice of 2 limes + zest of 1 lime
4 tablespoons oil, separated
3 cloves garlic, minced & separated
1 1/2 teaspoon honey, divided
2 cups shredded coleslaw
3/4 cup + 2 tablespoons cilantro, chopped
4 green onions, chopped & separated
1 avocado
1/4 cup plain Greek yogurt
3 tablespoons lime juice
1 teaspoon Sriracha
1/4 to 1/2 cup water, depending on consistency
Directions
Place chicken in a large ziplock bag or bowl. Whisk together juice of 1 lime, lime zest, 1 tablespoon olive oil, garlic, 1/2 teaspoon honey, and 2 tablespoons cilantro until combined and pour over top of chicken until completely coated. Cover and marinate chicken for about 4 hours to overnight.
Combine coleslaw, green onions and 1/2 cup cilantro in a large bowl. In a smaller bowl, whisk together juice of 1 lime, 1 tablespoon olive oil, 1 teaspoon honey and salt and toss together with slaw mixture.
Combine the avocado, 2 tablespoons of oil, 1 clove of garlic, 1/4 cup cilantro, yogurt, 3 tablespoons of lime juice, sriracha and salt/pepper in a food processor and pulse until combined. Add water until smooth until you have your desired consistency.
Cut marinated chicken into long slices. Add chicken to a pan on medium-high heat. Sprinkle with a little salt and cook chicken about 4 to 5 minutes on each side until juices run clear. Transfer chicken to a cutting board and let rest for 5 minutes.
Place chicken in a tortilla and top with slaw and a drizzle of the avocado crema.
Ingredients
1 clove garlic, minced
4 tablespoons soy sauce
¼ teaspoon red pepper flakes
2 tablespoons brown sugar
1 tablespoon oil
2 tablespoons water
1 small boneless pork loin, thinly sliced into strips
4-6 soft tortillas, corn or flour
1 cup diced pineapple
½ red onion, diced
1 bunch cilantro, chopped
1 cucumber, peeled and diced
salt to taste
3 tablespoons mayo
1 tablespoon sriracha sauce
Directions
Combine diced pineapple, red onion, diced, 1 handful of cilantro, diced cucumber and juice of one lime. Season with salt to taste. Stir, and set aside. Whisk together garlic, soy sauce, red pepper flakes, water and brown sugar, set aside. Stir together mayo and sriracha, set aside.
Over medium high heat, drizzle a pan with oil, then add pork strips and saute 2-3 minutes until no longer pink on the outside. Add soy sauce mixture to the pan and stir once, then let the pork caramelize by not stirring for about a minute. Stir again, then rest for another minute. Repeat until pork is browned and caramelized on the outside.
Fill tortillas with pork, top with the pineapple salsa and drizzle with chili sauce. Garnish with chopped cilantro and a squeeze of lime juice..
Ingredients
2 tablespoons oil
2 cans pinto beans, drained and rinsed
1 packet taco seasoning
1 lime, juiced & divided
1 cup corn
1 small red onion, 1/2 diced & 1/2 sliced
1 jalapeño, diced
4 tablespoons cilantro, chopped & divided
1/2 teaspoon garlic powder
2 tablespoons mayo
2 tablespoons Greek yogurt
4-6 tortillas
a few leaves lettuce, chopped
1/4 cup vinegar
1/4 cup water
1 tablespoon sugar
1 teaspoon salt
Directions
Place the sliced onion in a heat-proof container. Add the water, vinegar, sugar and salt to a small saucepan and bring to a boil. Lower heat and stir until the sugar and salt have dissolved. Turn off the heat. Pour the liquid over the sliced onions and press them down with a fork. Cover and allow to come to room temperature for 30 minutes.
Heat the oil in a skillet and add the beans, taco seasoning and 1/2 cup of water. Bring to a boil, lower the heat and simmer for 10 minutes. If the beans start to dry out, you can add a little more water. Right before serving, add lime juice and a pinch of cilantro.
Combine the corn, diced red onion, jalapeño, 2 tablespoons cilantro, 1/2 lime juiced, garlic powder, mayo and Greek yogurt in a bowl and toss to combine. Taste and adjust the seasonings as needed. Set aside.
To assemble, layer each warm tortilla with lettuce, corn salad, beans, pickled onions and more cilantro. Serve with a squeeze of lime.
Check out How Was Your Week, Honey? Episode #377: Two Oceans This week, we get together after a rough few days following my infusion. Topics: Billy Ocean, family aging, Kristin’s birthday, hosting, Syd stories, 420, SOW, Taylor’s new album, & continued education.
This week was a shit show lol. Although there was something happening every day, absolutely nothing happened this week. On Monday I had my last dentist appointment and got my last filling fixed. Thank goodness that’s all done with! On Tuesday, I had my infusion, and on Wednesday, it was my birthday! Although I was in bed recovering from my biannual infusion, Ninja and the kids still managed to make it incredibly special! My WREBesty sent me a beautiful bouquet of flowers, Ninja brought me home my favourite egg salad sandwich from The Bench, flowers, Starbucks, and my absolute favourite lasagna from La Casa Ouzeria! He also got me a beautiful yellow butterfly balloon and put it up right outside my bedroom door so I could see it and it would make me smile. My Dad came up while they all showered me with amazing gifts and the best no bake cherry cheesecake ever (recipe to come later)! I was spoiled rotten with homemade gifts, a ridiculously cool sleep mask, an electric toothbrush, a water pick, an articulating laptop/book holder, a new blanket, and the most amazing bedsheets ever! They are from Cozy Earth and they are amazeballs!
On Thursday and pretty much for the rest of the weekend, I was recuperating in bed but SBean and Hear continued with school and activities while Oliver hung out with me. This weekend, my Sis had everybody over to try out their new pizza oven and on Sunday, we went to Ninja‘s parents for dinner and more birthday cheesecake! Monday was a pro-d day, and the Kids helped me get the house in order, opened up the new Ipsy bag, and went thrift shopping with friends! The hockey season has ended and so has our Pod Pool and our family hockey pool is over! Ninja and I didn’t come close (I came in 4th) in the Pod Pool but congratulations to Ninja for taking home first place, my FIL for taking second and my Dad for taking third! Next year I’m coming for you all!
2 thoughts on “MS Thoughts on My Birthday PLUS Cinco de Mayo Tacos”
Your tacos look amazing. Congratulations, you are being featured on TFT. I hope you stop by. https://www.eclecticredbarn.com/2024/05/cinco-de-mayo-recipes-on-tft.html
Hugs,
Bev
Wow! That’s fantastic! Thank you so much.