Herbie on His Back

Some days we move slow and steady, other days our world is turned upside down and we're stuck on our back

The World of Comic Books

Reading is my favorite way to pass the time and looking at old comic books is always fun!

Healthy Cooking

In an attempt to eat healthier, we're cooking with ingredients never seen before in my pantry

My walker is my new best friend

Not an easy truth to swallow, but I'm grateful that I can still use one

Enjoy the little things

It's easy to get caught up in the struggles of everyday life, but don't forget to have some fun!

Saturday, May 12, 2018

Mother's Day Crafting

Mother’s Day is tomorrow and we all know what that means - homemade gifts are coming! My children have given me candles with their messages & drawings stuck on, flower pots, hand print creations, paintings, macaroni art, and some of the other traditional crafts. I love them, but most of them end up in storage somewhere. My household is full of nerds & we will proudly tell anyone that this is a fact, so I thought we could come up with a nerdy craft for the kids & I to make together for their grandmother this year that wouldn’t collect dust. Most recently, my kids have gotten into Harry Potter. I know he’s been around for awhile, but can anyone really get tired of the magic? Turtle Mae is a Hufflepuff like her momma, but Turtle Monroe joined their grandmother in Slytherin (this does not bode well for her teen years - eek!). Both of my girls said we had to do something Harry Potter themed.

After spending way too much time browsing Pinterest, we decided on bath bombs in house colors. I borrowed from a few different posts to create our final recipe & we all loved the idea of putting them inside the mini plastic cauldrons. Grandma gets green for Slytherin, but we have to make some for us to play with as well of course! I had everything ready over a month ago, but I'm a true procrastinator & put it off until last minute. Yesterday was the day I realized I do not have another week like I thought I did so we finally got to work. I now have baking soda and mica powder everywhere, but the kitchen smells good & the bath bombs look great!

If you’d like to make your own, simply use the recipe below. The choice of food coloring and essential oil scent is up to you & helps make each bath bomb unique. After packing the cauldron halfway, you may also add a necklace, charm, pin, or other small item before adding more on top so that the recipient finds an added surprise. If your kids are in to Shopkins, those little plastic balls they come in are perfect for placing your hidden gift inside. Enjoy our pictures & have fun making your own whether they’re for a gift or a much deserved evening of pampering yourself!

What You'll Need:
3-4 Mini Plastic Cauldrons
1 cup baking soda
1/2 cup citric acid
1/2 cup epsom salt
3 Tbsp avocado oil
2 tsp essential oil
10 drops liquid dye for soap (use 5 drops each if mixing colors)

mica powder (your choice of color)
isopropyl alcohol

In a large bowl, mix the baking soda, citric acid, and epsom salt together. Make sure to remove all clumps (you can press them through a sifter if that's easier). If it is not well blended, your bath bombs may develop bumps on top.

In a small bowl, stir together your liquid ingredients. Be careful not to add too much color or you may end up staining the bathtub!

There are different ideas on the best way to add the liquid to the dry ingredients. Some prefer to put the liquid in a spray bottle and squirt a small amount at a time while using their hands to mix everything together. Some dump it all & then stir quickly before it fizzes up. I don't have the patience to use the spray bottle & I've always ended up with a fizzy mess when I add everything, so I pour a small amount of liquid at a time into the dry and mix quickly. This is also a good way to prevent your bath bomb mixture from being too wet which will cause cracking or crumbling later. The best consistency is like damp sand. You want it to hold when squeezed together and not crumble apart.

Using a small spatula or spreader, scoop a bit of the mixture at a time into the cauldron & pack it in firmly before adding the next scoop. If you are adding a hidden surprise, once the cauldron is about 1/3 full, pack some of the mixture on the sides and then drop it in the middle. Scoop more of the mixture on all sides of the surprise and pack it down before finishing filling the cauldron.

Allow your bath bomb to dry overnight. If you'd like to add some sparkle (makes it look magical!), add some isopropyl alcohol to a small spray bottle and spritz the tops of your cauldron. Dip your finger in the mica powder (you may want to use a glove for this step), and rub it gently on your bath bomb. You can add some white pearl mica to make it look a bit more swirly. Allow it to dry a bit more and then wrap your bath bomb in plastic wrap or use a small heat shrink bag to seal it up and keep moisture out until it is ready to use. Ta-da! Potions class dismissed!

Saturday, May 5, 2018

Lesson Learned (Follow up to Scary Night)

It seems no matter how many articles I’ve read about MS, there’s always something new to learn. Several of you read my post about last week’s scary night, but I now have some not-quite-so-scary answers.

Even though I called my neurologist’s office the very next morning, my appointment was made for nearly a full week later. When I was discussing with my doctor what I had experienced, she stopped me and looked at me like I was crazy. “This was Thursday? Why didn’t you see someone immediately?” I had no idea that’s what I was supposed to do. There didn’t seem to be too much concern when I called and I really didn’t know what they could possibly do for me anyway. Besides, I was sure it was my MS and I was slowly improving again so I wasn’t too worried once my ability to move and speak returned. Apparently, this is unacceptable. Who knew?

Before I explain what actually happened, it’s important to know what a relapse officially is. I am in no way, shape, or form a doctor, but I'll give you my understanding of how things work. When you have a new or worsening symptom that lasts at least 24 hours that can’t be explained (like overheating or pushing yourself too hard) and is likely accompanied by new lesion formations, that’s a relapse. There is no one spot in the brain, spine, or anywhere else in the body that controls everything where a new lesion could form and take several functions out at once, so what I experienced was not an actual relapse as I originally thought. It was, however, what they call a pseudo relapse.

MS damages the myelin sheath of the nerves so they work about as well as this cord does
A pseudo relapse can be a good thing because it means MS is not progressing, but if the underlying cause is an infection (most likely if there are no large stressors at the time) it may trigger an actual relapse if left untreated. I was completely unaware there was such a thing & had no clue what that meant. My doctor explained that when you have an infection, your body is using a lot of energy to fight it off and that most people without MS may feel tired, but can still power through. When we have damaged pathways because of MS, our body uses extra energy in its attempt to push signals along these paths and sometimes it is forced to make the choice between continuing to use excess energy to force the signals or focus on healing the rest of the body. When it chooses the latter, you have a pseudo relapse.

Pseudo relapses are frequently more difficult to deal with than an actual relapse simply because you’re dealing with more symptoms at once. During a true relapse, you may have blurred vision, difficulty using your right arm, or slurred speech; basically you’re just dealing with one or two issues. During a pseudo relapse, any problems caused by your lesions in the past may hit all at once which was my case last week. It’s much more difficult to function and recover. When it hits, you are to immediately go to the neurologist, primary care physician, or ER to get a urinalysis & bloodwork to determine the type of infection and get it treated quickly to prevent further damage. Clearly, I didn’t do that.

The good news for me was that even though my doctor said 9 times out of 10 in women a pseudo relapse is caused by a urinary tract infection, it was not the cause of mine or I would’ve been in the hospital days ago since they don’t go away on their own. After some discussion, we decided mine was most likely triggered by a stomach bug. I had been over it for about a week by the time my pseudo relapse hit, but I had the infection for over a week before getting better. She said my body just needed to take a break to catch up from my trying to power through the illness. In her “I’m so disappointed in you” mom voice, my doctor scolded me for not taking time off work and resting enough during that week and a half. I had to promise that from now on, whenever I have a fever, vomiting, or diarrhea I will not wait it out with optimism that it will soon go away on its own. Instead, I will make an appointment with my primary care physician the first  day of symptoms and remain off work with lots of rest for the duration of whatever bug someone (usually my kids) decide to share with me. Ugh.

For now, I’m speaking normally and moving around much easier, albeit more slowly than I was a few weeks ago. I’ll make sure to always have hand sanitizer nearby and try to avoid getting sick as much as possible. I was overwhelmed by the number of people who read my post about last Thursday evening and appreciate all the private messages expressing concern and encouragement! You guys are amazing! I have a knack for annoying my doctors, family, and coworkers with my stubbornness, but I will do my best to behave (mostly) and rest a bit more when illness strikes to prevent this in the future.

Occasionally, I may need to retreat into my shell and take a nap

Wednesday, May 2, 2018

🎶Take Me Out To The Ball Game🎶

It won’t take you long to figure out that we are a family that loves going to sporting events. Whether it’s NFL, NBA, Major League Lacrosse, Minor League Baseball, or just our school’s teams if we’re not watching from the couch, you can find us in the stands cheering loudly for the home team!

A few years ago, I thought going to a game with young kids was difficult. The diaper bag has to be big enough to hold everything, but the stadium only allows clear bags so you frantically search the house for that tote bag you got from Bath & Body Works two summers ago because it’s the only clear tote you have. Don’t forget the snacks for the toddler - you know she’ll be hungry 5 minutes after you sit down, but make sure it doesn’t look like anything an adult would want to snack on because those aren’t allowed. Oh, you actually wanted to watch the game? Hahahahaha! You’ll be running up & down the steps & making multiple laps around the concourse because the kids have learned that if they say they have to go potty, they don’t have to sit still in the plastic seat anymore. I am so very, very, very glad that we were well past that stage by the time my MS symptoms decided to appear. To those of you who are dealing with both scenarios at once, know that you are a superhero & I am absolutely amazed by you!!!

Nowadays attending games has lead to a new world of difficulties I had never considered before. Since MS is unpredictable, I’m never sure if I will be walking in with no assistive devices (SSSSHHHHH!!!! Don’t tell my doctors!), a rollator (a walker with a seat to rest on & I’m lucky enough that mine converts to a wheelchair if I get too tired), or a standard wheelchair. Soon, I will also be throwing a powerchair into the mix because I don’t have enough assistive devices taking up space in my home already. Anyway, it makes purchasing tickets a bit more challenging. Do I need to purchase handicap seats, do I buy a ticket near the top so I have a place nearby to put my device, or do I hope for a fantastic day & just blindly pick the best available cheap seats? Fortunately, I’ve learned that I have stressed about this way more than I needed to because at every stadium we’ve gone to the staff have been super helpful!

After making calls before buying our tickets at each stadium, I’ve learned that no matter what seats we purchase, they will make accommodations depending on how I’m doing and I’m always amazed at how nice everyone is. If I can’t handle the steps to my seat that day, there are usually handicap seats in reserve or a few seats available in the nosebleed section. Most ticket sales offices have told me to simply purchase the best available cheap seats & if I need to make changes to handicap seating, I can call before the game and they will change it. If I forget to do so (my memory is absolutely terrible), and I show up in my wheelchair, the staff that help you find your seats suggest alternatives & show us where to go. When we purchased season tickets, I expressed concerns after the purchase was made & they made sure our seats were in the upper row closest to the handicap section. If I can manage the 3 steps to my seat, my hubby parks the rollator in the handicap section for safekeeping & joins me. If it’s a particularly rough day, I’m wheeled to the handicap section & they bring seats for the rest of my family.

Watching for that homerun ball to head our way
Weather is another factor that I never considered before other than to wonder if I packed enough sunscreen or needed jackets. Temperature is a common trigger for MS symptoms. If it’s too hot or too cold I may be able to make it to my seat, but I will have one heck of a time making it back up the stairs. So far I’ve been lucky & the only thing I’ve noticed with heat is that I can’t do hot tubs anymore, but cold is a major game changer. For those of you with heat sensitivity, I’m told cooling vests are amazing! The first NFL game we went to after my diagnosis was incredibly cold. I had no trouble walking down the steps to our lower level seats (well, no more than usual anyway), but when it came time to leave I could not get my legs to cooperate at all. My left leg kept collapsing and neither wanted to move. Fortunately, we were with a group and had plenty of people to help me get up, but I was terribly embarrassed. If it’s even slightly chilly, I’m bringing a coat to wear over my sweatshirt and I’ve got a blanket to cover my legs. I try to save as much energy as possible the day before and day of the game so I have enough spoons left for fun (see my Spoon Theory post if you're not sure what that means) and then make sure to enjoy the moment. It’s still tricky sometimes, but at least I feel more prepared.

Great seats, but so cold!!!
Our kids are older, but some things never change. They still say they’re hungry or thirsty five minutes after we sit down, and Turtle Monroe is still young enough to get fidgety if the game isn’t as exciting as she’d like. There are still moments where we don’t get to actually watch as much of the game as we’d like because we’re trying to keep an eye on them a row or 2 away while they’re sitting with friends. Despite the challenges associated with attending, I wouldn’t miss out on these memories - they’re too much fun! The kids dance to the music, we learn all the cheers & shout with the crowd, and it’s always big grins & high fives when our team scores. I love that even though my mobility has changed, we can still make our way into the stadium to root for the home team!

Saturday, April 28, 2018

Surviving A Sleepover

Imagine having the scary night described in my previous post followed by a 10yo sleepover the next day. Yep. That was my weekend and, even though I’m pretty beat at this point, it wasn’t terrible. Careful planning is key when you’re having difficulty speaking and any movement is exhausting, but we pulled it off and the kids had fun.

Turtle Mae’s friend joined us yesterday after school for a sleepover and I knew it would be a challenge, but was determined not to disappoint the girls. The biggest concern was how to keep 3 girls occupied, happy, and fed while I could lounge on the couch and recover. I spent the morning and afternoon on the phone with various nurses because I promised I would call my primary care physician (PCP) & neurologist if anything changed which led to frequent callbacks throughout the day. Mostly though, I called because my mom & sister kept calling and texting until I did just that. The good news was that they didn’t want me to come in that day, but I am scheduled for next week tentatively and some of my medications were adjusted. The sleepover wouldn’t be derailed by a visit to the hospital for an MRI - one less worry taken care of.

Next up, food. Depending on their mood they can eat just a small amount or my entire food supply and it’s difficult to tell until the festivities start. I went online and scheduled delivery of a couple pizzas & sides, made sure the cupboards had plenty of snacks, and my hubby did the dishes so we would have plenty to dirty up again. I figured they could munch on pizza, popcorn, granola bars, chicken nuggets, sandwiches, fruit, carrots, cheese, and cereal without me having to cook. Done.

Delivery is a lifesaver when fatigue kicks in before a sleepover!

We already had our tickets to the Hounds, so I purchased an extra one right next to us and my hubby pulled out cash for treats at the game. We’ve got tons of movies and also an Amazon Fire Stick with lots of options so they would have plenty to keep them occupied for the evening. Batteries were placed in the Nerf squirt guns, cookie dough was thawed, hoverboards and video game controllers were charged, and we’re fortunate to have a swingset and woods to explore so that would be enough to keep them busy until her mother picked her up the next day. We were ready.

Ready for the game!

The only thing I wasn’t prepared for was just how much energy 3 young girls can have when they’re excited. How could I forget the late night shenanigans my friends & I had when we did sleepovers??? The shrieks, giggles, and running through the house and all the chaos that creates with 2 dogs did not help my headache, but they were having lots of fun and not really hurting anything. I’m definitely not going to shut down the memories being made since it’s not every day that a friend stays over, but I did send them outside several times when things got a bit too loud so I could keep my sanity and my poor hubby could get some sleep after working third shift.

Beautiful night for a game!

The kids cheered for the win, ate their fill, wore themselves out, and are already planning their next sleepover. I’m tired, but I regained my ability to speak without concentrating extra hard and will be returning to work tomorrow. We survived the weekend! I’m going to celebrate this by taking my medication, crawling upstairs to bed, and snuggling with the dog as I snore away my physical exhaustion. I was told I should cancel the sleepover and even stay home from the game, but I would’ve missed out on all the smiles & laughter. Either way I would be sitting down, so why not sit and watch the fun instead of skipping out on it entirely and feeling sorry for myself? Easy choice! Are there any tricks I overlooked? Feel free to let me know any extra secrets to surviving sleepovers so I can use them later!

Scary Night

Alright guys. It’s tough to admit to the reality of things when they get bad, but the whole point of this blog is to be open & share my experiences so I’ll take a deep breath & do just that. Last night was scary. Definitely an upside down turtle kind of day. I had been feeling physically exhausted the past few days, but pushed through small tasks here & there just so I wasn’t sitting around every day. Not too much, but better than nothing so I wouldn’t tell myself I was just being lazy. Yesterday I did the same and cleaned the litter box, then scrubbed the floor underneath while taking breaks to rest. I spent a lot of the day lying on the couch, but by evening I was feeling pretty foggy & just out of it and told my hubby. An hour or so later, I tried to ask him if he had any dinner ideas for the kids because I was too tired to cook much, but I couldn’t get any words to come out and just made odd grunts. I tried to get up and found that my arms & legs felt like they weighed 1,000lbs each and I couldn’t budge them. My muscles felt tight, but absolutely refused to move. I was trapped and unable to communicate with anyone. Scary.

Fortunately, my hubby was able to call off of his third shift duties and stay home to help out. He cooked dinner, made sure the kids did their homework & were ready for school in the morning, made me comfortable, fixed me something to eat when I regained some use of my left arm a few hours later, and carried me upstairs to bed. This morning he helped the kids get ready & made sure I was comfortable downstairs before taking a nap since he’s working tonight. I’m so lucky to have him!

With concentration and effort, I am able to stumble slowly to where I need to go. I’m exhausted and sore, but I can communicate. Turtle Monroe, who tried to teach me to speak again last night (say “you” Mom, that’s an easy word: Yuh-eeeeeeeww), has already mentioned something about it to her teacher this morning and Turtle Mae spoke about it with her grandma on the way to school. I feel bad for upsetting them and I knew they were worried last night, but I couldn’t tell them I was fine or that it would be ok. I couldn’t even give them hugs. What kind of a mom can’t comfort her own kids?

If I’m truly honest with myself, it scared me a bit too. Is this a glimpse into what my future will be? How much will I actually recover from this relapse and how much is permanent? How can I be prepared if it happens again? In the past 2 years I have already lost so much of my independence, how much more will be gone in the next 2 years? So many questions without clear answers, but I have to trust that it will be okay. Take some deep breaths and focus on the positive.

The sun is shining this morning. We have tickets to the Charlotte Hounds game tonight. My family members are safe & healthy. I am able to move and speak and smile. It could be worse, but it’s not. I could choose to worry about a future I can’t control and drive myself to a mental breakdown by focusing on the what ifs, but instead I will use yesterday as a reminder. As cliche as it sounds, each day truly is a gift to enjoy and even when I’m exhausted there is still good to be found. Last night was rough, but I am lucky enough to be surrounded by a loving family and good friends to help me through the bad days until the clouds lift and the sun shines again. I am blessed and everything will be fine. No worries! How do you stay focused on the positives when the negativity starts closing in on your thoughts?

Wednesday, April 18, 2018

Fun With Spoons

Check out this lovely necklace made for me by my awesome friend Andrea at Purple Dragonfly!

Have you heard of the Spoon Theory? It was originally written by Christine Miserandino, a young lady with lupus, who took spoons from nearby tables to serve as a visual aid when asked by her friend about daily life. She had her friend describe their daily events & removed a spoon for each task. People with MS or some other chronic conditions have adopted it to give others an idea of what life is like for us. Basically we all start with a specific number of spoons of energy, sometimes less & sometimes more, but those of us with a chronic illness always need to be conscious of how many spoons we have for the day & how we will use them. Getting a shower = 2 spoons, eating breakfast =1 spoon, going to work = 4 spoons, etc. Depending on the individual and the type of day they're having, the number of spoons used for each task varies, but once your spoons are gone they're gone. You may borrow from tomorrow's spoons, but you will have less for the next day. This just means that if we're going on an outing for the day, I need to rest up the day before or the day after because, odds are, my daily ration of spoons will not be enough. With careful planning, I can usually get a few tasks in & still have enough spoons for fun! For more detailed info on the Spoon Theory, read Christine's post.

Even though I have to be careful how I use my spoons, I still have lots of fun! I may not be able to chase my kids around in a game of tag, but we find other lower energy ways to have fun. We still go to ball games of all sorts, visit theme parks, and have adventures outside of our home. If we're staying in we'll play board games, have a baking contest, do some quick crafts, or something else that won't drain my strength too much. See below to find out what Herbie & I did with our spoons today!

We played a fun round of Battleship with Turtle Mae!

Looked at some of the old DC Unexpected comic books

Finally, we watched the girls play some Minecraft before enjoying a little UFC 2 before bed

Why Herbie?

I know you've seen pictures of him in my first post, but you may be wondering how Herbie came to be the mascot of my blog. I wish I could say he's been in my life for ages & we have a long history of mischief, but that isn't true at all. If my blog had a different title, Herbie might never have been chosen as my companion.

My sister & I kicked around a few ideas for blog names, but actually came up with The Upside Down Turtle while joking about T-shirt designs for next year's MS walk. Some days with MS are good & I can move along, slowly, but I get there eventually. Then there are the days I feel exactly like an upside down turtle. My world has been flipped, I can't walk, & I'm completely stuck. The blog title was perfect, and better yet, available.

Once a title was chosen, I knew my blog would need photos....lots of photos. I'm not exactly the most photogenic person & I absolutely despise having my picture taken. If my title was going to mention turtles, I would need a cute mascot to match. My sister & I looked at tons of cute potential buddies, but ultimately I kept coming back to the same stuffed turtle. There was just something about him that none of the others could match. He was the one and would need a perfect name.

Herbie means "illustrious warrior". I talk about MS a lot and my daily struggles with it and I wanted my companion to have a strong name to reflect the challenges we would face (corny, I know). I looked up names meaning strength, fighter, warrior, etc. In the end, my top three were Finian, Herbie, & Gus. You of course know which won out after the kids took a vote. Ta-da! Herbie was officially born! The kids wanted to make sure I shared some photos of his first day in his new home, so we picked a few for your viewing pleasure!

He's arrived!!!

Lazing on the swingset while watching the kids run around

Naptime snuggles