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!

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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?

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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

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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

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Don't Stress About The Mess

I don't know what your house looks like, but mine doesn't exactly look like one of those beautiful homes in the magazines where everything is perfectly in place. We have an overwhelming amount of stuff. If you visit, you'll probably find toys in nearly every room, dishes in the sink, piles of laundry that need washed or clean clothes that need put away, & just general clutter.  I fill trash bags & my hubby takes them for donation or the consignment shop, but I swear the stuff just multiplies after each load leaves! I would love to have a gorgeous clutter-free home where everything is perfectly clean & organized, but I also enjoy hanging out with my kids & hubby. Energy is limited so I make sure the worst messes get taken care of & leave the stuff that can wait so I'm not too tired to make memories.

Usually, I feel really guilty about the state that our home is in & my inability to get things caught up. I should be able to clean my own house, but the reality is that it's incredibly difficult to complete just one task so the odds of me doing several are pretty slim. The kids may grumble about their chores, but they are really good about helping Herbie and me out & I'm incredibly grateful to have such a fantastic family. Even though we're always behind on housework & the clutter is ridiculous, the dirt is cleaned up (mostly).

At least the coffee table is clean!

Struggling with balance between a clean house & fun is not a problem exclusive to those of us with MS. At the urologist's office today, the nurse & I had a chance to chat while waiting to use the ultrasound machine. Now that her son is getting married next month, she was reflecting on all the time spent cleaning that cut into her time to spend with her children before they grew up and warned me not to do the same. She said that when her kids were young, she would make sure their house was pristine - always fussing over anything out of place or a speck of dust on a shelf. The nurse sighed and said, "All that time wasted." Nowadays, she makes sure her house is still clean, but doesn't obsess over it & instead focuses on enjoying life.

 I can't be the only one looking around at the mess and feeling like a terrible parent. As long as your home is clean enough to keep you sane, let go of the guilt & leave the rest for the days when you have extra time & energy. The mess will always be there, but your child looking at you with those big eyes begging you to play with them will not. What fun thing will you be doing today?

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Definitely Not Meant To Be A Chef!

I’ve never been a great cook. My sister loves to tell everyone about the time I hollered for help because my thumbs were stuck in an egg I was trying to crack. My college friends will share that I cooked all my meals, and even their birthday cakes, in the microwave. My husband will tell you that for the first couple years that we were married, I frequently ruined meals & had to measure the amount of water to boil for macaroni & cheese. You get the idea…

While I’m not as terrible as I used to be, I’m still not fantastic. Most of my new recipes are failed attempts. Every once in a while, I’ll have a happy accident where I made it incorrectly, but it still tasted okay. Usually, I’ll tell my hubby I’m trying something new & he tries to hide a sigh. Sometimes he’s pleasantly surprised, but most of the time he’s right to be concerned.

Lately, I’ve been trying to eat healthier (think lots of smoothies & salads). I’m trying to give up grains & dairy, but it’s been difficult. My cupboard is now filled with coconut flour, arrowroot starch, tapioca flour, nutritional yeast & other ingredients that are foreign to me. Herbie & I are a bit skeptical that we can make a yummy “cheese” sauce with potatoes, carrots, & nutritional yeast. I’m sure we’ll let you know soon how that comes out! We will try anything once, so if you have a great recipe feel free to share it & I’ll be sure to post photos of Herbie helping me make it!

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My Journey To Diagnosis Part Two

Today’s adventure is starting on the couch. After spending a fun, but very cold day at Carowinds on Sunday and working yesterday, I am exhausted. I stared at the floor that needs swept & the pile of dirty dishes in the next room and decided that it would be easier to type up the second part of my diagnosis journey instead. Those tasks can wait until my energy level recovers.

We left off with a misdiagnosis of occipital neuralgia which meant I ventured into the pain clinic for occipital block injections. These are scary to think about, but in reality they are not too terrible. Before giving the first one, the Dr. explained that the injections will be given during an ultrasound of the back of the lower skull. He then went on to tell me that the reason for doing this is to be sure the injections are placed in the correct location. Being slightly off could cause partial paralysis or, better yet, turn me into a vegetable. Welcome to what I called the weekly round of “Russian roulette”! For added fun, they may blur your vision for an hour or two. Freaked me out the first time since no one bothered to mention that, so if you ever have to get them and that happens, no worries!

Each week I would have a new symptom: my right arm would go numb, my legs would feel like my feet were planted in cement, my left arm would go numb, my left leg would feel really weak, etc. While driving to work one day, I felt a vibration in the middle of my spine and was trying to figure out how in the heck my cell phone had gotten behind my back. I searched while stopped at a red light only to discover my phone was on the passenger seat beside me. Weird. I could’ve sworn that I felt it vibrate from a text message. For the next few weeks, if you saw me jump a bit in the middle of a conversation, that was the reason. Every time I received my blocks I would ask the Dr. if that was normal for occipital neuralgia & each week I would get the same response: everyone responds to pain differently. I knew my headaches were bad & my pain tolerance is pretty high, but I found it hard to believe that I was in enough pain to cause all these random symptoms.

After receiving the occipital blocks for 6 weeks, I was told that I had been given the maximum and would have to wait another 6 weeks before resuming them. My speech hadn’t slurred for a couple weeks & some of my newer symptoms had come & gone so I thought maybe they had been helping a bit. The first week without them was okay since it was the normal timeframe between shots, but the second week was interesting. Each day I felt worse & another symptom would return until I collapsed at work one day. It was super embarrassing to have them practically carry me through the store & out to the car in the parking lot. I told myself that since my symptoms usually got better overnight, I’d be fine again in the morning. Haha! My body had other plans. In the morning, I was still unable to stand on my own & we ended up going to the hospital.

Doctors and nurses assured me that the walker they gave me would only be used while I was at the hospital. A few days later, they changed their tune & it would only be for a few weeks at home while I did physical therapy. Eventually, it became “The walker is your best friend & you should never leave your best friend alone.”

Hanging with the walker my incredibly talented sister painted for me

It’s been just 2 years since MS tapped my shoulder & insisted I pay attention to it. My "best friend" & I are still enemies at the moment, but I’m grateful for my friend’s presence at some point each day. Every time I see a new Dr. or speak with someone else who has MS I hear the same words: “Wow, that’s fast for MS!” I guess it must be true since I’m told that so often, but I’m just lucky. MS certainly isn’t funny, but I’ve become clumsier than ever & laugh at myself & my situation often. No worries! It could always be worse!

Anyway, that’s the gist of my personal introduction to MS. For those of you who are also battling your way through daily life, I would love to hear your stories!

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My Journey To Diagnosis Part One

It’s no secret that I have multiple sclerosis. For those of you unfamiliar with this condition, the nervous system of the individual attacks the lining (myelin sheath) of their nerves. Have you ever tried to charge your phone with a power cord with an area of the wires exposed? It shorts out a lot so you have to fiddle with it to get it to actually charge. That’s how my nerves work. Certain nerves in my body are just not sending the signal properly. They call MS the snowflake disease because no one has all their lesions in the exact same locations as someone else so each person is uniquely affected. This diagnosis does not define me, but it does have quite an effect on my daily life so I thought I would share my story.

I’m not exactly sure when it began to be honest. It’s possible it was lurking for years before insisting that I pay it more attention or it could truly be a recent development. Either way, it started tapping my shoulder around the beginning of 2016. I’ve always had migraines, but they were monthly & predictable. They rapidly increased in both frequency & intensity until I was having a pretty good one daily. My Dr., thinking it was hormonal, ordered a hysterectomy. This was THE BEST mistake ever!!! I did not miss my cycle at all, but it didn’t help the migraines.

I was given a referral to a neurologist and, a few months later, (who knew neurologists were so hard to book???) she looked at me for 5 minutes & decided it was occipital neuralgia. This Dr. referred me to physical therapy as well as a pain clinic, but the pain clinic was going to take several months to get into. I did physical therapy for a bit where they gave me neck exercises to do & massaged my occipital nerves (where the skull meets your neck), but it didn’t really do much & I started having other issues. I never heard from that neurologist again.

I found myself at work one day slurring my words. I shrugged it off and decided my headache must be worse than I thought & I would nap when I got home so I pushed through. A couple hours later I was staring at the computer screen. What was I typing? Oh crap! How do I type??? By the time I would remember the word, I couldn’t figure out how to get it on the screen. Once I figured out what a keyboard was, I couldn’t remember what word I needed to type. It took me a ridiculous amount of time to type a 3 sentence email to our district manager & I can only hope it made sense. I think that’s the point where I started to think that maybe there was something really wrong.

Are you still reading this? Wow! The next part is where the fun really begins. I started my weekly rounds of what I called “Russian roulette”. For those of you still interested in reading my ramblings about my journey to diagnosis, you can find out more in my next post. Thanks for following along!

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Welcome To My First Post

Hey there! If you’ve found this blog it’s either because you know me, have received a diagnosis that’s left you searching the web for anyone going through the same thing, or stumbled across this randomly while bored. Whatever the reason, I’m glad you’re here!

Like comics? Let’s chat! Need to save money? I’ll talk about couponing for as long as you’re willing to listen. Parent needing a laugh or a place to vent? Perfect! Have MS and  need someone who understands what you’re going through & has experiences to share? I’m here!

I decided I wanted a place to share my tips, tricks, & crazy stories. Welcome! My turtle companion, Herbie, rides along wherever I may go. I’m a bit camera shy, so you’ll be seeing a lot of him. Since it’s our first post, I’ll just share a few photos from our day.

Picked some wildflowers with the kids

Fun on the swingset

A giant bowl of popcorn & Despicable Me 3 before bed

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