Upside Down Turtle On Wheels

The past month has been a whirlwind of activity at our home. The end of the school year performances and parties, my wonderful family members purchasing paint & actually doing the labor of painting various areas of our house as an early birthday gift, and preparing for HeroesCon have all combined to keep me from overthinking things too much. While I haven’t necessarily accepted that my legs do not function like they should, I have realized that it is quite ridiculous to be unprepared for the times I can’t ignore the issues. Less than two years after being diagnosed with MS, I took the advice of my adaptive tech rep & my boss and agreed to discuss getting a power chair with my neurologist.

I’m still stubbornly disagreeing with my neurologist about what qualifies as a true fall, but I do admit to a few people that I stumble a lot. I don’t consider it to be a fall if I catch myself with the wall or a piece of furniture, but my doctors disagree and the conversation quickly changed from discussing a power chair as an option to a conversation about it no longer being a choice. An appointment was made with physical therapy and a rep from Numotion I had met previously through my adaptive tech rep and, even though I surprised them with my muscle strength, my short walk through the hallway must not have been nearly as impressive because there was no hesitation in their decision that I qualified.

The next few months were spent fretting over how to finance the chair because what the insurance didn’t cover was still quite a bit of money for our household. Vocational rehab said they would likely pay for some, but not all. Fast forward to the last week of school and, as we’re pulling into the parking lot to watch Turtle Mae perform in the talent show, I get a phone call from my caseworker saying they are paying everything that my insurance would not. Woohoo!

Although there have been a few hiccups along the way, my power chair has arrived. There are so many mixed emotions that come with the realization that I will be using one of these machines to make my way around in the world. I am glad that my hubby’s back will no longer suffer from hours of pushing my butt around when we go places. I’m embarrassed to openly admit that I am not as fine as I tell everyone I am and try to pretend to be (and yes, I know that’s silly). I’m both saddened and angered when I think about how much MS has taken from me in such a short time. I’m happy that I will be able to safely wander off on my own while shopping or at a comicon. I’m worried about what others will think about the healthy looking mom lazily using an electric wheelchair (even though it’s none of their business). I am incredibly nervous that I will knock over displays while working. I’m excited about the possibilities that come with this newfound mobility.

My sister is taking me out and about for a practice run before I take it to work and while I have several reservations about using the darn thing, I am sure I will be incredibly grateful that I have it on days when I am exhausted or my legs refuse to work. It will also be nice to have during those times when my legs are only a bit wobbly, but my hands are unable to use the rollator to keep me safe from falls. Be warned though, I was not the best driver in the world, so I’m sure I can’t be trusted with an electric chair either! If you see an upside down turtle riding around during these first few weeks, be sure to keep a safe distance!

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Truly Blessed

For the past year or so, the stairs leading up to the second floor of our home have been my enemy. I have stood near the bottom with legs wobbling, staring upward, and trying to find the ability to keep placing one foot in front of the other to get to my destination while my hubby stood behind me with the theme song from "Rocky" blaring on his phone. I’ve crawled on my hands and knees to make my way slowly to the top, used the “army crawl” on days when my hands were too painful or useless to help, and on really bad days I’ve been carried by my hubby. Turtle Monroe and I would have “butt bounce” races down the stairs in an effort to keep laughing at the situation.

We spoke with adaptive tech, vocational rehab, and independent living reps in the hopes of finding financial assistance for a stair lift but were turned down each time. Our stairs have a landing with a turn leading to a couple more steps and this extra twist would add to the expense which was definitely beyond our price range. After a while, crawling became my new normal and as long as no one was watching, I no longer recognized it as odd. Lately though, even this was getting increasingly difficult and I once again contacted different organizations  in an effort to find a discount of some sort to make a stair lift affordable.

Turtle Mae was allowed one ride to test it out

After a few more rejections, I remembered that the National MS Society works with various companies and organizations and decided to give them a call to see if they knew who would be good to contact. There are several companies in my area who install lifts and I had no idea which was the most reputable, cheapest, and offered the best financing options. When the MS Society said they only had one listing for my area I was surprised. The woman said she would be sending them an email and I would be receiving a call sometime soon. She also said that the organization she was contacting was a group of volunteers who may ask us to pay the cost of materials, but nothing more. I was floored, thanked her, and started to think that maybe we could make this happen after all.

This was heavy and turned out to be a bit of a challenge to install

I had never heard of Hickory Grove Baptist or Hearts & Hammers until I received a phone call within the week from a gentleman who said he had been told that I needed some equipment installed. I explained that I needed a stair lift and also would be interested in a quote for a threshold ramp as well and we set a time for him to come out the next morning. Once he arrived with another guy, he again asked what exactly I might need and they immediately began measuring. They handed me an application to fill out which was just a single page stating what I needed and why. Easy enough. While I filled it out they discussed options with each other.

The ramp installation was super quick!

The first gentleman sat down beside me and asked how exactly I had heard of their organization and gotten in contact with them. That was a short and simple story, but after I told it he shook his head in wonder. The National MS Society rep I had spoken to was in Colorado and my request had been sent through three offices in two states before reaching him the day before and it had all taken less than a week. He then told me that they would definitely be able to help me with the installations and I asked how much it would come to. He looked at me and held up his fingers to form a “0”. I'm fairly certain my eyes were wide and my jaw had dropped open before I asked him if he was sure. Within that very week, a stair lift had been donated which would work for my home (except the last two steps, but they had received donations of grab bars and we decided that would work for me to get to the chair on the landing well enough). Also, they had purchased a threshold ramp for another install that ended up not fitting, but my threshold measurements showed it would fit our home perfectly. What are the odds?

Two weeks later, a crew showed up and installed the threshold ramp, grab bars, and stair lift at no cost to my family.  MS has certainly brought it’s challenges, but it has also brought me several reminders that God truly does take care of us! This isn’t the first time we’ve been blessed by others and I continue to be amazed by the generosity of this world when times seem to be tough!

Making some final adjustments

If you want to check out Hearts & Hammers, they are an amazing organization that handles bathroom remodels, ramps, stair lifts, widens doorways, etc. They are one of the many mission groups of Hickory Grove Baptist and are helping churches in other states start their own Hearts & Hammers programs. Donate, spread the word about the fantastic work that they’re doing, or volunteer to help out with one of their local groups (this particular one handles 300 jobs per year on average). The guys that came out were some of the nicest you’ll ever meet and I can’t thank them enough for the great job they did!

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The MonSter Speaks

Usually I am able to stay fairly positive and convince myself that things really aren’t that bad, but sometimes at the end of the day the MonSter starts whispering and it’s difficult to ignore the fear. Three years ago I was able to walk without thinking about it, drive anywhere I wanted, and make plans for the future without any idea that they would be drastically altered. Two years ago I was still walking and, other than a headache and occasional slurred words, wasn’t terribly concerned about what was going on thinking it was probably all related to my migraines and easily fixed by the right doctor. Now I am staring at a stair lift and power chair wondering what will be taken away next.

I’ve had moments in these last two years during which I couldn’t speak, struggled to use my hands to feed myself, and my legs were just dead weight. Clearly this indicates damage to the nerve pathways controlling these actions which will most likely worsen over time. How much time? Tomorrow? Twenty years from now? Never? I have no way of knowing and it’s terrifying to think about. Most of the time I can silence the tiny voice inciting panic, but today it is screaming and its words are overwhelming. By tomorrow morning it will once again be back to just a whisper and I will go about my day telling everyone, including myself, that I am fine and there is nothing to worry about. Tonight though…..Tonight I will allow myself to grieve the parts of me that have been destroyed by this thing called MS, let my thoughts wander through the worries of tomorrows, and indulge in sobs until the tears have washed the voice to the far corners of my mind once more.

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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)

optional:
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!

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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

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🎶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!

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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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