A Taste of Spring

Herbie and I haven't done much this past year. I napped while the kids were at school, helped them with homework in the afternoon, and cooked dinner in the evening. Occasionally, we would attend a ball game or school event, but that's about it. There. You're all caught up.

This past month has been different though. We've all been thrown into schedule changes, working from home, homeschooling, and general quarantine of varying degrees. Our family is no different and we're all adapting. There are no more naps, but there is lots more homework. There are no more visits to the doctor's office, but there are virtual appointments. Springtime has been drastically different from years past, but it's comforting to know that some things have remained the same. Birds still sing, our woodpecker can be heard tapping away, blue-tailed skinks can be seen diving for cover every time we open our front door, and flowers are blooming everywhere.

Speaking of flowers, our yard is covered in beautiful violets. They're lovely to look at, but also tasty. I've seen photos of these lovelies being added to salads, desserts, and used as herbal remedies. When my turtles were much smaller, we made violet syrup. None of us really remembered what it tasted like, but we did recall it's gorgeous color as we poured it on stacks of pancakes. It was most definitely time to gather plenty of flowers and visit the kitchen.

While we couldn't find the recipe I used a while back, most of the recipes I could find all had the same ingredients: flowers, water, sugar, and lemon juice. Simple enough and since none agreed on ratios, I figure it's hard to screw this up. Fantastic! Once you've gathered as many flowers as you feel like picking (generally 1.5-2 cups seems to be a reasonable amount), rinse them off and cover them with boiling water. Allow this "tea" to steep for 24 hours. We made 2 batches and our second steeped for a few hours extra because I'm forgetful and easily distracted. The floral notes were much stronger, but still really good.

Once your flowers have turned your water a lovely shade of blue/purple, strain your flowers into a saucepan using fine mesh or cheesecloth and gently squeeze the remaining "tea" from your violet petals. Now comes the fun part where you get to experiment with what amounts of the remaining ingredients work best for you! We began with 1 cup of sugar which was the minimum suggested in the various recipes we referred to, but ended up adding 2 cups to our first batch. For our second, we only used 1.5 cups of sugar since we had collected fewer violets. Place your saucepan over medium heat, add your sugar to taste, then stir constantly until it begins to thicken. Your beautiful color will darken, but as long as you don't boil your liquid you'll still end up with a pretty shade in the end. It may take several minutes of stirring and will still look quite watery, but once it begins cooling on a spoon with the proper syrup consistency remove your pan from the heat and add a few drops of lemon juice. When you add your lemon juice the color will change depending on how many drops you add. You can see the difference between our batches in the photo below. The first batch is in the larger jar and is much lighter because I added a few more drops of lemon juice than I did to the second batch. Once again, you can't go wrong! Pour your syrup into jar(s) to cool completely and voila! You've successfully made a delicious violet syrup! Pat yourself on the back and then the hardest thing left to do is decide how you will use it. Some yummy choices for its use could be atop pancakes, added to buttercream frosting, mixed with lemonade, or whatever else your imagination comes up with. Enjoy!

Here's the rough recipe:

1.5-2 cups flowers
1.5-2 cups boiling water
1-2 cups sugar (adjust to taste)
2-6 drops lemon juice (personal preference for color)

-Collect your flowers (just the flowers, no leaves or stems)
-Rinse your flowers, place them in a jar and add just enough boiling water to cover them well
-Steep your flowers for about 24 hours, then strain with wire mesh or cheesecloth into a saucepan
-Place saucepan over medium heat, add sugar to taste, stir constantly without allowing your liquid to boil until it cools on a spoon
to a syrup consistency
-Remove from heat and add drops of lemon juice until you have your desired color
-Seal in jars and store in your refrigerator until ready to use

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Sunshine & Comicons

Spring is here! The sun is shining (finally), the flowers are blooming, the birds are singing, and my strength is coming back! I don't know if it's the warmer temperatures or the trial medication I may or may not be on, but I'm incredibly grateful!

There's a lot going on in our household: concerts, talent shows, field trips, ball games, scout camping trips, and talk of the big summer comic convention. The time is just flying by and I can't keep up, but I'm doing my best to stay on top of things. I'm back on track with my DDPY (an amazing irregular "yoga" program btw) and trying to build my strength up. I would love to be able to walk around the comicon in June, but will be content with being able to walk to the end of our short side street and back with or without my rollator. Goals are important. For the moment, I'm going to experiment with using my rollator a bit more often & The Beastie a bit less. We'll see how it goes, but I'm optimistic as always!

Speaking of comicon though, I'm thinking I should probably jazz up The Beastie for the occasion. I don't want to do anything over the top and I don't cosplay, but it just feels like it needs a little touch of something fun. I'm more of a Marvel fan than DC, I like the old Gold Key comics, and am a proud Hufflepuff who is open to suggestions because I have none of my own at the moment. Brainstorm and talk nerdy with me!

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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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