MS – Page 7 – Amy's Axons

November 2019

If Only… NASA, Amy, and Youth

November 24, 2019November 24, 2019by amysaxons

Sometimes the difference between an intricate, highly complex machine working or blowing apart is down to a simple, small component’s integrity at one single moment in time. NASA learned this lesson the hard way in both the Challenger and Columbia disasters. In both cases, the defective components were made months and even years before either shuttle was assembled.

As the symptoms of my MS have progressed, I am reminded of how “fearfully and wonderfully made” (Ps 139:14) each of us truly are. Despite billions of dollars worth of research, centuries of learning about the anatomy and physiology of the human body, and life-long careers devoted exclusively to trying to figure out what goes wrong to make MS activate, there is still so much we don’t know. In the early 1600s, German mathematician and astronomer Johannes Kepler was correct when he described his study of planetary movements as “thinking God’s thoughts after Him”. This statement is true in every avenue of mathematics and science, especially in the study of biology.

Somewhere, somehow, some way, long before I ever had any symptoms of my Multiple Sclerosis, all the viral, environmental, hereditary, and biological elements were just right to kick this disease into action in the biological petri dish that makes me me.

My immune system got all confused and started destroying itself. Thanks to MRIs, I have seen for myself the white smears and dots scattered across my brain and spinal cord where tell-tale signs of damage can be easily seen. It remains inexplicable how it happened, but that doesn’t stand in the way of it being true. All my progressive, worsening problems with balance, walking, incontinence, dropping things, quick and excessive fatigue, tingling, and slow processing are all due to these white globs that made their initial marks nearly thirty years ago.

It’s staggering to imagine that such small blobs etched out so long ago have created the big problems I deal with every day.

Hmm, I feel a life lesson coming on. Sometimes it’s the little, but wrong, things we allow ourselves to do early in life that eventually turn out to be our undoing in the end.

If only someone would have checked the integrity of the O-ring on the right solid rocket booster before the Challenger took off, seven lives would have been saved. If only one day we could figure out what causes MS and how to stop it before other people’s neurologic integrity becomes comprised and they end up going through a progressively worsening disease process. If only we ourselves strove to live Godly lives and to teach the young how to choose right, so many lives would flourish and God would be glorified. If only.

November 2019

Sister Trip on Mom’s Birthday

November 8, 2019November 8, 2019by amysaxons1 Comment

This past Monday was my Mom’s birthday, it was the fourth year my sister Susan and I celebrated it without her. It’s always a tender kind of day for both of us, one that’s full of sweet memories hemmed in by missing her.

This year Susan flew from Texas and I flew from Missouri to spend Mom’s birthday together in Florida. Mom always loved that we were close as sisters and she would have thought this was an excellent idea! It certainly was, ummm…, an interesting experience for me flying solo. I was drug backwards through two terminals, in and out of three elevators, and on and off the sky train to get to my connecting flight to Orlando via Dallas.

We stayed at my sweet mother-in-law’s vacay house near New Smyrna Beach. We filled our days with lots of reminiscing, stories both old and new, lots of laughter, and, of course, exceptionally good food!

We got sand in our toes and sea breeze in our hair the first full day. The tide was in and the waves were white-capped one and all. That afternoon we discovered the scenic, old downtown sidewalks and stairs into nearly every store were not meant for me (or anyone else with limited mobility) to peruse, so we went back to the house and lounged the afternoon away.

Mom took us girls to Epcot over spring break in 1988. How can it have been that long ago?! Yikes, we’re getting old!! Susan has been back since then but I haven’t. So, we decided to go on Monday, November 4th, Mom’s birthday. Mercy, we enjoyed ourselves and know Mom would have approved of all the sights, sounds, and tastes! We lucked into being there during the International Food and Wine Festival. We ate our way around the world and let our inner gluttony rule until we had made a full circle of the park.

As good as the other days had been, I think our last full day was probably my favorite. We found a beautiful, quiet, out of the way, public park with a pier jutting out into an ocean inlet. We sat and soaked up the Florida sun, the sounds of the leaves rustling through the palmettos, and the peacefulness of our surroundings since no one else was there.

As we turned around to walk back along the pier to our rental car, we noticed a common egret perched on the wooden rails. It looked straight at us and then serenely continued to preen and go about his business as if it knew we were harmless. Susan and I quietly inched our way closer taking picture after picture until we were no more than three feet away. Egrets are very common shore birds in Florida and someone else residing there might have hardly noticed his presence. However, we were mesmerized by him and thought he was anything but common, as his name implies. His feathers billowed in the wind and his black legs and toes were a beautiful contrast against his white body. And his eyes, his eyes! I’m positive he not only saw us but appraised us as he stared our way. We three stood in our strange, small huddle for several minutes with him posing and us snapping picture after picture. He was the one who had called our meeting together by his mere presence so it was only polite that he should be the one to adjourn it. With a deep bend of his knees and a long stretch of his wings he was in flight, soaring over the waters and away from us. Susan and I talked about him and what a fascinating creature he was, but we were just one side of the experience. I’m back home in Missouri now but find myself thinking of him. I wonder if he thought anything at the time of the two women held in his charms and if we left any sort of lasting impression on him that he remembers now.

Much like the memories of our Mom, his brief encounter with us will linger and live on inside us.

October 2019

Changing Seasons

October 23, 2019by amysaxons4 Comments

A chill in the air, pumpkins, bales of hay, colorful leaves, small town festivals and fairs, costumes and candy, long sleeves, and warm bowls of chili. Autumn is my favorite season and I am not alone. More poems have been written extolling Autumn’s winsome ways than any other season. One of my favorite childhood memories is playing with my younger sister for hours in the leaves. I would rake “roads” out of the leaves in the backyard and she would “drive” her Tonka Truck through them all with Ken and Barbie dressed up in their warmest outfits in the driver and passenger seats.

It wasn’t until I was older that I understood how the changing seasons reflect the stages of our lives. I am now in the early autumn of my life as the big 50 lies in wait to spring upon me in six months time. I miss the never ending energy and gusto of the spring of my youth. I fondly remember the excitement and first-time experiences of living through the summer season, too. All the “adult” things like the first job in my chosen profession, buying my first house and my first car, being entirely responsible for budgeting my first paycheck…and so on were exciting times. During the first two seasons of life the sun hardly ever seemed to set and youth had enough vitality to live the long days to their fullest measure.

Now, in the early autumn of my life, my energy wanes like the shortening days, with fewer productive hours to get things done. There are not nearly as many firsts to experience, either. However, what has been lost from the previous seasons has been made up for in privileges only afforded to those blessed with long years. I have lived long enough to have naturally accrued some wisdom along the way.

I’ve learned how to tell the difference between what is important and what is not, and the truth from a lie. People are more important than things. I can look back and see how God has led me through the fires and floods to safer, higher ground. And I have learned having fun is different than living a life of joy, the latter being so much more important and meaningful. Chasing after experiences does not equate experiencing life to the fullest. The fullest life is one that surrenders self in order to experience the indwelling of the living God, Christ living in me and me living in Him.

As the trees change to autumnal colors and I find myself purposefully traveling roads with hilltops that afford me a larger breadth of view so I can soak in all the beauty, I look back over my life to see the distance I have travelled. Not all the views are beautiful, I’ve not lived perfectly, just humanly. However, I can see and feel the hand of God lifting me higher and higher until the dead and barren patches are covered over with His forgiveness, mercy, grace, and loving-kindness. He calls us all to live, move, and have our being in Him (Acts 17:28). He really does make all things beautiful in His time (Ecclesiastes 3:11)!

God’s blessings,
Amy

October 2019

I’ve Become a Little Sew and Sew Thanks to Information Overload

October 1, 2019October 2, 2019by amysaxons3 Comments

Hello Friends, happy October to you!

It’s been three weeks since I finished my Ocrevus infusions and, thankfully, I have returned to my normal MS baseline. I’ve had quite a few people ask me if I have noticed my MS “getting better yet”. Sadly, the answer is no. There aren’t any cures for MS and there is nothing to take away the damage that has already been done. The purpose of Ocrevus, and all the other disease modifying drugs, is to try to stop any further damage from occurring. There are many researchers working hard to try to figure out how to not only stop MS from progressing, but also how to repair damage to the nervous system in order to reverse the debilitating symptoms of the disease. This is a pretty good segue into the information overload mentioned in the title.

Perhaps you are like me and have had to take breaks from social media and the constant barrage of local and international news for the sake of maintaining your own sanity. Well, about a year ago I signed up to a couple of daily MS research news outlets. They arrive in my inbox each morning and present several summaries and links from around the world to everything ranging from research proposals to current studies in mice (poor little mice, they’ve born the brunt of forward thinking MS flops and successes), comparisons of a current MS drug against a possible new drug, clinical trials in all manner of stages, forums about MS, and even articles by fellow MSers about how they live and cope with the disease.

I typically do like to be on top of all the latest MS information, but here lately I’ve been feeling like it’s all too ivory tower. Down here in the trenches, at least in my trench, it’s muddy and wormy with the walls always caving in and needing constant repair. I’m covered in the dank, earthy stench that never leaves my nostrils, even when I dare to raise my head in an effort to try to go over the top, despite having trench-foot. To top it all off, a hail of bullets marked MS come flying over my head intermittently keeping me in a state of constant vigilance and exhaustion.

So, at least for now, I’m going to lie low down here in my mucky but familiar trench and try not to worry about what the people in the ivory towers conjure up for the next move. I’m not giving up on it and I’m glad someone is in the ivory tower, I just need a break from it all for a while.

To that end, about a month ago, I dusted off my sewing machine, turned the music up, and started stitching away! My Mom was a wonderful seamstress and even owned a fabric store when I was young. She showed me how to sew but it didn’t come as easily to me as it did for her. I took a sewing class in high school and had a few lessons through 4-H, too. I’ve sewn a few things through the years as an adult but never really thought of it as something I could get into as a regular hobby. That is until now. I am thoroughly enjoying myself and looking forward to each new day to get stuck in to some new project! The first one was this little sewing catch-all.

I used the leftover material from the catch-all to make some cute bowl huggers for the microwave.

While it is true that some days I am too tired to sew at all and other days I have to take breaks after just a little bit of sewing exertion, just being in my little sewing space brings me joy. For example, looking at all this thread…

…and ALL this fabric with cats ❤️ brings me inspiration for new projects to try when I eventually do have energy!!

I finished up a couple of these boxes yesterday so I would have a better way to see and store my fabric.

I’ve made several things for others, too, which has given me joy and purpose. Fair warning: If you get a Christmas gift from me this year it’s probably going to be homemade. But don’t worry, not all the fabrics I’ve been stashing away have cats on them 😉.

Signing out from the trenches and hoping you’re upwind from me!

Amy

September 2019

Bike 150, Jammies, and OJ #2

September 12, 2019September 24, 2019by amysaxonsLeave a Comment

Hello Friends!

It’s time for my next heapin’ helpin’ of Ocrevus! I’m writing this at the hospital while the Ocrevus Juice (“OJ”) is going in.

Thursday, August 29, 2019 was the big day for my first infusion. I was excited to get the OJ going…

… and today I keep thinking that I am willing allowing this whole business to happen to me at a cost of $17,000 per infusion.

My life has been a pretty low key affair since I posted last. As far as the OJ is concerned, I felt decent and it seemed I even had a bit more energy than usual for the first couple of days, despite a light, chronic headache. Naturally, the penny eventually dropped and on the third day a monstrously oppressive fatigue settled in. It felt like I was trying to balance a bowling ball on my neck instead of my head. My legs were concrete pillars and my feet were made of iron. This tyranny lasted for five days before finally releasing me to a much kinder, though still pretty strict, general tiredness. I wonder how it will play out this time. I’m hoping it demands rocky road ice cream 😉.

Todd and I did have one HUGE outing this past Saturday. He rode in the MS Bike 150 in my honor 🥰. I was so proud of him. It was brutally hot that day but he pushed on and completed 102 miles! As I’ve mentioned before in previous blogs, I don’t drive much anymore because it makes me tired. So, it was a ginormous effort for me to drive 80 miles to the finish line to pick him up. Both of us gave it all we had in the name of fighting this crazy disease. I ended up paying for the effort for a couple of days. On the upside, I spent two days in my jammies snuggling with our cats whilst alternatively watching TV and reading.

Sweating it out in order to cheer my Todd the last 100 feet. If you squint you can see the orange finish line behind me.

Time spent with cats is never wasted.
~ Sigmund Freud

I have no idea when I will feel lucid enough to write another post. But I do sincerely thank you for joining me as I meander through the wilderness that is MS.

May God be with you.

August 2019

First Dose of Ocrevus Is in the Books!

August 30, 2019by amysaxons4 Comments

I kept a running log yesterday of how my first experience with Ocrevus went. It was a long day for me, but it went pretty smoothly. Even so, I’m glad it’s over because the anticipation of the unknown was getting pretty heavy to carry. In hind site, I don’t think it was the best decision for me to join a Facebook Ocrevus group. There were some pretty extreme experiences shared and a fair amount of misinformation conveyed about both MS and Ocrevus. Each person’s body reacts differently to the ever growing range of MS Disease Modifying Therapies (DMTs), though. This was mine.

7:15 Checked in at Hospital Admissions
7:30 Rode up to the Infusion Center via the scenic route with a blue haired volunteer who got lost in the hospital 😂
7:50 All checked in and IV lead placed then taken to a chair. Waiting for pharmacy to bring my drugs up.
8:33 Drugs arrive. Benadryl, Solu-Medrol, and Saline into the IV first… I’m getting sleepy. Solumedrol is flowing, it feels a little cold as it hits the vein. They gave me a couple of Tylenol, too.
8:40 The nurse starts the Ocrevus Juice (O.J.😉) and says, “You’re off like a herd of turtles, Sister.”
8:51 I have a funky sweet metallic taste in my mouth😝.
9:50 They’ve now bumped up the infusion rate twice and all is well other than a mild headache.
10:15 The rate of infusion was bumped up again and all is well.
10:35 Well, I just had a mild reaction consisting of a worsening headache and dizziness. They are pausing the medicine for 30 minutes and then they are going to slow the rate of infusion down when they resume it. So… it’s going to take a bit more time than the originally planned 4.5 hours.
11:00 I feel better now that they’ve stopped the med and are just running saline.
11:24 Infusion resumed and I’m eating the lunch I packed for myself.
11:55 Bumped up the rate again and I still feel fine.
12:24 Last bump up to the same rate that gave me the headache and dizziness. Fingers crossed it’s okay now. There’s not much left in the bag.
12:40. I have the slightest of headaches but the bag is so close to empty that I’m going to ride it out.
12:52 Ocrevus half dose #1 is in the books! I have to stay for an hour to be monitored but then I’m free🕊️!!
1:50 The last drop of the saline has dripped, IV is out, and I’m heading out for a dear friend from church to drive me home
2:20ish I’m home, ready to shower, and put my jammies on. I have still have a headache so time for some Advil. The icky metallic/sweet taste won’t budge. The metallic part is the very familiar taste of the Solu-Medrol. I guess the sweet part is the Ocrevus because it started within seconds of it beginning.
3:40 I walked around the house for about 25 minutes doing little chores here and there before I felt the usual, sudden onset of fatigue settle in and bind me to the recliner. I’m going to be here a while, but I don’t think it’s related to the Ocrevus, just my typical MS. The headache remains entrenched, though, and it’s definitely from the infusion. I’m not sure which drug has caused it, Solu-Medrol or Ocrevus or even the two together. I do regularly get headaches from Solu-Medrol, but not typically until closer to the 24-hour mark and Advil or Tylenol shuts it down pretty quickly.
6:00 Ate dinner and resting. The headache is still slowly throbbing away. It’s not terrible, just there.
8:15 Added a couple of Tylenol to my handful of night meds and got ready for bed.
8:30 Tucked up in bed, getting ready to pray, and hoping the headache gets tired of hanging around and runs away with the dish and the spoon or hitches a ride with the cow jumping over the moon.

Friday, August 30th
7:20 The headache is gone!! I’m flushing red from the steroids and feeling tired but other than that I’m great😁.

I just have to survive the next couple of days while the steroids ooze out. I go for the second half dose two weeks from yesterday, September 12th. And then…I don’t have to go back for six months in order to get my first full dose!

Thanks for hanging around to read this and for the many who have reached out to me to let me know they’ve been praying for me. I know the prayers have made all the difference!

God be with you,

Amy

July 2019

When Music Sounds, Gone Is the Earth I know

July 10, 2019July 10, 2019by amysaxons1 Comment

Without a job the days tend to blend together. I no longer feel a tinge of sadness that another Monday has rolled around or the excitement of the work-a-day world that it’s finally Friday again. But, for some strange reason, I definitely struggled through Monday this week. Was it because hubby had to go back to work after a lovely four day weekend together? I feel so much more freedom when he is home because it is the only time I really get out of the house these days. I don’t know, but I definitely had acute symptoms of Monday-itis.

Oh, before I forget, I should take a step back for a second. Remember that post a couple of weeks ago about me riding my bicycle and all that bravado of determination to stick it to MS and just ride anyway? Yep, that one. Well…that sent my MS rolling on the floor in screams of laughter and hilarity. It could hardly catch it’s breath long enough to snidely retort, “That’s a good one, Amy!” 🤣 😂

I have gotten on my bike four or five times since but I’ve come to the conclusion that a seven minute ride just isn’t worth five hours of drooling on the couch in utter debility.

So now, back to the story of Monday. I got up early to ride my bike and, to be fair, got along better than usual. I rode for 17 minutes and only had to rest for 45 minutes before being able to take a shower and brush my teeth. The fatigue settled in heavily thereafter, though, and was thick and heavy for the rest of the day. I was bored and my mind was clear enough that I wanted to be doing something. On three separate occasions, I tried to come up with something to write about. Nothing but a blank screen stared back at me. Honestly, after the first minute or two of nothingness, the screen wasn’t strictly blank, it looked a lot more like Spider Solitaire. I decided I was wasting too many brain cells doing such a mindless activity and was determined to do something productive. I emptied the dishwasher and swapped wasting brain cells for wasting energy I did not have. I then decided to work a little on a sewing project I had begun a few weeks ago. Who knew sewing took so much energy?? URG!

I tried reading. I love to read and take great delight in doing so nearly every day. Why didn’t I feel like reading? Hey, Monday, cut me some slack! I tried watching TV but I couldn’t find anything that interested me. I finished a puzzle I had started the day before but it only took about 15 minutes. I tried to watch the birds but apparently they all colluded with Monday and went to someone else’s feeders.

Having exhausted all the usual pursuits that keep me busy when I find myself forced to sit all day, a sudden stroke of genius popped into my mind. Music! I will listen to some music!!

I have a fairly eclectic taste in music. My music library is a hodge-podge of various decades of rock, punk, swing, big band, blues, jazz, folk, bluegrass, Christian…pretty much anything that isn’t country or rap. I’ve been listening a lot to rock, blues, and Christian the last few months but these did not fit the bill on Monday.

If I was ever sick during the school week while growing up, my parents would drop me off at my Grandma Lois’ house and she would take care of me until they were done with work. Grandma always had her radio tuned to KTXR 101.3, which was known back then as “The Gentle Giant”. They played a kooky mix of soft rock and various kinds of instrumental music. We never listened to KTXR at our house or in the car but I loved listening to it at Grandma’s house. Like all kids who grew up in the 70s and early 80s, I watched my fair share of The Lawrence Welk Show. Although I wasn’t ever really interested in listening to any of the lounge act singers, I was a huge fan of the orchestra, especially when they played by themselves. Somehow these two weirdly-paired entities of my childhood faintly illuminated the beginnings of a serious passion for a genre of music I wouldn’t have much exposure to until college. During 1989, while attending university, I discovered the local National Public Radio station in town. They played classical music several hours during the day back then and I suddenly felt like I had discovered the songs of angels. No other genre of music has ever come close to the joy and delight I have found through classical music.

I guess like all things in life, you go through phases of binging on one thing to the exclusion of all others until something brings you back to the center of some old passion and you relive the fundamental elements that drew you to it in the beginning.

And so around 1:15 in the afternoon all the “-itis” of my Monday disappeared. My heart soared upward, untethered from my languid body, until I no longer knew if I was part of this world or had joined the mirthful realm of the next. I cried listening to Chopin’s Raindrop Prelude and Etude Op. 25 – No. 1 because of their limpid, beautiful timbres. Brahms’ waltzes, especially my favorite, No 15 in A Major, Op. 39, felt like liquid love washing away all the dullness of the day. Beethoven, Mozart, Bach, Massenet, Debussy, Vivaldi, Schumann, Elgar, Ravel…one after the other until I was too blissed out to care that I was under the thumb of MS that day.

Music, when applied to just the right heart at just the right time, is the strongest balm one can apply to weary souls.

Music
When music sounds, gone is the earth I know,
And all of her lovely things even lovelier grow;
Her flowers in vision flame, her forest trees
Life burdened branches, stilled with ecstasies.

When music sounds, out of the water rise
Naiads whose beauty dims my waking eyes,
Rapt in strange dreams burns each enchanted face
With solemn echoing stirs their dwelling-place.

When music sounds, all that I was I am
Ere to this haunt of brooding dust I came;
And from Time's woods break into distant song
The swift-winged hours, as I hasten along.
  ~ Waltar De La Mare

July 2019

The Game is Afoot!

July 1, 2019July 1, 2019by amysaxons2 Comments

Two Saturdays ago I rode my bike out of our neighborhood and into one a few blocks away. As I was leaving that neighborhood, the all too familiar onset of instantaneous fatigue hit. I had ridden for 17 minutes but was still a good ten minutes away from home and had no choice but to keep pushing until I made it back. I have been paying for it ever since.

Oh, how I’ve battled fatigue these last many days! Nevertheless, I decided last night I’d test the waters by taking a short ride this morning. I got up early to avoid the heat and, for the first time in 2 weeks, rode up and down our street for almost seven minutes. The hardest part was when I was done. Walking back to the door from the far side of the garage where I parked my bike then up two steps into the house felt like I was conquering Everest. I had to sit and rest before taking a shower and getting dressed. I had to sit again, this time for two hours, before I mustered enough energy to brush my teeth. I’m beat! The fatigue is absolutely oppressive and utterly obstinate. I will rest and sit for the rest of the day, but I am determined to get up and ride again tomorrow. I don’t care if it’s just for a few minutes. I have to have some say in how I live with this and spend my limited energy. The old saying, “I might have MS, but it doesn’t have me” isn’t always true physically but it has to be mentally. Living with any disability eventually becomes a mind game. The ball has been thrown not only into my court, but straight at my head! I have to catch it, manage to throw it back, and get ready for the next shot that will inevitably come whizzing back in short order. The game is afoot!

May 2019

Survey Says…

May 9, 2019by amysaxons1 Comment

I hate to brag but I’m a pretty important person. No, seriously. And you should be a little worried. Here’s the lowdown.

Around late February of this year, after my reluctant but necessary full retirement owing to MS, I decided I was going to need something to do at home to keep me from going completely doolally. If you’re reading this then, for better or worse, you know the fruit of one of my endeavors – blogging. As much as I’d like to say I’ve thrown myself into writing and have become seriously self-disciplined, the mood actually only strikes once in a while. On a cheerier note, I’m probably not far from being a serious, internationally-ranked Spider Solitaire contender.

Obviously, I needed more. Something important that would better humanity. An avenue that would leave a lasting, positive imprint on the lives of others. So, I joined Survey Junkie.

Every day my opinions shape your world. I answer for the masses about real-world, important things, like what we really want from our toilet paper; the best logo for an underwear brand that captures the qualities of “durability and comfort”, the “two things we all want” from our undies; and have carefully chosen between proposed TV commercials to guarantee that the ad fairly represents the company’s commitment to keeping you “safe” while also making you look “prosperous”.

Some survey questions have been easy and fun, for example: Do you use slang? Fo’ sho’ At what age do you think it is no longer appropriate to you use slang? 89, ‘cause my Grandpa always said he was one cool cat who wasn’t afraid to get on the horn to coppers when he saw someone on the hooch who needed to go to the big house. Did you now that most people think anyone over the age of 26 should not use slang? Dude, that’s heavy.

Some questions have taught me that OCD has a functional side. Which restaurants have you or anyone in your household visited at least once in the last 12 months? One moment, let me just whip out my Alphabetized, Annotated, and Ranked by 5-Star Rating System of Restaurants Visited Between May 2018 – May 2019 list.

Some questions have been grouped into blocks and straddle between a screening test for Dementia and a social awareness questionnaire. Have you purchased potato chips within the last three months? Are you judging me? What brand(s) of potato chips have you heard of? What brand(s) haven’t I heard of?! Is it important to you that the company who made the potato chips contributes to better their community? You mean frying potatoes and/or corn into thin, tasty wafers doesn’t count as bettering the community?Would you consider changing the brand of potato chips you normally purchase if you knew a different company made more of a commitment to reducing their carbon footprint than your current chip company? What? I can’t hear you over the crunch of my Fritos.

Today I took an eight minute survey that was top secret. I had to agree that I would not reveal the name or contents of the survey among my friends or family, nor would I share anything about it on social media platforms. See, I told you I was important. I’m doing classified work.

Not only is my opinion important, but valuable too. In the last two months I’ve earned $22 and counting. The word is out that my opinions are great because I get between 10-15 offers a day to participate in a new survey. I guess you could even say I’ve become a professional at my new gig.

I’ve always known MS had a few perks, like getting to park in handicap spaces and sitting in reserved areas for my wheelchair at stadiums. I didn’t know that the virtually home-bound state it has left me in would one day lead me to this new and exciting career in the world of surveys. It just goes to show that every cloud really does have a silver lining. Oh, I gotta go, someone needs my opinion about which font on the wrapper of mini candy bars properly conveys the rich, creamy chocolate within!

April 2019 Posts

Shopping at Full Speed

April 28, 2019by amysaxonsLeave a Comment

Its bright red concentric circles beckon to land me squarely in the store. The aroma of freshly made popcorn and your choice of hot or cold, legally addictive, caffeinated beverages magically combine to infuse the air and make you feel like you want to stay a while. It provides ample opportunities to people watch a slightly trendier, but still as strange, menagerie of folks than it’s yellow-sparked logo competitor. At any given time, it probably has more tattoo and pierced skin shoppers with hipster haircuts than any other place in town. Home goods, furniture, clothes, undergarments, electronics, books, toys and games, food, candy, lotions and potions, a pharmacy, cleaning products, pet supplies, seasonal decor, greeting cards…pretty much everything a first world, middle class, 21st century human needs to function in our consumerist society.

I used to be able to drive myself to this shopping mecca and make my way through any aisle I chose at a leisurely pace. When my cart was full and I had breathed in all the buttery-laced air I wanted, I could stand around in the check-out lane with no worry of how long it would take to pay, walk back to my car, and put all the bags in the backseat before finally driving home. I could also bring the bags into the house, empty the contents, and, one by one, put them away into their respective places without care for how much energy I expended.

That was then and this is now.

It’s been well over three years since I dared to make this excursion on my own. Like so many other things when living with MS, doing activities on my own didn’t abruptly stop. My independence diminished similar to how individual flurries accumulate in a gently falling, long, slowly moving snowstorm. Flake by tiny flake they collected until one day I found myself buried under the avalanche of symptoms, and shopping on my own became yet another task that fell into the “insurmountable” category.

Nowadays, my hubby chauffeurs me into town and parks in one of the handicap spots conveniently located close to the door. He drags my wheelchair out of the trunk and together we spin our way through the store. I hate riding in those motorized wheelchairs with a basket on the front that beep every time you need to turn around or want to see something behind you. Instead, I’ve learned the art of balancing two handbaskets on my lap, fitting everything we need into them for the week. More difficult still has been learning to compromise and change our individually-preferred shopping styles in order to make our weekly Target run pleasant for both of us. I’ve (mostly) given up my insistence that he push me at a leisurely pace through each isle of my favorite sections. In turn, he has (mostly) stopped whizzing me so quickly that we leave two-wheeled skid marks on the tile. Sometimes we settle on him leaving me in one aisle near something I want to look at while he flies through two or three other aisles.

This approach has fairly easily carried over to other shopping venues like the grocery store and DIY stores. Someday I hope it will overflow into shopping for clothes at department stores, but I’m not holding my breath. I have to admit that watching someone else shop for clothes has a limited entertainment value. However, it is kind of fun to ride through the rest of the mall so fast that you can’t tell if the blue-haired people you pass are teenagers or grandmas!