#LivingWithMS – Page 7

December 2019, January 2020

Ringing Out the Old and Ringing In the New

December 31, 2019December 31, 2019by amysaxons

As December slips into January, there is a distinct sense that, like a snake who sheds its skin, one can somehow shed themselves of their outgrown (sometimes quite literally 😉), unwanted self for the skin of a fresh, new hope and beginning. I suppose some people might feel this way on their birthday, but birthdays are typically associated with wishes, not resolutions.

This past year started with one of the largest, deepest dives into the underworld of MS that I have experienced thus far. There were times I felt like I didn’t have the breath to hang on until I broke the surface for a life-infusing gasp of even a few good hours strung together. I wrote about this experience back in February in my very first blog post, The Ocean. As hard as it was to get through, the benefit was intimately feeling the presence and comfort of God in profound ways hitherto unknown to me. I didn’t make a resolution for 2019 to be a year of spiritual growth, but as a direct result of how hard it was, it turned out to be exactly that.

Resolutions denote a need for a change and a conscious effort to make the change happen. I’ve made a few New Year’s resolutions over the course of my life with varying degrees of success. They have always been about things over which I have control, like losing a few pounds, exercising more, being more circumspect about what I say, reading more and watching less TV…the usual stuff.

This year, 2020, marks my 30th anniversary of living with MS. After my initial diagnosis, and except for a couple of relapses, the first 10 years were relatively, blissfully easy. I had absolutely no concept of what it would eventually be like to live with MS as my daily parasitic sidekick. Sometimes, even now, it still surprises me by how far down its tentacles have reached into my life.

Most gratefully, as 2019 progressed, I recovered enough to have some good days sown in among the bad. This too was a lesson from God about gratitude and hope.

The lessons learned and the spiritual growth God has blessed me with will serve as a lifeline, like pure oxygen, to whatever the New Year throws at me. So, I resolve to take each day of 2020 as it comes, resting upon the One who created time but is not bound by it.

I hope you take the time to look back over your experiences of 2019 with a view to how God has worked in your life. If you don’t see Him there, then there’s no better time to invite Him to share not only 2020 with you but the rest of your life! Get in contact with me and I will gladly help you get started.

May God be with you in the new year, my friends!

December 2019

Life On the Boil

December 8, 2019December 8, 2019by amysaxons

Somehow, every time I steam vegetables on the stove I manage to get busy with other meal prep work and look away at the exact moment the water starts to foam and boil over. It leaves an icky, mucky mess on our glass stovetop that requires a lot of elbow grease to clean up.

The entire month of December can sort of feel like this, too much to do and not enough time and energy to do it all. Pageants, musicals, parties, decorating, cooking, shopping, wrapping, organizing, traveling… the list is endless and it comes on top of our usual work, church, and family duties. In an effort to create and maintain memorable traditions with our children, family, and friends, it seems we overextend ourselves. Stress begins to boil over, taking away the joy of the season and making us feel like a mess on the inside.

These days, Christmas or not, many people choose to live their lives set on a constant boil. Every spare moment of time is filled with activity and on the go. I don’t want to leave the impression that it’s wrong or bad to have a full calendar. I suppose I used to do that too when I still could. It felt good to be busy with school and church activities, going to the movies or hanging out at a friend’s house, attending concerts, having dinner out, or just riding around town with my best pals. It was fun being away from home and it felt as if I was seizing the opportunity to really get my money’s worth out of every moment of life.

I don’t want to go back and change much about that time in my life, except that I wish I would have weeded out some of the empty, self-indulgent things I did in a mindless effort to keep life bubbling away. Instead, I would have benefited from some unfilled moments so I could study, reflect, and work on my relationship with God.

Thanks to MS, I rarely live life on the boil anymore. Most of my days are somewhere between a long, slow, gentle simmer and stone cold. Amazingly, just as with food, there is as much nourishment and fullness in life whether it’s served hot off the boil, warm from a good simmer, or cold straight out of the fridge.

On most days, I am glad life has slowed down. It has allowed for me to boil life down to the essentials instead of life boiling me down. Yes, sometimes it’s true that I would like to have a bit more boil and a little less cold, but the joys of life can be savored either way.

My wish for you this holiday season is that you purposely carve out some quiet time to grow your relationship with God. You likely won’t find Him in the chaotic, hectic, hubbub of festivities, but in the quiet stillness of a holy night about 2000 years ago.

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.

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.

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!

April 2019 Posts

Completed!

April 22, 2019by amysaxonsLeave a Comment

The shower project is finally done! It took four additional weeks to finish beyond the originally estimated three, but it looks great and works even better. My favorite part is definitely the little corner seat, it’s made bathing much easier for me when I am tired. (See pictures below.)

Allegedly, the bedroom carpet install and stretching of the closet carpet is scheduled for this Thursday. Just two more major pushes to go and everything will be back to normal! I guess we will be moving everything from our bedroom to the living room Wednesday evening then turning around to move it all back in Thursday evening. Even so, the light at the end of the tunnel is gleaming brightly. It will feel good to be able to use our closet again, too. We will never again take the small, convenient creature comforts of home for granted.

The fixtures were in about a week and a half before the door and window glass were installed. It was a long wait!

The fixtures are an easy reach from the seat.

The door and window were the final pieces of the puzzle.

The window adds some extra light and some bonus space on the sill.

April 2019 Posts

Freedom, My Old Friend!

April 15, 2019April 15, 2019by amysaxonsLeave a Comment

Crushed on the couch because I got dressed. My legs are telephone poles, it’s going to take a Mack-Truck to move them. Each arm is a 500 lb bar-bell. The remote is just a couple inches away. My brain keeps saying “reach out and get it” but nothing happens. I can’t sit up, I can’t even raise my head. It takes all my energy to blink my eyes. My mouth is open, too slack to close and it takes all my concentration to muster enough energy to swallow. One hour down, now three. I can hear. I can see. I know I am breathing. I can’t feed myself, maybe in the next hour. My chin itches but I don’t care, I’m too tired to scratch it. It’s four hours now. I think I can move my hands. Yes, but my fingers aren’t strong enough to push the buttons on the remote. Maybe 30 more minutes will do the trick. It was all noise before but now I can make out the words from the music playing on TV. I like this song, I don’t need to change the channel. Todd pulls me up so I can sit. Easy does it. Just enough energy to feed myself. The drink is too heavy to lift, but I can sip through a straw. I have to lie back down to rest. Two more hours pass but at least I can follow the plot of the show Todd’s watching.

MS Fatigue is not the same as being tired. You are tired when you expend a lot of energy, like overworking in the garden, or when you don’t get enough sleep, such as pulling an all-night study session before a test. MS Fatigue has nothing to do with sleep or overwork, it is present no matter what, and it is so oppressive no amount of will-power or positive thinking exerts any difference over it. It takes you and holds you prisoner in a nearly unresponsive stupor, virtually catatonic. Sometimes the excessive, paralyzing, worst form of fatigue enters and exits daily. Other times, it comes and goes like a distant relative you only see on holidays or special occasions. I hate it. I don’t have the vocabulary to explain it. I dread every time it visits. It doesn’t wait for invitations, it just shows up and demands an audience. I’ve been under it’s stern, cruel rod of chastisement more times than I can count. It doesn’t get any easier, BUT I know it won’t last forever. It will eventually ease and, though it may seem reluctant at first, let go of it’s vise-gripping, soul sucking, strangle of me and let me breath the air of freedom again.

(Inhale) Freedom, (exhale) my old friend!

April 2019 Posts

MS Walk 2019 is in the Books

April 6, 2019April 6, 2019by amysaxonsLeave a Comment

It turned out to be a BEAUTIFUL day to take a walk, a very special kind of walk. There was a huge community turn out for the MS Walk, full of friendships both old and new. Several friends from church got together and created a team, Amy’s Axons, in my honor without me even knowing about it! Owing to such a kind and loving act, the walk this year was extra meaningful to me.

Highlights included – the Central High School Kilties marching us out as the walk began, Hurts Donuts, Einstein Bagels, lunch catered by Los Cabos, a variety of vendors raising money for MS, and a live band, just to name a few.

It’s always encouraging to see others living with MS supported by friends and family on their teams. I had the opportunity to meet a couple of people who also have MS. Both of them, like me, stressed how much they relied on their friends and family support in order to live with this disease. This fact can never be emphasized enough, without the help and kindness of others I would be unable to live on my own.

Many advances have been made in recent years in the quest to understand and treat MS. A recent report revealed that the number of people living with MS in the USA was around a million, nearly twice what had originally been thought. Now, more than ever, we need to find a cure!