amysaxons

Recovering From A Family Visit

June 18, 2019June 18, 2019by amysaxonsLeave a Comment

Hello again. It’s been a couple of weeks since I last posted. Hubby and I enjoyed hosting family the past couple of weeks. The last one went home early this past Saturday afternoon. I have been so tired since that, outside of going to see my Dad for Father’s Day and attending church Sunday morning, I’ve not left the house. I thought about writing yesterday but thoughts were slow to come. The blank screen just stared back at me no matter how long I stared at it.

My brain feels a bit less hazy today. I decided to try and lube the wheels with a few purposeful thoughts to scatter the entrenched cogfog.

The MS monster roared and paced around the perimeter the whole time we had company. Thankfully though, it waited to pounce and begin devouring me alive until the last couple of days of the visit. I’m actually fairly proud it took that long because it means I paced myself for a whole two weeks🥳.

Anyway, this short post proves I’m still alive and kicking. I hope to be able to write again someday soon, I’ve missed it.

Godspeed,

Amy

May 2019

I Want To Ride My Bicycle, I Want To Ride My Bike

May 28, 2019by amysaxonsLeave a Comment

I have had several “good days” in a row over the past few weeks! They may not have been anyone else’s definition of a “good” day, but to me they were. I have always tried to exercise in some shape or form each day for the past 26 years. For many years now I have been confined mostly to walking around the house for as long as possible before having to sit and rest. Once I have recovered, I walk around again, rest, and so on. My hubby is an avid cyclist and I have at various times tried to ride with him. I start out doing okay, but inevitably wear out in spectacular fashion because I refuse to listen to my body when it starts to get tired. As a result of my own stupidity, I end up having to stop riding for weeks or months.

In fact, the last time I dared to ride a couple of years ago, I became so utterly undone by the endeavor it took three solid months to come back to a baseline similar to the one I had previously. After that, I promised never to do that to myself again and put my bike away in the deepest, darkest, corner of the garage. Like someone lost in a foreign country and unable to speak the language, I just couldn’t understand that I could do more over time by slowing down or stopping before inevitably self-imploding.
I follow several MS related research websites and have recently noticed an uptick of studies related to exercise and its effect upon disease progression, regardless of which type the participants had. Of course, exercise doesn’t stop MS progression and disability, but it does have a positive impact. People who exercised to their fullest potential, even if wheelchair bound, retained more physical skills for a significantly longer period of time than cohorts who didn’t exercise on a regular basis. That got me thinking again about riding my bike.

I’ve certainly noticed a decline in my overall stamina, coordination, and balance for several months, despite my regular efforts to walk around the house. I’ve also heard myself repeatedly telling my husband how jealous I am of him being able to ride. I got to thinking maybe I should push myself to try cycling again. So, with a healthy dose of trepidation, I put my courage to the sticking place, and pulled my cobweb covered bike out of its long confinement, put some air in the tires, and set off on a short ride. I managed to get around our block five times in ten minutes before feeling the tug of tiredness. Yay for me!

Feeling encouraged, over the course of the last few weeks I’ve managed to slowly build up some stamina and increase the range I ride. I’d forgotten how delicious it is to feel the breeze on my face, to smell hay and wild honeysuckle in the air, and to hear the choir of various birds singing and chirping from electric lines and treetops. I’d also forgotten how it feels to get my heart rate up, feel the burn of long unused muscles, and enjoy the rush of endorphins when finally finished.

There have been days when I’ve only been able to ride for a few minutes. For example, my ride this morning was abbreviated because fatigue set in pretty quickly. I had a feeling I wouldn’t make it long since my legs were already heavy and slow to respond to the demands of walking. However, two days ago, I was actually able to ride for 37 minutes! Perhaps you saw or heard about Kayla Montgomery in the news a few years ago. Kayla’s a young track star who runs races despite the fact MS has left her unable to feel her legs. When the race is over, she collapses into her coach’s arms unable to get up or walk for several minutes or hours. Well, that’s pretty close to how I am after each ride. It requires a lot of resting before moving on with my day and attempting to conquer other tasks like cooking or folding laundry. I’m trying not to be afraid of what will happen in the future with my MS. I’m going to do my best from day to day trying to obey the constantly fluctuating whims and fancies this dumb disease dictates because I want to be able to continue to enjoy the ride for as long as possible.

May 2019

Alive, Though We Sleep

May 14, 2019July 21, 2020by amysaxonsLeave a Comment

I lost my Mom 3 ½ years ago. The combination of Mother’s Day and Memorial Day makes May a particularly tough month for me. Sadly, the last few months have been full of loss for several of the people I love. Some have lost spouses, others children, as well as parents, siblings, grandparents, aunts, uncles, nephews, nieces, and cousins. A few have in quick succession lost combinations of special people from this list.

Grief is strong. It can make us feel like we have been imprisoned within its walls with no window for light and no hope of escape. Regardless of whether you believe in God or not, we all live our lives knowing we and our loved ones will one day die. For those of us who believe in Christ and His promises, we pray our daily prayers in anticipation of death, and we sing songs of joy about how wonderful the moment will be when our faith becomes sight.

Even so, when death comes to our loved ones it rocks our world right down to its very foundations. All those songs of joy and all those prayers offered in hope suddenly mingle with the sting of pain, sorrow, anger, fear, regret, denial, or despair. We’re lonely. Death seems so final.

How do we go on? How do we ever feel happiness again?

Christ speaks of death as “sleep”, something you will wake up from, not an everlasting state. Remember before He raised a young Roman ruler’s daughter from the dead, He told all those who had gathered to grieve the family’s loss, “The girl is not dead but asleep.” (Matthew 9:24)? Again, about Lazarus, he told His apostles, “Our friend Lazarus has fallen asleep; but I am going there to wake him up” (Jn 11:11).

Christ was about to perform a miracle that not only proved He was sent from the Father (vs 42), but also demonstrated in a physical reality the spiritual lesson that we live beyond death. Four days after Lazarus died, He went to the town where Lazarus and his sisters lived. He then revealed a truth to Lazarus’ sister, Martha, that continues to this day to fill the heart of every Christian with hope. John 11:25-26, “I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die.” As both a demonstration and a confirmation that He had the power over resurrection and life, “Jesus called out in a loud voice, ‘Lazarus, come out!’. The dead man came out, his hands and feet wrapped with strips of linen, and a cloth around his face.” Of course, Jesus went on to manifest His ultimate power over death and the ability to give spiritual life when He rose from the dead of His own accord (Matthew 28:1-15; Mark 16:1-14; Luke 24:1-32; John 20:1-18).

Every book of the New Testament has this truth as its cornerstone. Paul in particular expounded more deeply upon this idea of death as “sleep”. In I Corinthians 15:20-22 he wrote, “But Christ has indeed been raised from the dead, the firstfruits of those who have fallen asleep. For since death came through a man, the resurrection of the dead comes also through a man. For as in Adam all die, so in Christ all will be made alive.” Again, in I Thessalonians 4:13-18, “Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope. We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord’s own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord Himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And we will be with the Lord forever. Therefore encourage each other with these words.”

Matthew, Mark, and Luke all record Christ as saying that God’s children “are children of the resurrection” and “In the account of the burning bush, even Moses showed that the dead rise, for he calls the Lord ‘the God of Abraham, and the God of Isaac, and the God of Jacob.’ He is not the God of the dead, but of the living, for to Him all are alive.” (Luke 20:35-38). We also know the apostles Peter, John, and James saw Moses and Elijah talking with Jesus during His transfiguration, as again recorded in the three gospels indicated above. Moses and Elijah were not dead, but recognizably alive!

In Romans 14:7-9 Paul beautifully summarizes why we as Christians do not need to be afraid of death, feel sorry for those who have died in the Lord, or as quoted from I Thessalonians above, “grieve like the rest of men, who have no hope”. He wrote, “For none of us lives to himself alone and none of us dies to himself alone. If we live, we live to the Lord; and if we die, we die to the Lord. So, whether we live or die, we belong to the Lord. For this very reason, Christ died and returned to life so that He might be the Lord of both the dead and the living.” Alive or dead, it just doesn’t matter. Despite the fact we humans can’t see beyond death God does. He sees His children both here on earth and those in heaven as the same thing – alive!

I keep these wonderful promises tucked away in my heart. I hope they bring as much comfort and joy through sorrow to you as they do to me.

To the praise of His glory!

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

Guilty as Charged

April 30, 2019by amysaxons1 Comment

I tend to be a rule follower and a planner. I obey authority figures. I respect laws. I’m the annoying person who reads all the directions, twice. I look at maps before heading somewhere new. I lay out my clothes the night before and meal plan at least three days ahead. In other words, negative consequences are generally a sufficient deterrent to keep me on the straight and narrow. Well… almost always.

Sometimes a person has an obligation to disobey, and in a calculated, planned coup, rage against an authoritarian, oppressive regime, even if the result is certain defeat.

In this spirit, I make the following confession: I, Amy Renee, did purposely, and with a full understanding of the probable outcome, defiantly spend 15 minutes weeding the landscape in the front yard on the afternoon of April 27, in the year of our Lord, 2019.

Statement of Reason: The landscape was rife with nefarious weeds that had invaded upon my property. On the date in question, the sun was shining and the sky was a beautiful, clear blue which did beckon me forthwith to act upon the foreign invaders.

Defendant’s Previous History: The defendant has a long history, dating back 29 years, of rebellion against the established rule of law, specifically related to over exertion.

Sentence: As the indicted has, of her own admission, willfully and knowingly acted against the long-standing, acting, dictatorial powers of Multiple Sclerosis, she shall be sentenced to between three days to two weeks of excessive fatigue, difficulty walking independently, embarrassing clumsiness, and intermittent loss of bladder control.

The court would like to ask the defendant how long it will take her to learn her lesson. “Probably forever, your honor.” It certainly seems so. Court dismissed.

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!

April 2019 Posts

Tales of the DMV

April 5, 2019April 10, 2019by amysaxonsLeave a Comment

Getting my Real-ID has been Real-HARD for me. I had to make five trips to the DMV within a 24-hour period and still have to go back again. I saw several familiar faces each time I returned, people who, like me, either hadn’t brought the right combination of paperwork or had to come back because the statewide server broke down.

Both days found the place stuffed full of Americans across the gamete of lifestyles and social classes all trapped together in a small area for about an hour. I distinctly remember a man with no teeth and a Disney character tank top sitting beside a businessman in pressed trousers and a starched shirt; a “What’s wrong with putting America first?” T-shirt wearing man next to a couple of Polish speaking ladies trying to get car tags; one parent with two feral children running and screaming in and out of the rows of chairs asking questions about school to a parent whose children were quietly sitting beside her; and a crusty, bushy-bearded man reeking of stale, cheap cigarettes squashed up against a lady with a designer track suit, perfect nails and hair, a bit too much perfume, and a lot too much make-up. These characters, along with your average Joes and Janes, made up the rotating, but constant of 20 or so folks waiting their turn. Despite the obvious, visible differences, one could tell we all had the same desperate hope, that we had brought enough pieces of paperwork in the correct combination to get us out of there!

The five ladies who worked behind the counter were the quintessential DMV employees you see in movies or on TV. One was very pleasant but must not have been working there very long because she had to ask her co-workers questions for virtually every transaction she made. One was peppy and seemed to get through two times as many people as all the others combined. One was very matter-of-fact, a little cold, and didn’t seem too worried about customer care. One was earnest and nice, but was flustered easily and didn’t look to have many tools in the tool shed, if you know what I mean. And then there was the maniacal one who I honestly think took secret joy in telling people they didn’t have the correct paperwork and they would have to come back. She “helped” me on my third visit by telling me I would need to bring in a copy of my marriage license, emphasis on copy. When I came back with my license in hand and had spent another 45 minutes waiting my turn, I was called to the cubicle of the pleasant lady who probably hadn’t been working there too long. I gave her my paperwork and when she came to the marriage license, Maniacal Lady took it upon herself to, without being asked, lean over from her own cubicle into that of the person who was helping me. Maniacal Lady took a cursory glance at the copy and, with a smile on her face, said it didn’t look like it had the proper seal and that I would have to order another one from the State Recorder’s office in Jefferson City (our state’s capital). As she said this she looked me straight in the eye, raised her eyebrows, and shook her head as if to say, “I have the power to make your life miserable and I like nothing more than watching all the hope vanish from your eyes.” (Did I mention this was my fourth trip?) Because Missouri has an extension to become compliant for Real-ID until October 2020, and because I was more frustrated than I can remember being in a very long while, I opted to just get a regular driver’s license and come back another day to try again.

I actually cried on the way home–I couldn’t help it. I felt like I was seven years old and had been wrongly blamed for something I didn’t do, but couldn’t find the words to explain the truth. I’m sure the deepening fatigue I was now feeling didn’t help. The only thing that could come out was tears.

Each time I had gone to the DMV a different person helped me and told me something different than the previous one had said. I checked the list of requirements on the state website and thought I had all the pieces it listed as necessary. After that visit, the fourth one, I finally called the county recorder’s office and learned I had brought in all the correct paperwork and that I wasn’t the only casualty of the local DMV. Apparently there has been ongoing confusion among the DMV staff about what qualifies as an “approved copy” of a marriage license despite the county recorder going over in person to train them.

Armed with this new information, I found myself getting back in my car, limping myself up to the counter without bothering to take a number, and sharing this with Nice Lady who had helped me before Maniacal Lady butted in. Living up to her moniker, Nice Lady was very kind, didn’t scold me for butting in line, and set about trying to sort it out for me. She went over to tell Maniacal Lady what I had discovered, but Maniacal Lady didn’t believe it. Eventually, a call was placed by Nice Lady to Jefferson City for a final verdict, and…I was right! Maniacal lady was WRONG! Her face dropped when she found out and for just a brief moment I thought I had won the day and could get my Real-ID completed. I was wrong. Maniacal Lady rallied quickly, fixed her eyes hard on me, and with an all too familiar look, raised her eyebrows and shook her head, as she leveled her last words to me, “You still have to wait 10 days before coming back to get your Real-ID license because you got a regular license earlier today.”

I hope I get Maniacal Lady when I go back. I plan to smile my biggest smile and politely say, “We meet again.”