The Day After I Toothed My Brush

I was wiped out after 8 1/2 hours at the hospital getting my 4th Ocrevus infusion yesterday. The first three hours were spent waiting for the pharmacy to compound the drug and get it up to the unit for me to take. At a whopping $100,000 a pop they won’t start getting it ready until the nurses call and say they see the whites of my eyes.

Dangling an IV, waiting for the Ocrevus.

My head ached all afternoon and evening and I struggled to make sense. My favorite was when I told hubby I had “toothed my brush”and was ready for bed…at 8:30. I slept pretty good until about 4:40 this morning. – thanks, steroids I laid in bed daydreaming while snuggling Laudy and finally gave up and got out of bed around 5:40. I’d had three cups of coffee, eaten breakfast, read the news, showered, and was dressed all before I normally get up.

It’s been a long, slow day of flushing from the steroids and a still relentless headache as a side effect of the Ocrevus. It usually takes about 3-4 days to feel normal again. In the meantime, my arms are full of cats and there are plenty of birds at the feeders to entertain us.

The steroids are seeping out but the company is good.

I’ve pasted a link to my personal Walk MS page. Please consider making a donation, it would mean so much to me ☺️. I’m already a little more than halfway to meeting my $1000 goal. It’s way past time to find a cure! https://secure.nationalmssociety.org/site/TR/Walk/KSGWalkEvents?px=18236733&pg=personal&fr_id=31565

Thanks for stopping by. May God be with you! ❤️, Amy

Doctor Day Dread

I don’t like “doctor day”.  I have one with my neurologist every six months, at least.  I had one today.  Although she is the best doctor I have ever had, has seen me through some really rough MS transition periods, and I like her as a person, I dread going to see her.  Though I live with MS and all the limitations it enforces daily, seeing a doctor specifically for the disease always brings the horribleness of it to the fore.

Firstly, I drove myself to the appointment, which required two days of vigilant rest in order to scrape enough energy together to do so safely.  I got home completely drained and, six hours later, I’m still sitting in the recliner exhausted.

My walking is worse so I get to go to physical therapy…again.  I’ve had P.T. several times over the last 30 years – something else to drive to.  It’s worth a shot though if they can help fix the hitch in my “get along”, causing pain in my hips and spasms in my legs.  I know I need to work on my balance and coordination, as well.

We discussed my bladder and the medicine change the urologist suggested – it’s always fun to talk about your bladder.  She said she wished there was something to do for the interminable, insufferable MS fatigue but it’s just part of it.  And, despite my trouble walking and the need for a cane, she said I’m lucky to still be able to walk after 30 years.  She said it’s likely due to the fact that I have dauntlessly exercised in some form or fashion nearly every day for the duration of my diagnosis.  Nearly all her other patients have moved to motorized wheelchairs this late in the game.

I’m going to get my next Ocrevus infusion the first of March, Lord willing.  My doctor told me to continue to stay away from people from now until four weeks after I get the medicine, after which it should be safe to get the Covid vaccine (if I can find one available).  As an aside, there was a lot of initial concern over whether Covid vaccines would be safe for people taking immunosuppressant MS drugs.  Thankfully, it has been deemed safe and, though they may blunt the full effect, they still seem to work their magic.

Seeing my neurologist is a reminder of all the fear and uncertainty that surrounds the future living with multiple sclerosis.  I wake up every day wondering what kind of day it will be.  Will I be able to walk?  Am I going to have enough energy to make lunch and dinner?  I try to take it one day at a time, and I usually succeed.  However, when I see the doctor I have to look back over the last six months or year and compare how I am now to how I was then.  The last several years, as the disease has slowly progressed, I see changes that are not pleasant to look at but over which I have no control. 

No one knows what the future holds, I know that.  It may or may not be as bad as I fear it could be.  I pray for a cure.  Realistically, I think they will have to figure out what causes it in the first place before there’s a cure.  It’s hard to win against an unknown, moving target.  So much more is known now than ever before and there are some solid theories about what triggers the onset and drives the progression of MS.  I hope I live to see the day when no one else dreads “doctor day” because of multiple sclerosis.

August Is About to Adios

August has provided us several opportunities to enjoy time outdoors, as the pictures below document.  We had a few unseasonably cool days for this time of year that allowed me to get out of the house and explore a few outdoor spaces close to our house.  I ramped up my own self-isolation the past couple of weeks in anticipation of my next Ocrevus infusion.  Matter of fact, I am writing this in the hospital while the O-juice goes in.  The drug was supposed to start dripping at 8:00 but it got held up in the pharmacy until a little after 11:00 😖.  It takes about five hours to infuse then I have to wait an hour before I can leave, so it’s going to be a long day.  Even so, I’m thankful to be getting it at all since so many others with MS don’t have any options this late in the game (#30yearsofMS).

Hubby had a couple of weeks off between semesters so he tackled restoring the fence around our backyard.  The days he worked on it were boiling!

In no particular order, Pip and Laudy have become my favorite muses.  I am still enjoying my new hobby.
This bee probably thinks the center of the daisy is as big as the moon.
I think this is a strawberry clearwing.  I found all the following insects around the lake park in our neighborhood.
I can’t believe how good the pictures turn out in sports mode, very clear images in motion.
Buckeye butterflies are plentiful around the water and are a personal favorite.
Swallowtail
I especially loved finding these amberwings ❤️.
Jimmeny Cricket!
Ugh, I stepped off the path to get a good shot of a flower and ended up being covered in these little burrs 😖.  It took 30 minutes to pick them all out of my hair and off my clothes.  How they got in my hair I have no idea!

The road back home from the river. 

I have had a lot of things floating around in my mind to write about, but I haven’t decided if I want to share them or not.  Writing is very pleasurable and cathartic for me and I want to guard it so it remains that way.

May God be with you. ❤️, Amy

If Only

The whole world is mad enough to chew nails and spit rivets at each other.  The wildfire of anxiety already fueled by a viral pandemic and financial hardships has roared into an inferno fanned by outrage over racial injustice.  Add all of this to an overly politicized, deeply divided, radically idealized, and seemingly diabolicaly opposed Left and Right presidential election year and, voila, here we are.  McCarthyism (“The practice of making unfair allegations or using unfair investigate techniques, especially in order to restrict dissent or political criticism.” – Dictionary.com) turned into Cancel Culture (“The popular practice of withdrawing support for public figures and companies after they have done or said something considered objectionable or offensive.” Dictionary.com).  Unsurprisingly, we (collectively as humans) have learned absolutely nothing from God or history on how to get along with each other.  Like sheep, we’ve all gone astray.  The only difference between us and sheep is that we like to point and call out the wrong courses everyone else has taken, but never look back at our own errors.

As a result, I’ve been rationing my news intake and limiting my time on social media platforms.  I can’t take all the lava-hot words and vitriol spewing out of the mouths on all sides of the world’s current, self-inflicted problems.  I don’t know how to heal or even understand the differences of opinion and the vast chasms that seem to lie between the logic and thinking of some of us.  So, with that admission, what can I do?  I have been and will continue to lay them down at my Father’s feet.  He is the answer to everything, always. God excels in doing what everyone says is impossible. 

I’m doing the same on a personal level.  While the huge fires of the world keep burning, so too do the little flames within my life.  I’m sure you understand because we’re all the same.  My personal fire is called MS but yours might be named such things as Furloughed, Job, Money, Stress, Anger, Divorce, Death, Parent, Child, Spouse, Cancer, Diabetes, Aging… just about anything, really.  For me, MS is constantly melting away tiny pieces of my own sovereignty.  It’s very difficult to let go of the things in life that make you feel like you have some control, such as driving, shopping, cooking, and walking. 

In much the same way that I realize I can’t put out the MS fire in my own life and deal with the destruction it leaves in it’s wake on my own, we, as a nation and even world, must understand we will have to work collectively to bring the flames of our society back under control.  The solution will not be conceived in fear of an unseen germ, worry over the next great depression, or riots that break our neighbors’ windows and loot their livelihoods because of injustice.  No, if it could then we would already have the answer.   The fix is to be found in love.  The kind of love the apostle Paul described in I Corinthians 13:4-7, the sort God has for us.  His love is patient, kind, happy for others instead of envious, lifts others up instead of boasting about self, is well mannered instead of rude, seeks the good of others instead of self, is slow to anger, keeps no records of wrongs, delights in holiness instead of evil, rejoices in the truth instead of sensationalism, always protects, always trusts, always hopes, and always perseveres. 

I realize what I am about to say is very Pollyannish of me, but…  If every person would recognize the truthfulness and wisdom of this type of love and make it their own personal goal to practice it, without policing others and how they are doing as they attempt to do the same, all the infernos of the world would simply burn themselves out.  If only.

Goodbye May 2020, Don’t Forget to Take Your Germy Germs With You!

Goodbye May 2020, Don’t Forget to Take Your Germy Germs With You!

Below you will find a few more pictures from the scrapbook of our May under CV-19.  We have completely settled into our new home and are grateful to be here, virus or not.

Tis a pleasure to live in the Ozarks!
We went for a drive in the country on Memorial Day.
Slowly, restaurants in our neck of the woods are opening back up.
Napping buddies.
We’ve had a lot of rain and storms the last few weeks. I see a lily in the clouds, can you?
This little house finch found a good spot to shelter during a heavy downpour.
One of my favorite backyard views.
A friend from church gave me this beautifully fragrant peony…
…and this old world rose.
After some research, I got a couple of new, weighted feeders and a different suet feeder. The seed feeders are on a spring that closes the seed ports when triggered by anything greater than the weight of a couple of finches. I also changed the kind of seed I put out and stopped spreading it on the ground. It has worked to cut off the riffraff grackles, crows, and brown headed cow birds.
Robin
Eastern Bluebird deep in thought.
Mourning Dove
Cardinal
Purple finches, female and male
House finch
Carolina Chickadee, I think. It’s hard for me to tell the difference between a Black-capped and a Carolina.
Chipping sparrow and blue bunting
Red-bellied woodpecker
Downy woodpecker
One of our neighborhood squirrels hanging out on the fence.
Our newest critter, an eastern chipmunk
My very favorite animals, Laudy…
…and Pip!

We’re ready to ease into June with fewer restrictions and, hopefully, greater normalcy. May God be with us one and all! ❤️

Life During the Time of Corona through My Camera Lens

A quiet lane a block or so from our house.
Along the quiet lane.
Dogwoods in all their glory.
Spring comes alive in our backyard.
Our neighbor’s tulips
Blooms in our backyard.
Our neighborhood has a small lake with a walking trail around it.
A bit of sunbathing.
Breathing new life into our old iron rocking bench.
😂
My stepmom gave me a cutting from a plant my sister Glenda gave her 20ish years ago. Glenda died in a car wreck 14 years ago next month. It’s a happy coincidence the pot she put the cutting in matches the lawn ornament behind it 💙.
I added a few bird feeders last week and they sure have been busy!
To the left…
…to the right.
Momma Tree Sparrow and…
…baby in one of our nesting boxes.
White-throated Sparrow
Downy Woodpecker
This Nuthatch is a new visitor, I get so excited every time it visits.
Goldfinches are a favorite of mine.
Such a cute baby Goldfinch!
We have a pair of stunning Bluebirds nesting in one of our boxes!
Momma Cardinal sporting a beautiful crest.
This little fella thought “crest” meant a mohawk!!
We’ve had a lot of House Finches at the feeders, they sing and chirp until you can’t help but smile that God created such marvelous creatures!
(Female House Finch)
Elegant and gorgeous Mourning Dove.
I think this dove may have a birth defect. He comes around a lot and I’m always happy to see him. I’m rooting for him out in the great-wide world.
Hubby has kept himself busy with chores…
…fun…
…making labs for students…
…and teaching from home.
Meanwhile, my life under the shutdown looks exactly like it did before Coronavirus. I always have a cat nearby and I don’t leave the house very often. I guess MS has been good for something, it’s made surviving the shutdown easy-peasy for me.
I’m still sewing when I have the energy, but I have swapped my usual tasks to making masks. As ever, Laudy supervises my work.
Pip as my parrot 😉.
LOTS of napping!
Yes, I did cut my own hair 🤫🤭.
I’ve been using my foot pedal a lot these days. My MS has been a beast lately, but I’m determined to keep moving by hook or crook.
We celebrated Hubby’s birthday on the 20th of April…
…and mine on the 22nd. (I forgot to take a picture of the donuts we had for Hubby’s breakfast.)
Texas Roadhouse for dinner on my bday 😋.

We’re both ready for the current madness to end and return to whatever the new normal will be, I’m sure you and yours are too. Stay sane, safe, and healthy, we’re all in this together together ❤!

Can’t Catch Me, ‘Rona

Hi everyone, I hope you are healthy and virus free. I may not know your name, but I have been praying for everyone to make it through this this pandemic and the extensive economic impact related to the shutdowns it has caused.

Like so many others, Hubby and I are living under a stay at home order from both our county and city. Hubby teaches at a local community college and got an extra week’s worth of spring break while officials and tech got their ducks in a row. He will be teaching all of his classes online from home starting Monday. He’s been working hard to get ready since making a shift from seated Physics classes with labs to an online platform for both has taken a lot of prep and creative thinking. As always, my brilliant, hardworking guy has it all in hand and is ready to go.

Meanwhile, I’ve been labeled “vulnerable” and the only “essential” thing I can do is help prop up the local economy. Hubby has been pitching in and we’re taking our duty very seriously. For example, we’ve driven through Andy’s Frozen Custard on three occasions in the last couple of weeks for Thin Mint concretes.

The following is a collage of snapshots showing how we’ve been riding out this unprecedented time in history.

Hubby’s days have included cycling and projects and then more projects and cycling. Oh, and probably like everyone else, a lot of surfing of both the inter-web and channel varieties.

I’ve been hobbling along with Salonpas pads stuck all over my legs trying to get my MS related muscle spasms under control. I’ve also managed to get some sewing done, including the cat-themed wall art, with a bit of help from my two favorite felines. Our new house has a lovely patio out back and I have been been putting some miles on my new rocking chair, “See-Saw”, every chance I get!

A lot of time has been devoted to loving and being loved by, well, CATS.

I love to bake and have taken advantage of having my favorite taste-tester home with me every day. Scones, bread, muffins, biscuits–we have more bread and baked goods in our freezers than Panera!

What joy it has been this spring to watch the birds come to our feeder and move into the three birdhouses we have in our backyard! I have enjoyed snapping pictures of all the different varieties and then editing them. We have a pair of Eastern Bluebirds nesting in one house, sparrows in another, and juncos in the third.

We’ve had a mild, rainy spring and the trees and shrubs have started blooming and budding everywhere. It is beautiful to see all the colors painted across the landscape, whether rain or shine. As the back of our house faces due east, it’s been a treat to watch the sun’s orange glow as it spreads across the sky in the mornings. We added some color ourselves this week with a few flowers for the beds.

I hope you have been able to find joy despite the ‘Rona fear that has gripped the hearts and minds of the world. I encourage you to turn off the constant news feed and find a way to enjoy the people in your home and your surroundings. Remember God’s promise after the flood, “As long as the earth endures, springtime and harvest, cold and heat, summer and winter, day and night will never cease” (Ge 8:22). It’s true, regardless of ‘Rona, springtime has come just like God promised. May we all live in the light of God’s promises, not in the darkness of the fears in the world.

Hunkering Down

As Covid-19 spreads and the race to flatten the curve accelerates, the restrictions and confinement many find imposed upon them sounds pretty much like everyday life to many of us living with Multiple Sclerosis or other debilitating diseases.  We’re used to rarely leaving home unless someone else drives us, and filling endless hours by ourselves at home, day in and day out.

If you’ve started feeling stir crazy and like you’re under house arrest, the feeling will ease up somewhere around the end of the fourth or fifth week.  It might take a little longer if you aren’t already a homebody. After you’ve finished all the projects around the house you’d been meaning to do but hadn’t gotten around to, you’ll enter phase two otherwise known as Netflix Binge Watching.  This lasts only as long as either, A) you hit your own limit of slothfulness and drooling, and your once comfy jammies grow so tight your seams start to rip OR B) your loved ones can’t handle your funky odor, your cheese curl tainted fingertips, and having to preen Apple Jacks from your oily hair anymore.  If you or a loved one have already entered Netflix Binge Watching take courage, phase three is all about self-improvement. You won’t be able to resist the urge to do something to better yourself after all that slovenliness. So, you’ll do something to make up for it, like trying to learn a new language, take up painting, try your hand at beekeeping, attempt to learn how to play an instrument…you get the idea.  This is going to be a tricky one because this stage usually requires going out and spending a lot of money for all the bells and whistles required to do whatever kind of self-improvement you’ve chosen. Let’s hope Amazon doesn’t end up having to limit deliveries to nothing more than “essentials” just as you enter this phase of confinement. Hint: You may need to be mindful of this possibility and purposefully rush through the first two stages 😉.

At any rate, you’ll know you’ve reached the final step in accepting and adapting to your captivity when you wake up to a limited list of things to do but manage to accomplish them to the hum of some unbeknownst internal circadian rhythm.  Everything just sort of falls into place and POOF, your day has passed without really knowing where it has gone.  

Naturally, you’ll be glad when all this self-quarantine business is over and you can finally get back to your “normal” life.  Shhh…you can then quietly but permanently shelve all those Portuguese workbooks and apps you bought a few weeks back and of which you never got past lesson two.  Once your freedom to come and go as you please is restored, you won’t take for granted your reinstated liberty anymore. You’ll remember how it felt to be stuck at home for days on end with nowhere to go and nothing to do.  Hopefully, that will be the closest you will ever get to understanding just a fraction of one component of what it’s like to live with MS.

There are actually a lot of others who, like me, have found themselves sequestered on a full-time basis owing to some disease.  If you end up going through some or all of the stages I described above, I think you will come to a deeper appreciation of the strength required to live life within the confines of the same four walls day after day.  Kudos to all my comrades who have the strength to go on living life to the fullest under difficult circumstances. I don’t know what the name of your kind of Strong is, but mine is MS Strong.

Undone

We placed our house on the market three weeks ago and every day since has been like living in some alternate reality.  The endless cycle of picking up, putting away, wiping down, and clearing out in order to hide the fact two cats and their humans live here had grown old by the second day. I’ve seen vlogs of people on YouTube who want you to believe they happily clean their house every day and offer advice on how you could learn to love to do the same. I like a clean house and I’m no slacker when it comes to actually doing the deed, but there is no way I want to adopt some ritual that forces me to scrub the toilet every morning in order to feel joyful.

Nevertheless, with the knowledge people could be coming over at the drop of a hat to see the house, I found myself in a state of constant tidiness not too far removed from the feeling you get just a couple of hours before hosting a dinner party. You have ten things to do at once and the pressure is on to get it all done before the first ring of the doorbell. We don’t host dinner parties anymore thanks to my MS. I don’t have the energy to clean, cook, AND be charming anymore. Most days it’s a struggle just to do one of these through to its completion. So, it wasn’t too far into the first week my prayers grew in fervor for God to intervene and make some way for me to survive this part of the process.

We had two open houses and several showings the first couple of weeks which resulted in one low-ball offer that was $40K below asking price and begged to be rejected. However, we received and accepted a second offer this past Monday, but it was contingent on the young couple’s house selling first. It was such a great offer we thought it was worth giving it a chance. For better or worse, a contingency does not stop your house from being shown, though it usually slows things down to a trickle. So, we were absolutely flabbergasted by the number of people who crawled out of the woodwork the day after Zillow and Realtor.com listed our house as “Contingent”. Our hearts and hopes soared that maybe something would come of it all, but my MS was absolutely seething and out to take revenge because I was not complying with its dictatorial demands for rest.

My prayers took on a begging tone asking Him to help me survive and to get another offer that would press the contingency to a precipice and conclusion. With each passing day my appeals intensified to the point they became more like chants than well-spoken prayers.

In addition to keeping things tidy, it grew harder and harder with each passing day to pack up the cats and put them in the car, move the litter boxes to the garage, stash the scratching posts and then drive somewhere to wait until the coast was clear before reversing the process when I got home. By Tuesday of this week I had become so tired I couldn’t walk or be up for more than five minutes at a time. Matter of fact, my energy didn’t even last long enough for the water to boil in the electric kettle for a cup of tea. The situation was dire!

That’s when it happened, right at the intersection of I Can’t Do This Anymore and God, Please Help Me. We got a full price offer on Friday that ended up being the one we got to keep. The young couple who made the contingency offer on Monday was not able to buy our house until theirs sold so they, unfortunately, fell victim to the standard kick-out clause when we got the second offer.

Our realtor, in the business for years, told me that she had never had a house with a contingency offer all of a sudden get so many people wanting to see it. She was still turning down requests to view our house over the weekend well after the ink on our contract was dry Friday.

My emotions have been all over the place through this whole experience. Excitement and anxiousness mixed with a healthy dose of hope, anticipation and nervousness. But when I saw the final full-price offer I thought I was seeing something wrong. I even looked our listing up online to make sure I had remembered our listing price correctly. Sure enough, I had seen it right the first time. That’s when I started sobbing uncontrollably as a flood of relief and gratitude to God completely made me feel undone by Him. Although I had begged God to intervene on our behalf with continuous pleas, I couldn’t take in how mightily He had answered. As the reality of it all slowly dawned on me, my continuous chant turned into millions of Thank You-s and You’re so good to me-s. I couldn’t stop saying it over and over as tears of joy and thanksgiving fell unashamedly down my cheeks. The fact that, once again like so many other times in my life, He had heard my prayers and intervened on my behalf, left me feeling completely and utterly undone and humbled before Him.

I am writing this in the middle of the afternoon while reclining in bed waiting for my MS to wear out its retaliation for doing too much this week. Let my MS do what it may, I don’t care. I am glowing in the ceaseless cascades of my Father’s love for me. I’d spend every hour of every day left in my life stuck here lying in my bed if I had to just to know and to feel His tender, caring, kind, reassuring love. Thankfully, I know I won’t have to do that. It is His nature to be just that good to me!

~ See what great love the Father has lavished on us, that we should be called children of God! And that is what we are! (1 John 3:1)

Life On the Boil

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.