Breath In, Breath Out

Sometimes I’m really proud of myself for being able to keep the rhythm of breathing going, such is the joy of MS fatigue.

In my last post I said I would try to write something about my MS, so here it is. Whew, this summer has been a challenge! I have had a smattering of a few good days here and there and even a few strung together in sequence, but more often than not I’ve been under the thumb of pervasive, domineering MS lethargy. Nope, it’s not the kind of tired that needs a nap and sitting to rest for a spell doesn’t shift it at all. Like having a bone dry fuel tank, no matter how hard you try to go, you end up getting absolutely nowhere. The engine won’t start, the wheels won’t go anywhere, the brakes won’t compress, the electric windows won’t budge… technically it’s a car, but it’s good for nothing. I still look like Amy on the outside but there’s no juice to animate me. The electrical wires of my nerves are stripped and the signals my brain tries to send to make my body move either can’t or only partially get through. As a result, I don’t walk right, my hands don’t work the way they’re supposed to, my bladder doesn’t know if it’s holding or letting go, my thoughts struggle to be strung into words, and my balance is all over the place making me stagger around like I’m drunk. Normal things like showering, getting dressed, eating, and even sitting up use inordinate amounts of energy because my nervous system is having to work 1,000 times harder than yours just to get the signals through. Some days, for some inexplicable reason, I spontaneously recharge fairly quickly and I get to do things other than basic human functions – these are my good days. Other days, most days if I’m honest, time passes from my favorite chair or lying in bed. I read, listen to audiobooks, put puzzles together on an app, watch TV, and snuggle with our cats.

MS and heat don’t mix, it makes all symptoms worsen, so I haven’t been on the patio taking pictures much the past few weeks. However, the past couple of days have been milder allowing me to snap a few pics of my feathered friends.

I’ve learned to love bluejays and all the sounds they make.
Matchy, matchy red!
I’ve said it before and I’ll say it again, cardinals are one of the most beautiful birds of all!
Male downy woodpecker
Female house finch
Sweet lil’chickadee
Mourning doves are another personal fav.
The butterfly bushes we planted in the spring have more than doubled in size and smell wonderful!
There have been 5-10 hummingbird moths around the butterfly bushes all summer.
Oh, and the skippers love them too.
Hubby has just a couple more days before he heads back to work. This chore has been on his list and he’s glad to have it done. It’s still hard to believe God has blessed me with such a perfect guy ❣️

May God be with you! ❤️, Amy

Quiet Days

Quiet Days

It’s been a month of MS fatigue and quiet living. I’ve ridden my scooter a few times to the lake in our neighborhood and enjoyed the dragonflies and flowers always present. Here are a few of my favorites.

One of these days I’ll write more. God be with you! ❤️, Amy

A Bumpy Ride on the MS Bus

Hello, friends, it’s been a while.  I’ve tried to write a few times but my thoughts have been all over the place.  It’s hard to write intelligibly when you’re being jostled every which way riding at the back of the MS Bus over rough terrain.  I’ve had some smooth spots here and there but there have been plenty of pothole infested gravel roads that have caused the wheels to come completely off.

I think the worst day was when I had wandered out onto the patio to watch the birds and got stranded for close to three hours.  I was home alone and knew I was tired but misjudged the severity of it and entered a sort of locked-in state unable to move and get back into the house.  There were birds a plenty at the feeders that day to keep me company, as well as butterflies and bees visiting the then blooming lilac bushes.  However, as I rounded into the second hour, my bladder started to send a signal that became a blur of non-stop, unbearable …—…  It was a true cliffhanger!  Would my legs recover enough to get me inside before I lost control of my bladder?!?  I’m happy to report that thirty minutes later, at the end of my bladder’s tether, my legs kicked in and saved the day!

Per usual, I’ve been snapping a few pics of the birds around the house.  I was finally  able to put the feeders up again about two weeks ago with no signs of sick birdies.  I sure missed my little feathered friends!  A pair of house finches made their nest on the wreath on the front door.  Their brood of six have all made it so far, as you can see below.  Mom and Dad have been keeping the nest floor clean by putting the little nippers’ poo on the edges of the nest.  That will be fun to clean up 😝.

Here are a few of my favorites from the backyard.

Thanks to many of you, I am thrilled to report that I came in first among the local MS Walk fundraisers! From the bottom of my heart, I am truly grateful.

The ride is getting bumbier all of a sudden and I am going fuzzy again. I hope you are doing well and enjoying the beauties God has made all around 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

Nature Nurturing

We’ve seen the perfect blend of summery sun and rain here in Southwest Missouri this past week.  We’re usually roasting in nearly 100*F/38*C by this time in August, but we’ve had gorgeous 77-80*F/21-27*C days.   Thanks to the recent weather, nature is lush and bursting with color all over the place around us!  The forecast says it will only last another day or two, but it has been a delicious treat while it lasts and a balm for these many months during Covid-19.

A large forested area lies both north and south of our neighborhood with a good sized river about a mile down the road. It has both a well-maintained river access spot and, a little further down the road, an old, reallocated bridge that serves as the entrance for a greenways trail that winds through and circles our city. Additionally, our neighborhood has a little landscaped lake with a walking path, bridge, water feature, bird houses, and a bench along the shore. On Wednesday of this last week MS kindly lent me a decent enough day that I drove to the river in the morning and spent some time soaking in the views from the bridge at the trail’s head. After lunch, I headed off for a lovely, cane-assisted stroll around the lake.  There were butterflies everywhere in both places! They somehow managed to lift my spirits on their tiny little wings and carry them about as they soared around and flitted and fluttered here and there. Similarly, as I rested a couple of times on my way around the lake in the afternoon, I found myself smiling as I tried to follow the dizzying courses of dozens of dragonflies going nowhere and everywhere at once. What funny little creatures! Oh, and don’t worry, there are plenty of bird and cat photos below too😻!

This past Friday was an exciting day when…my new camera arrived!!! As you peruse the photos below, see if you can guess which ones I took with my point-and-shoot and which ones were with my new DSLR. The new camera inspired me to branch out and find a new photo editing app to play around with. It’s pretty safe to say I have a lot to learn. As an example, I hadn’t been messing around with the camera for more than five minutes before I realized I needed to invest in a more versatile lens. Some lessons are pricey 😉! No worries though, I am having fun and can’t wait to learn and grow my skills (and lens collection!). It was time for the upgrade because I needed another sit-down hobby to add to my arsenal of things to do when the MS monster has me lashed to the couch. 

Speaking of MS, my next Ocrevus infusion is at the end of this month. Let’s see, this will be my second full dose which means I’ve been on it for 18 months. For the first time since starting it I think I’m experiencing the “crap gap” I’ve heard other MSers describe just before their next dose. My already ridiculous fatigue intermixed with poor balance, endurance, gait, bladder issues, clumsiness, sluggish word finding, and occasional cog-fog have all ratcheted up to the next level over the last few days. I hope topping the tank with more O-juice knocks my symptoms back down to the previous notch.

Part I: Riparian and Lakeside Entertainment

I’m guessing it’s a northern crescent.
Common buckeye
Fiery skipper butterfly
Northern pearly-eyes
Brown-eyed Susans
Dewberries??
Blue dasher
House Finch before the rain.
House finch during the rain.
House finch after the rain.
Mourning Dove trying to stay dry.
Same dove after the rain.
Female house finch with Niger all over her beak; steady rain.
I NEVER pass up the opportunity to snap pics of this skittish Red-bellied woodpecker. BONUS: Carolina chickadee 🙂
“Who said that?”
Suet on the tip of this chickadee’s beak.
Our resident nuthatch. This little thing fascinates me.
Carolina wren and female finch
My Laudy girl 😻
My Pipper boy 😻
He is Bee-A-U-tee-ful!
Her eyes! Her little whiskers!! Her white undercarriage (as hubby likes to call it)!!!
Her fur feels like crushed velvet and she insists on being held nearly all the time. What’s not to love?!
Not to be outdone, Pip is our resident lap and shoulder snuggler. He has the sweetest disposition and is an absolute riot to play fetch with. He has gorgeous golden eyes and perfectly preposterous ears!!
CRX waves to make anyone jealous.
There’s a reason hubby calls Pip “a tender little guy.” He gives the best snuggles and makes me smile.

Here we are at the end of another blog. I looked back and realized I have been posting weekly lately. I didn’t mean to, or not mean to, it just happened. Will there be another blog next week? Maybe, I guess we will both have to wait and see😁. Either way, I’m glad you stopped by for a look-see. May God be with you! Amy

Hercules Wants My Toothbrush

Hercules Wants My Toothbrush

I didn’t know MS recruited, but it seems that it recently acquired the mythical legend Hercules to it’s dark side.  I guess he took a shine to my electric toothbrush because it certainly feels like I am in an all-out, do or die wrestling match against some kind of superhuman force the entire two minutes it runs.  Oral hygiene shouldn’t require a 10 minute power nap to recover from, right?  It’s been so long since I’ve experienced “normal” energy that I can’t remember. 

Anywho… despite insipid fatigue, life has crept quite happily along.  Because I have the best hubby and sister in the world, they each drove ten hours both ways (!) so I could spend a week staying with my sister in Texas. We didn’t do anything or go anywhere because CV-19 is crazy in Austin at the moment, but we had fun anyway and I love spending time with them all.

I helped my nephew study for his permit.
I sewed a toy for their new puppy, K.C. Yep, they are die hard Chiefs fans 🏈
My bro-in-law shared his addiction to these cookies with me 😋.
Peanut butter and jelly
S’mores
Not to be outdone, my sister opened my eyes to this tasty delight 😋.

(L-R) chocolate, raspberry-white chocolate cheesecake, red velvet, lemon.

Other than having to start a diet when I got home, everything else fell back into place like I had never left. I still have the sweetest hubby and cats one could ask for and the birds are as photogenic as ever. Oh, and a squirrel has found the feeders. He’s cute now but he probably won’t be if he decides to invite his friends.

Purple Finch
Nuthatch
Look how long the nuthatch’s beak is! They are easy to identify because they do everything upside down.
Goldfinch
Young female Finch
Cardinal
Eastern Bluebird
He is a cute little booger!
Laudy
Pip

A few days have been nice enough I have been able to spend time outside, but heat and MS don’t mix so I’ve been indoors a lot more than I would like. I’ve had extra entrenched primary MS fatigue which has made it hard to do much. (Primary fatigue is thought to be due to nerve messages from your brain and spinal cord having to navigate the areas of damage caused by your MS. It takes more energy to send and deliver messages to other parts of the body, like the muscles in your arms and legs, causing a build-up of fatigue. – mstrust.org.uk). However, it feels good to be back home and I have books that need reading, shows that need watching, puzzles that need putting together, music that needs listening to, and apps that need playing.

Stay safe and God be with you!

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.

Mid-May in Survival Mode

My Multiple Sclerosis has been a beast more days than not since my last post. I hate it and it hates me. I guess we’re even. Even so, life in these extraordinarily strange times has continued to flow on. Hubby is wrapping up grading finals this weekend and we’re both looking forward to him having a few weeks off before his summer schedule kicks off. He will be teaching from home again which makes me happy. It’s been so good to have human interaction during the day, even if it is just for short breaks between his classes.

Last week we joined what felt like half of our city in the parking lot of one of our area’s hospitals to see a B-2 Stealth Bomber fly over as a salute to the selflessness of our medical workers. I don’t know which I was more impressed with, the rare sight of two B-2s or the sense of unity and pride I felt seeing so many Americans come out to wave flags, clap, holler, and whistle as they flew over. To tell the truth, I’ve not felt much patriotism the last few years. Don’t get me wrong, I love my country and am grateful to be an American but the political tone and constant gamesmanship vomiting itself all over the media has not fanned the flames of my patriotic fervor. It felt good to see my fellow citizens come out in support of something that binds us together rather than tears us apart.

Hubby and I went to Target before the B-2s were scheduled to make their appearance. The line to check out snaked almost to the back of the store. It felt more like I was in line at an amusement park waiting to get to ride a new roller-coaster than the chance to buy toilet paper and Fruit Loops.

On the way home after the B-2s, this jacked up truck came roaring around us. I wonder what this guy is trying to compensate for with his huge muffler 🤔.

Speaking of compensations, one of the few (but best) I have from being immobilized on bad MS days is spending long hours with a snuggly cat tucked in my robe while sipping coffee.

I think being able to sit and watch nature from the comfort of my rocking chair on the back patio has not only kept me sane during endless days of forced rest, but has also given me something to look forward to. Here are a few snaps from my latest gallery of feathered friends…

Goldfinches!
The early Robin gets the worm.
A Cardinal perched in one of our river birches.
Black-capped Chickadee
Lovey dovey
Chipping Sparrow
Munch, munch, munch goes the Purple Finch!
It has been thrilling to see this little Indigo Bunting come to the feeders!
This Red-bellied Woodpecker is very skittish, much more so than the other birds that come to the feeders. It has been a challenge to get a good shot of him but I think this one does him justice. He is BEAUTIFUL!
We’ve had up to four Downy Woodpeckers at a time at the feeders and suet cakes. The distinguishing red mark on this one’s head looks like a heart to me.
This lilac tree filled the entire backyard with it’s delicious fragrance and proved irresistible to butterflies.
Red Admiral Butterfly on Lilac

I hope you and yours are both healthy and safe. God be with you!

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 ❤!