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

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.

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.