The Next Step: Ocrevus

The last few years it’s been hard to tell if I’m climbing higher up the rugged mountain of MS or going down deeper into the barren desert of it. Whichever way you look at it, I can’t see the end point.

About three years ago my neurologist and I discussed changing my disease modifying therapy (DMT) drug to one of the new, top-tier, “aggressive”, infusion drugs. These new DMTs carried long-term risks that made both my husband and me very nervous and reticent to hop on the bandwagon. We hoped there might be other options in the pipeline and/or there would be more information about how others managed on them before starting them myself. This decision was not a zero risk scenario, though. By not taking one of these newer DMTs, there was a good chance that my MS would continue to advance and I would accrue more irreversible damage manifesting as additional physical disabilities.

Sure enough, I’ve slowly (thankfully) accumulated more disability while staying the course with one of the medium-tier drugs. I saw my neurologist this past Thursday and she had a very frank conversation with me about rethinking my options. She has earned my trust and loyalty over the years and has gone far above and beyond the call of duty for me on numerous occasions. So, when she told me that I have only continued to worsen, albeit slowly, and it was time to up the game to one of the top-tier drugs, I listened. Within the span of time between our conversation three years ago and last Thursday, over 100,000 people have switched to the newer drugs making the risk to benefit ratio much easier to see. The data looks good that the drugs have helped slow the progression of MS for a majority of people. They are not cures and nothing can repair nerve damage that has already occurred, but these top-tier drugs really do seem to the best thing out there by a pretty big margin.

The next step is to get everything squared away with my insurance–it’s already in process. I will then have to endure an 11 day regime of meds to washout the current drug from my system. That doesn’t sound like much fun!

We settled on a drug called Ocrevus because it seems to have the least scary possible side effects and a tolerable protocol. The first infusion will be half of the regular 600mg dose followed by the other half two weeks later. Thereafter, I’ll get the full dose every six months. To decrease reactions to the medicine, they will infuse steroids and an antihistamine before beginning the chosen drug.

It’s been a lot to wrap my head around. So much has changed within the realm of MS since being diagnosed 29 years ago. But for me personally, one thing has remained the same. I had no idea what the future related to this disease held for me back then, and I have no inkling how far it will go in the future. I suppose that’s fitting in it’s own way because the only thing MS has ever promised to be is unpredictable.

I’ll keep you posted as I go through this next step along the way.

Father’s Love Letter

Get ready to feel loved.

My Child,

You may not know me, but I know everything about you.   Psalm 139:1 

I know when you sit down and when you rise up.   Psalm 139:2

I am familiar with all your ways.   Psalm 139:3

Even the very hairs on your head are numbered.   Matthew 10:29-31

For you were made in my image.   Genesis 1:27

In me you live and move and have your being.   Acts 17:28 

For you are my offspring.    Acts 17:28 

I knew you even before you were conceived.   Jeremiah 1:4-5 

I chose you when I planned creation.  Ephesians 1:11-12 

You were not a mistake, for all your days are written in my book.   Psalm 139:15-16

I determined the exact time of your birth and where you would live.   Acts 17:26 

You are fearfully and wonderfully made.   Psalm 139:14 

I knit you together in your mother’s womb.   Psalm 139:13 

And brought you forth on the day you were born.   Psalm 71:6

I have been misrepresented by those who don’t know me.   John 8:41-44

I am not distant and angry, but am the complete expression of love.  1 John 4:16 

And it is my desire to lavish my love on you.   1 John 3:1 

Simply because you are my child and I am your Father.   1 John 3:1

I offer you more than your earthly father ever could.   Matthew 7:11 

For I am the perfect father.   Matthew 5:48 

Every good gift that you receive comes from my hand.   James 1:17

For I am your provider and I meet all your needs.   Matthew 6:31-33 

My plan for your future has always been filled with hope.   Jeremiah 29:11 

Because I love you with an everlasting love.   Jeremiah 31:3 

My thoughts toward you are countless as the sand on the seashore.  Psalm 139:17-18

And I rejoice over you with singing.   Zephaniah 3:17 

I will never stop doing good to you.   Jeremiah 32:40 

For you are my treasured possession.  Exodus 19:5 

I desire to establish you with all my heart and all my soul.   Jeremiah 32:41 

And I want to show you great and marvelous things.   Jeremiah 33:3 

If you seek me with all your heart, you will find me.   Deuteronomy 4:29 

Delight in me and I will give you the desires of your heart.   Psalm 37:4 

For it is I who gave you those desires.   Philippians 2:13 

I am able to do more for you than you could possibly imagine.   Ephesians 3:20 

For I am your greatest encourager.   2 Thessalonians 2:16-17

I am also the Father who comforts you in all your troubles.   2 Corinthians 1:3-4 

When you are brokenhearted, I am close to you.   Psalm 34:18 

As a shepherd carries a lamb, I have carried you close to my heart.   Isaiah 40:11 

One day I will wipe away every tear from your eyes.   Revelation 21:3-4 

And I’ll take away all the pain you have suffered on this earth.   Revelation 21:3-4 

I am your Father, and I love you even as I love my son, Jesus.    John 17:23 

For in Jesus, my love for you is revealed.    John 17:26

He is the exact representation of my being.   Hebrews 1:3 

He came to demonstrate that I am for you, not against you.    Romans 8:31 

And to tell you that I am not counting your sins.    2 Corinthians 5:18-19

Jesus died so that you and I could be reconciled.    2 Corinthians 5:18-19 

His death was the ultimate expression of my love for you.   1 John 4:10

I gave up everything I loved that I might gain your love.    Romans 8:31-32 

If you receive the gift of my son Jesus, you receive me.    1 John 2:23

And nothing will ever separate you from my love again.   Romans 8:38-39

Come home and I’ll throw the biggest party heaven has ever seen.   Luke 15:7 

I have always been Father, and will always be Father.    Ephesians 3:14-15 

My question is…Will you be my child?     John 1:12-13 

I am waiting for you.    Luke 15:11-32

Love, Your Dad.

Almighty God

*Permission to copy and reprint providing that it is used in its entirety and the following copyright notice is displayed…Father’s Love Letter used by permission Father Heart Communications ©1999 FathersLoveLetter.com

(Sometime earlier this week I got the idea to write a letter imagining it was from God to us, His children, using a compilation of verses. I got a little way into the project before thinking I should Google it to see if anyone else had embarked on the same endeavor. Sure enough, someone had done so and did such a masterful job there was no need to recreate the effort on my own. Thankfully, the anonymous person has allowed the letter to be reprinted, provided the copyright be sourced. I hope you have been as touched by these words as I have. To the glory of God!)

When Music Sounds, Gone Is the Earth I know

Without a job the days tend to blend together.  I no longer feel a tinge of sadness that another Monday has rolled around or the excitement of the work-a-day world that it’s finally Friday again.  But, for some strange reason, I definitely struggled through Monday this week.  Was it because hubby had to go back to work after a lovely four day weekend together?  I feel so much more freedom when he is home because it is the only time I really get out of the house these days.  I don’t know, but I definitely had acute symptoms of Monday-itis.  

Oh, before I forget, I should take a step back for a second.  Remember that post a couple of weeks ago about me riding my bicycle and all that bravado of determination to stick it to MS and just ride anyway?  Yep, that one. Well…that sent my MS rolling on the floor in screams of laughter and hilarity. It could hardly catch it’s breath long enough to snidely retort, “That’s a good one, Amy!” 🤣 😂

I have gotten on my bike four or five times since but I’ve come to the conclusion that a seven minute ride just isn’t worth five hours of drooling on the couch in utter debility.

So now, back to the story of Monday.  I got up early to ride my bike and, to be fair, got along better than usual.  I rode for 17 minutes and only had to rest for 45 minutes before being able to take a shower and brush my teeth.  The fatigue settled in heavily thereafter, though, and was thick and heavy for the rest of the day. I was bored and my mind was clear enough that I wanted to be doing something.  On three separate occasions, I tried to come up with something to write about. Nothing but a blank screen stared back at me. Honestly, after the first minute or two of nothingness, the screen wasn’t strictly blank, it looked a lot more like Spider Solitaire.  I decided I was wasting too many brain cells doing such a mindless activity and was determined to do something productive. I emptied the dishwasher and swapped wasting brain cells for wasting energy I did not have. I then decided to work a little on a sewing project I had begun a few weeks ago.  Who knew sewing took so much energy?? URG! 

I tried reading.  I love to read and take great delight in doing so nearly every day.  Why didn’t I feel like reading? Hey, Monday, cut me some slack! I tried watching TV but I couldn’t find anything that interested me.  I finished a puzzle I had started the day before but it only took about 15 minutes. I tried to watch the birds but apparently they all colluded with Monday and went to someone else’s feeders.

Having exhausted all the usual pursuits that keep me busy when I find myself forced to sit all day, a sudden stroke of genius popped into my mind.  Music! I will listen to some music!! 

I have a fairly eclectic taste in music.  My music library is a hodge-podge of various decades of rock, punk, swing, big band, blues, jazz, folk, bluegrass, Christian…pretty much anything that isn’t country or rap.  I’ve been listening a lot to rock, blues, and Christian the last few months but these did not fit the bill on Monday.  

If I was ever sick during the school week while growing up, my parents would drop me off at my Grandma Lois’ house and she would take care of me until they were done with work.  Grandma always had her radio tuned to KTXR 101.3, which was known back then as “The Gentle Giant”. They played a kooky mix of soft rock and various kinds of instrumental music. We never listened to KTXR at our house or in the car but I loved listening to it at Grandma’s house.  Like all kids who grew up in the 70s and early 80s, I watched my fair share of The Lawrence Welk Show. Although I wasn’t ever really interested in listening to any of the lounge act singers, I was a huge fan of the orchestra, especially when they played by themselves. Somehow these two weirdly-paired entities of my childhood faintly illuminated the beginnings of a serious passion for a genre of music I wouldn’t have much exposure to until college.  During 1989, while attending university, I discovered the local National Public Radio station in town. They played classical music several hours during the day back then and I suddenly felt like I had discovered the songs of angels. No other genre of music has ever come close to the joy and delight I have found through classical music.  

I guess like all things in life, you go through phases of binging on one thing to the exclusion of all others until something brings you back to the center of some old passion and you relive the fundamental elements that drew you to it in the beginning.  

And so around 1:15 in the afternoon all the “-itis” of my Monday disappeared.  My heart soared upward, untethered from my languid body, until I no longer knew if I was part of this world or had joined the mirthful realm of the next.  I cried listening to Chopin’s Raindrop Prelude and Etude Op. 25 – No. 1 because of their limpid, beautiful timbres. Brahms’ waltzes, especially my favorite, No 15 in A Major, Op. 39, felt like liquid love washing away all the dullness of the day. Beethoven, Mozart, Bach, Massenet, Debussy, Vivaldi, Schumann, Elgar, Ravel…one after the other until I was too blissed out to care that I was under the thumb of MS that day.

Music, when applied to just the right heart at just the right time, is the strongest balm one can apply to weary souls. 

Music
When music sounds, gone is the earth I know,
And all of her lovely things even lovelier grow;
Her flowers in vision flame, her forest trees
Life burdened branches, stilled with ecstasies.

When music sounds, out of the water rise
Naiads whose beauty dims my waking eyes,
Rapt in strange dreams burns each enchanted face
With solemn echoing stirs their dwelling-place.

When music sounds, all that I was I am
Ere to this haunt of brooding dust I came;
And from Time's woods break into distant song
The swift-winged hours, as I hasten along.
~ Waltar De La Mare

The Game is Afoot!

Two Saturdays ago I rode my bike out of our neighborhood and into one a few blocks away. As I was leaving that neighborhood, the all too familiar onset of instantaneous fatigue hit. I had ridden for 17 minutes but was still a good ten minutes away from home and had no choice but to keep pushing until I made it back. I have been paying for it ever since.

Oh, how I’ve battled fatigue these last many days! Nevertheless, I decided last night I’d test the waters by taking a short ride this morning. I got up early to avoid the heat and, for the first time in 2 weeks, rode up and down our street for almost seven minutes. The hardest part was when I was done. Walking back to the door from the far side of the garage where I parked my bike then up two steps into the house felt like I was conquering Everest. I had to sit and rest before taking a shower and getting dressed. I had to sit again, this time for two hours, before I mustered enough energy to brush my teeth. I’m beat! The fatigue is absolutely oppressive and utterly obstinate. I will rest and sit for the rest of the day, but I am determined to get up and ride again tomorrow. I don’t care if it’s just for a few minutes. I have to have some say in how I live with this and spend my limited energy. The old saying, “I might have MS, but it doesn’t have me” isn’t always true physically but it has to be mentally. Living with any disability eventually becomes a mind game. The ball has been thrown not only into my court, but straight at my head! I have to catch it, manage to throw it back, and get ready for the next shot that will inevitably come whizzing back in short order. The game is afoot!