Making Lemonade

Earlier this month, I received a lovely card from my cousin Carolyn. We don’t see each other often, but she frequently sends cards with thoughtful, hand-written messages. This one was perfect.

Someday (after we say, “strange, uncertain, and unprecedented” a hundred more times), hopefully we can look back and see some silver linings and rainbows.

I’ve heard before, “When life gives you lemons, make lemonade.” Lemons are one thing,

Thanks, Carolyn!

but when life gives you crazy cancellations, online classwork, cabin fever, and time away from…well, everything, we need more than lemonade. In our corner of the world, I know that several have lost jobs, businesses cannot remain open, libraries are closed, and schools are not open again until fall. College and high school graduations have been cancelled (or delayed), and many spring events are simply not going to happen.

So where are the “silver linings and rainbows”? As Carolyn suggested, I do think we’ll recognize them more clearly when this becomes a chapter in our history books. Even in the midst of a pandemic that we’re still coming to terms with, there are indeed bright spots! How so? Let’s take a look…

·         I get to see my daughters, juniors in college, more than once a week! Previously, T.R. saw them throughout the week, as they both have jobs on campus near his library office, but now I see them throughout the day. I hear about their classes and projects, and I am also able to share in their feelings of loss. But I do enjoy being able to hear the remote chapel speaker each Monday, Wednesday, and Friday at 10 am, broadcast via Instagram. (I finally installed Instagram. It only took a quarantine to bring me forward a bit more with social media.)

·         Technology truly is amazing. When I was young, I remember the cartoon “The Jetsons,” when George Jetson would press a button, allowing him to see and speak with somebody at a different place… telephones were real, even cordless ones, but a personal phone with a video screen to also? Never. …until more than a decade ago when my personal cell phone could “Facetime.” And now, our daughters and other students around the country can use “Zoom” to glean face-to-face lessons from instructors. And on a personal note, our writing group, “Writers’ Bloc,” can still meet. Our weekly gathering was usually around a table, but here we can see faces and share feedback via this online tool. And an even more important issue is solved at our church. A gathering of a few hundred people isn’t supposed to happen during pandemic season, so UCC has very effectively transitioned to Livestream services during this brief (we hope) season. Church members are sending photos, and chatting or sending emails to our pastor to share their thoughts. (or dropping by small a bag or things for his children’s message)… these have made me smile.  I will look forward to days ahead when he’ll gives one of these lessons from the floor near the pulpit again, as kids give random, unexpected responses to simple questions. (Mark’s straightforward replies to these are golden, and I agree with our associate pastor that he should publish a book of these.) Last week’s sermon was very timely, “Live in the present! God holds the future!”. It tied in well to the post-Easter reflection of the apostles’ responses to life after the resurrection.

·         I hadn’t watched late night TV in years, and though I still don’t, our family has been enjoying Jimmy Fallon’s “The Tonight Show, Home Edition.” Taped by Jimmy’s wife (Nancy) on his cell phone, with a little help from their two young daughters. We’ve also enjoyed other quarantine-specific shows, like John Krasinski’s response to the somewhat depressing daily news. His weekly SGN, “Some Good News,” doesn’t just tell of good things, but he helps make them happen. Last week’s episode involved an online prom, and special guests were a big help, giving students around the country a way to experience a Prom experience while social distancing.

·         It’s spring, so the bulbs we planted one autumn are blooming!  Loving family members have snipped daffodils and tulips for me to enjoy. A couple days ago, T.R. and I were even able to take a stroll outside with Knightrider, our first such walk for almost eight months. (His back is recovering nicely after his October surgery.) I loved being outside, particularly with T.R. and Emily!  (Rach was inside finishing homework… she has a tough semester, not simpler with classwork online.)

·         From our sunroom window, we have a nice view of our little corner of Upland. Two bird feeders, attached to our window via suction cup, allow us to view the interactions of finches, sparrows, cardinals, and even mourning doves

mourning doves – “ground feeders”?

who decide the field guide was incorrect in calling them “ground feeders.” We also see other critters from our window, and as we viewed a squirrel using our fire pit table, T.R. snagged and narrated an adorable video. It became his first episode of “Wild Upland.” He is using this new series of his to learn about posting to YouTube, and to enjoy area wildlife on his daily walks. (Episode one was filmed from our back window, but two was filmed while he was on a walk. Others will come also, one posted each Saturday morning. New quarantine challenge, and he’s had fun with it, as we are both fans of nature shows. (Two episodes are there now, a third will be posted this Saturday!)

So what to all do presently? I think it’s time to make lemonade. You’re welcome to enjoy a virtual glass – there’s plenty to share.

a late poem… for my Knight/Charioteer

My Knight (tacking on even though National Poetry Month has passed)
By Angela Knight
A “knight in shining armor”
is who the stories say
will ride atop a charging steed
to chase my fears away.

But what if his armor loses shine,
is dented on its ride,
if he slips from his mount
as it falls out of stride?

No, my Knight can leave that weight behind,
a light coat will suffice –
a t-shirt, jeans, and dusty boots,
they need not be precise.

My Knight is just the perfect mix
of hero, friend and more-
this “Knight in faded denim”
is forever my amor.

Twenty-five years have come and gone,
we’ve meandered, hiked, and walked –
sometimes sat, sometimes tripped,
then we stopped to talk.

Decided feet could use some help,
Wheels could add support.
How lovely to join in this new way,
It could be our special sport.

So now my Knight can take my hand,
Then push with style and cheer…
You see, my Knight has now become
My Wheelchairioteer.

 

(Dedicated to my dearest Knight in Faded Denim… I love you, T.R.!!)

 

Follow this link to read about T.R.’s special encouragement to other “Wheelchair Charioteers” – I look forward to watching this spread. I’m so proud of him!!

“That week”…

What am I talking about? Well, “MS Awareness Week,” March 10-16 2019, officially marked that week, though it seems repetitive to me. Every day, week, month I face symptoms of what has become my continuing journey. (Even though I managed to post this one day after the week ended, my daily  awareness level hasn’t changed. I just need to manage time more effectively.) This journey started for me in June 1997, and the scenery has changed along the way.

2006 photo of one slice of, Angie’s brain, scars included

For any interested in reading about the said “scenery,” I invite you to a 2017 post, “So what exactly does MS look like?”. When an otherwise functional nervous system is dinged around by a confused autoimmune system, it can wreak a bit of havoc. Not fun, and mostly invisible to the outside observer. My husband also posted about this particular week at his own blog, Freelance Knight. (Thank you, T.R.!)

Newer information has just been released by the National MS Society. I’m less alone than I used to think. Rather than 400,000, it is now estimated that almost a million people (942,000) are currently diagnosed with MS in our country. And one thing I know is true about this is that no two are alike. One excellent example of this is the courageous interview given by actress Selma Blair. I appreciate her willingness to be transparent and public with her struggle!

Though MS has painted paths of life I had not planned, I do know that faith and family continue to be key. Thankful for medical progress and assistance each day, I look forward  to seeing how God plans to use what I do  have, both joys and struggles. Thank you for joining me for a moment on this journey!

Knight Rider – a tale of true love

During our earlier years of marriage, T.R. and I enjoyed going to state parks, museums, or fun little spots that we happened upon. After five years of marriage, these walks involved pushing either a double stroller or two smaller strollers. And time moved on. When the former stroller riders were in kindergarten, my own walking abilities started to falter, and I began using a cane on occasion. Then always. Then after medications became less useful, when those two young ladies were in junior high and high school, I started using a walker in the home and at church, and a wheelchair when we traveled or attended school events. As you can imagine, the walks with my dear husband dwindled away in time.

The wheelchair does allow us to traverse the world together, as long as paths or streets are smooth and free of debris and potholes. Which means that very few area streets worked for walks, and many paths were simply not passable. We searched for a wheelchair that was more all-terrain, but we what seemed like a simple request was anything but. The wheels on a wheelchair are generally not meant for use at uneven or rocky paths, and why would we want such a thing? Well, we were determined to find such a thing.

We had seen “jogging strollers,” allowing a mother (or father) to transport a young one, so I swallowed my pride as I assisted my dear husband in the search for an adult version of this. As we called mobility-related places (wheelchair sales locations), we came up dry. But we live in the age of the Internet, we knew there had to be something. Somewhere. We tried different semantics, and the term that finally worked was “push chair.” The Axiom Endeavor , though pricey, appeared to be what we were looking for. Then came the next step. This was Autumn 2017, and after we communicated with the manufacturer about the specifics of this item, we started our research into cost and insurance. I won’t share all of the details here, but suffice it to say that several medical reports and letters assisted in the final outcome, and by late December the push was in our possession!

Winter in Indiana… not the time for an outdoor stroll. So the unnamed Axiom sat unused and alone until the weather broke, and I believe it was early May that the first outside jaunt took place. A “push chair” is just that – an extremely well-engineered lawn chair of sorts, with supports for over 250 pounds of weight (thankfully not all necessary), with three large, sturdy tires. It could be pushed by my loving husband so we could take a walk of several blocks around our street. And that, my friends, shows how this is, indeed, a “love story.” A grown man bent over backward to research and obtain this item, and now he is pushing his wife in it, with them having conversations with folks along the way. He takes care of it, adds air to the tires when necessary, assists her in getting in and out, and demonstrates both patience and chivalry as they take their walks.

I’m jumping ahead in the story, though. What could we call this contraption? We’re not parts of the Facebook Age for no reason, so we asked for suggestions, of course. After receiving several fun acronyms as ideas (no, Steve and Roger, it was not going to be S.M.O.O.C.H.), we started narrowing it down. Barbie’s “Harriot the Chariot” was in the

“selfie” taken over my shoulder last summer

running, but then we both thought a nod to an 80’s television show would be perfect. “Knight Rider” it is. Friends jokingly suggested we adhere flames to the sides, but that is far from necessary. We’ll each wear a weather-appropriate hat, sunscreen when necessary, and a coat as needed, but we can go on walks together again.

 

And that was the biggest reason the Knight Rider resides now in our home. My “Knight in Faded Denim” still wishes to share walks with his wife, even though many things have changed. He still loves ME, and I certainly love him!

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Valentine bonus: T.R. and I just recorded a podcast about our history of playing games together. Episode 197 – Alls Fair in Love and Gaming – from “Game Store Prophets” of Innroads Ministries. 

My MS Medication Trail…

To understand how yesterday, September 20, was a key step in my MS treatment journey, allow me to take you back in time with me, where we’ll glance through the therapies I’ve experienced. When I was first diagnosed on July 30, 1997, T.R. and I shared with the doctor that we did want to start a family, so I’d like to wait a bit before starting a medication (the first two injectable therapies were just becoming available). I remember, then, an appointment at his Fort Wayne office in October 1998, and before he could share with me the suggestion of beginning a medication, we handed him a positive pregnancy test report. (We’d stopped at a doctor’s office to make certain.) Dr. Stevens shared the encouraging information that MS symptoms usually decrease during pregnancy, sometimes extra bursts of energy will even come! What I found, I’m afraid, is that the extra energy isn’t quite so likely when two little ones are growing… but I digress. Em and Rach were born June 8, 1999, and while I was nursing, MS symptoms  stayed in remission. When my body wasn’t able to keep up with the growing needs of these two little ones, I started using formula also, and this was the norm by Christmas.

So it was that in early January 2000, I started Avonex – interferon beta 1-a. The nice thing is that this medication only needed taken once a week – wonderful! Two negative things: one, it made me feel like I had the flu weekly; and two, I had to give it to myself via intramuscular injection (via a long needle). This is its own story, as my loving husband, who also hates needles, learned to administer this medication. And we gave it on Sunday night – while Monday became a day that my mother often came to help with two little ones while her daughter snapped back from side effects. (They say the side effects stop after a few months –  mine didn’t.)

After about three years, when MRI scans showed disease activity – and I was tired of feeling like I had the flu weekly – we decided to try a different injectable therapy, Copaxone – glatiramer acetate. This one was given with a much shorter needle, and it had a special autoinjector pen I could use, so I didn’t have to watch the needle as it did its job. It was a daily injection, but it had very few side effects. (Copaxone is now available as an injection only given three times a week – nice improvement there!)

After less than a year, though, symptoms and MRI scans were not encouraging, so we moved to injectable medication #3, Rebif – interferon beta 1-a again. Unlike Avonex, this interferon medication wasn’t injected with a 1” needle and didn’t have flu-like side effects. It was also not as effective as we wished.

So late 2004, I was asking Dr. Stevens what he thought we should do… there was something coming that he had read about and was watching. Until it was released, he thought Betaseron – interferon beta 1-b – would give us the best results. (At this time, I was not yet using a cane daily.) The medication he had been waiting for was available January 2005, and I was the first patient in Fort Wayne to take this new medication, natalizumab – only given once a month! But then we hit a snag. On February 28, I called to schedule my March infusion, and I was told there were complications… after a while on hold, they told me the FDA had just announced that this medication was pulled from the market. So back to Betaseron for another year and a half.

During that year and a half, the cane became a necessity. But that was okay. Monthly natalizumab did return to the market, now labeled as Tysabri. There were strict limitations on how it was given, blood tests to watch for really nasty things (that had caused it to be off the market for a year and a half), but I was a proud recipient of Tysabri for almost ten years!

I say “almost” because of a 3-month break. Summer 2013, Dr. Stevens and I wished to try a new treatment option, Tecfidera – dimethyl fumarate. Finally, just two pills a day, not a needle! And he legitimately thought it would be just as effective as Tysabri. But during those three months, I went from using a cane each day to being essentially required to use a walker. And that was the end of my “no more needles” time. So Tysabri re-entered my life, and my final Tysabri infusion was July 2017.

My MS has changed over the years – originally diagnosed as “relapsing-remitting,” Dr. Stevens now classifies it as “relapsing-progressive.” Progressive forms of MS have fewer treatments available, but this spring, a new one entered the field: Ocrevus – ocrelizumab.  News stories showed promising results, and though our goal is for this medication to help prevent further progression, I can’t help hoping for a smidgen of improvement. Yesterday, I had my first half dose, and the second half will come in two weeks. Then, I will receive this infusion once every six months.

What will it do? I don’t know. I can tell you that my only reaction was a bit of an itchiness and redness that was zapped with Benedryl. So it is that September 20, 2017, marked the first page in this chapter of my medical saga – time will tell what the other pages hold.