My MS Medication Trail…

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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.

20 Years…

Rich ticket stub

Twenty years is a long time – but sometimes, it seems like no time at all. Time is funny that way.

1997 was particularly significant for me in a number of ways. In late May, I cleaned out my middle school classroom for the last time, saying goodbye to a career that would take unexpected turns. We moved to a new town, and my husband was now much closer to his new job at Taylor University (as he had been commuting until I completed my school year… I had signed a contract, you know). In May, I also visited my eye doctor… who led me to another doctor and a diagnosis in June for probable multiple sclerosis. (Because we weren’t busy enough the first week in June, as we packed boxes to move four days later… but that’s another story.) The official diagnosis came on July 30 – yep, it was MS.

This part of the my own 1997 story took a step in August when I attended a concert of my favorite musician, Rich Mullins – the link here will lead you to a review of the concert I posted the next day. What I did not realize was that this, the final concert of his tour, would be the last of Rich’s performances I’d have the pleasure of seeing. Of the fifteen concerts of his I had attended, this was also the first one that led to tears. During “Bound to Come Some Trouble,” the floodgates let loose. Two weeks earlier, that diagnosis had come, and I really wasn’t certain what it would mean. (Attached is a clip of this song that somebody recorded at his Wisconsin concert on August 10, four days before I had my little tissue-soaking time.)

September 19 was a day like any other – I was a graduate student, commuting to Ball State for class and work during the day, and the phone call came from my younger brother that evening. I had been listening to Rich’s “Canticle of the Plains” as I could throughout the day, but now I stepped into our back yard, where I could lean against the towering oak and gaze at the stars. The lyrics of “Elijah” scurried through my head, as I teared up and wondered about that candlelight in Central Park, and what it would mean to say “Goodbye.”

So here we are twenty years later, and I still feel that my life as it is today has been enriched by the music and ministry of Richard Wayne Mullins. His songs still traipse through my head, and I’ll still be reading scripture and thinking, “So THAT’s the spot where that lyric originated!” But a huge smile came to my face last Sunday morning when our associate pastor was describing what his two-year-old son had been doing at breakfast. Music was playing, and the little fellow left his cereal at the table and felt he needed to dance before our Lord… we were told this was a Rich Mullins album that was playing. I have a feeling this would have made Rich smile. And I have no doubt that Rich’s music will continue touching countless more lives in years to come.

This year, my own story will instead mark September 20 as a significant point. As I begin new medical path for my MS treatment, a new chapter may begin in my own story. I’ll plan to listen to Rich’s music as I venture on – and I’ll post more about that tomorrow or Thursday. In the meantime, I’m thankful for the legacy of Rich Mullins on this day in particular.

Gen Con 50 – View from the Chair (days 3 and 4)

 

Yes, Day 3 of Gen Con came, and though the numbers were technically not larger, it seemed more packed, I think. Yesterday ended later for us, but for a fun reason, as T.R. attended an awards ceremony for the ENnies, the EN World RPG Awards. His “Cyclopaedia” blog was one of five blog nominees for an award, and though it was not a winner, two different games he assisted with did win gold and/or silver awards!

But what were those other snapshots of on Friday? The one plain shot of an elevator wasimg_1390 a reminder of how thankful we are for the elevators and skywalks that allow us to attend events in and around the Convention Center without trying to navigate stairs or crazy twisting ramps. …We hit our first snag here, though, when Thursday evening’s elevator from the skywalk to the Convention Center was dead. And there was nobody to contact, no number to call. We ended up making our way across to a parking garage where we could take an elevator down, then walk along the city street to enter the Convention Center, once we found an entrance on that side that didn’t involve a stairway. Thankfully, it had been repaired by the time we were on the way back from our evening event.

Other events Friday included demo-ing (then purchasing) two new games. One img_1397that excited me to most was Codenames Duet, a cooperative two person version of the popular party game. Yes, it’s a neat game, but what excited me the most wasn’t just the game itself, but the fact that the convention demonstration size of the lettering on the cards was huge… so I could read it from a few feet away without problem! Though the demo sized tiles are not sold, I’m contacting the company to encourage them to make this version available! Small text size on playing cards is one of the more frustrating bits of gameplay I face, and what a beautiful solution this option could be. We shared these thoughts with those running this game room, and I will communicate with the publisher after we’re home.

One little piece of Gen Con I enjoy each year is the balloon sculpture.

 

This year’s Golden Dragon, representing the 50th Anniversary, is quite lovely. More was pieced together each day, and we could view the final celebratory piece on Sunday! (I didn’t attend the final popping.)img_1442

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Bob Ross “The Art of Chill” board game

Saturday evening had also been an extra special game time, with friends gathering in our hotel lobby/breakfast area to share pizza and snacks, then img_1417play new games we had purchased – my favorite was one that is now available at Target stores. If you also grew up watching “The Joy of Painting on PBS, you also may enjoy the game where you earn points for painting fluffy clouds, happy trees, and mighty mountains.  Some of those who gathered were those who rarely meet face-to-face, but know one another via online communications through Innroads Ministries.

Sunday brought one of our favorite parts of the week, the img_1433Christian worship service. This gathering of believers to sing praise, share communion,  and hear a telling message from Tom Vasel. Though the speaker is known in the gaming community as the founder and host of the game review podcast “The Dice Tower,” he is also an ordained minister. His message was right on target with this audience. The three points (as most sermons possess) were simple:

1. Be content. (even when you’re attending an event that shows you so many games and things you “must have.”
2. Listen. In our busy world – and a busy Con also – take time to stop and listen. And Hear. Sometimes, we need reminders to stop talking, to take in messages from others.
3. Rest. This goes hand-in-hand with the previous note to rest… and no, resting does not indicate laziness, but it is necessary physically, emotionally, and spiritually.

We certainly appreciated Tom Vasel’s timely words, and after we left to join the final day img_1445at Gen Con, we prepared to meet with various people, then we had a unique, unexpected lunch that showed another way a business took an “invisible issue” img_1810seriously. At a daughter’s request, we decided to visit “The Walking Waffle Company” in the food court of Circle Center Mall. Their menu offered different meal options – the breakfast waffle with bacon, eggs, and cheese looked lovely, and the chicken waffle sounded fun. I have an unusual, rather annoying allergy: black pepper. As I do at any restaurant, I asked the gentleman taking orders if the chicken or breakfast waffles contained any black pepper. He thoughtfully responded, “The eggs don’t, but several items do, and I’m afraid pepper could  remain on the grill and leach into the eggs.” He then carefully considered and found that the Waffle Club Sandwich should work for me. Not only was he correct there, but I found a new, unexpected treat. I know that food allergies can be tricky, particularly when they’re uncommon. I do appreciate a private restaurant owner, even in a popular food court, taking the time to accommodate a silly allergy.

As we walked toward our room after lunch, a game-editing friend passed us in the hallway. John had injured his foot and was in a wheelchair (where he had not been when I talked with him on Saturday morning). “The world is different from this view – it’s quite… disconcerting.” John then described an interaction he’d had with a taller friend – about 6′ 5″ – and he said they were so far apart that he felt cut off from the rest of the world. Trying to converse with a taller friend woke him up to a different perspective.

Gen Con 50 did hold more than the snippets I described. So many neat conversations with people from around the world, here just a ninety minute drive from our home. Games and costumes and celebrations and more. But me? My “battery” is such that I took a nap each afternoon, while the rest of the family worked at a booth each afternoon. I enjoyed and appreciated the experiences I had – Nice job, Gen Con 2017!

 

 

 

 

 

 

 

 

 

 

 

Gen Con 50 – View from the Chair (day 2)

Today has been a lovely but full day – because of the late hour, I decided to share photos only, with the story to fill in tomorrow. So stay tuned for the explanations…

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Celebrating 18 years!

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Funny how “National Poetry Month” didn’t result in more blog posts in April… April and May were beautiful, challenging, and exhausting. Why so? Our lovely twin daughters were completing their senior year in high school, which meant senior prom, final theater productions, band contest, AP tests, and final programs of many kinds. Of course, in the midst of this, MS has popped in from time to time… since late April, I’ve had great fun with “mandibular neuralgia,” where a nerve on my bottom left jaw (mandible) has decided to act up. But I can deal with this, just glad I don’t have current speaking engagements ;).

Graduation was last week, and by the time we returned home after our lovely open house celebration on Saturday, my “battery” level was quite low… it’s taken me a few days to “recharge,” but I feel like I’ve done that. Good thing, as today marks a huge celebration. Which celebration is that? Emily and Rachel’s eighteenth birthday!

In honor of this day, and as a final poetic post, I’ll share the story of their birth from the perspective of their mother. (This won second place in an area poetry competition, with the theme, “The Great Outdoors.”)


The Magic Door
by Angie Knight ( a true story – April-June 1999)

The time was close – six weeks to go,
spring was on its way.
Mommy waited patiently and
treasured every day.

Her favorite season brought new life
to tired, faded trees,
while she and Daddy took a walk
to feel the April breeze.

Soon they would come, two little ones
who waited now to see
the lovely world that would be home
for Babies A and B.

But then the doctor put the brakes
on time for work and play,
“Lay and rest, this will be best,
and soon will come their day.”

Six long weeks, they plodded by,
with Mommy longing for
a moment to just take a step
out through the wooden door.

She’d missed the daffodils, the scents
when spring was in the air,
the Great Outdoors were calling,
but she couldn’t visit there.

The day, it came, the babies joined
the world, first A then B.
They stretched and cried and lay in beds
for everyone to see.

Two days later, home they came
and all could hear them cry.
Eating helped and swings were nice,
but everything they’d try

to calm the smaller baby failed –
not song, not bounce or whirl.
The tired mom was wondering,
so holding Baby Girl,

she opened up that wooden door
and let the infant see
the outside world –
then something seemed to happen magic-ly.

Her eyes were new, but what she saw
brought silence to the place.
The spell she felt, the Great Outdoors,
the fresh, green quiet space.

In days to come, the parents found
the “magic door” still reigned:
quiet overtook the child
and peacefulness remained

each time they took a step outside
to venture out and see
“The Great Outdoors,” a view of life
that helped her to feel free.


Eighteen years later, not only do these young ladies sleep through the night, but they are amazing, intelligent, talented women who will be starting college in August. Ironically, the infant who loved stepping outside is now happiest when reading, making music, or interacting with technology inside. RachelRachel will be pursuing a degree in social studies education, with plans to eventually become a school librarian. I love watching her pursue story, literature, and truth – all with that special spark that is “Rachel.”

Emily, however, loves to spend time outside and DSC_0529frequently helps with the garden. She will will be working toward a degree in chemistry education. Having won the top award for science and for math in her high school class (yes, ahead of the fellows), Em is on her way to becoming the most engaging, artistic, and inspiring chemistry teacher we’ve ever seen. Her art blog may be viewed at www.emilyknight.org, and it will be wonderful to see where this talented twin’s life heads.

What a wonderful blessing and adventure these eighteen years have been – Happy Birthday, ladies!

dancing twins

I’m aware – what should I do?

Disability-Awareness-Month

As I face life with disability, T.R. and I frequently hear a passing comment, “Let me know if I can help.” Folks mean well, but it can be hard to pinpoint “help” that can be done. Like many of you, we like to live our lives, feel that everybody else has plenty on their plates also, so it seems lazy to ask for assistance with everyday things. And specific ways to help just don’t cross our minds.

We realize that friends really do wish to help, so as this month reaches its end, I thought I’d share a few examples of ways one can reach out to those facing physical issues (and their families!).

Groceries – Sometimes, we don’t even realize what little parts of our lives we take for granted.  For me, grocery shopping was one of them.  It didn’t seem big until it grew a little more difficult to maneuver all of the grocery aisles, fill the cart, wait in line… and have any energy left. Then my friend Christa, about fifteen years ago, said, “Hey Angie, I go each Tuesday to get groceries at Wal-Mart – if you want to get a list to me before then, I’d be happy to pick up yours, too.” She brought the receipts and groceries, and I paid her the appropriate amount, of course, but it was astounding to me how much of a help this was! Christa and I continued this for about two years, and I now have a similar deal with nearby family. I love viewing the grocery ads online and creating a list of what I know our family would enjoy – and sales are a bonus! When people asked how they could “help” our family, this had simply not occurred to me. If not with groceries and such, a simple “I’ll be in — at —, is there anything you’d like me to pick up for you?” can be a help.

Garden help – If a person has problems that involve energy, movement, or heat, helping with planting and/or pulling weeds can do a lot to not just physically assist, but to lift a person’s spirits. And if pulling weeds or helping children do so, make sure you can all determine what NOT to pull. Planting times have arrived this year for early seeds, and it takes dexterity and strength to correctly prepare and plant a garden bed. (Huge kudos to my dear husband for doing amazing prep work and then planting this past week!)

Food – This is especially true if the main “cook” in the family is one who is now facing physical troubles. When friends knew my MS was acting up more nastily than usual, a friend sent us a message that she was going to make a pan of lasagna for us – she just wanted to be certain of food allergies and such first. Then we’ve had notes with gift certificates for area restaurants with take-out and delivery… so kind! None of these are things we’d ask for, but I assure you they were all appreciated. [Angie note: if you wish to help with food-related things, make sure to find out about allergies. Even something as simple as black pepper can set off an allergic reaction… says the lady with the irritating black pepper allergy.)

Your presence – Sometimes, just having a friend drop by to say hello and chat can be welcome! Call (or email or text) first to be certain the time works – but a visit from a friend can help a person who spends a lot of time alone feel less isolated. And more loved.

This month has been one for developing awareness of those with disability issues, and I hope it can help us each give thought into ways we can reach out to and encourage our friends and neighbors.

 

 

“The Present” – more than a disability story

Sometimes, a short story or film will come my way, and it just won’t leave my head until I revisit it. And go again… and at least one more time. Here is one such piece of work, an animated piece just over four minutes in length. Though I first viewed “The Present” less than a week ago, I found out that it was released last year, by an animator in Germany, based on a comic strip from Brazil. The story has been translated into several languages, though it can be understood without words. It has since won awards at the presentfifty film festivals around the world. At one such festival in Brazil last November, the comic artist and animator met face-to-face for the first time. (Little side stories like this make the subject even more meaningful to me, proving that subjects like this cross generational, geographical, and cultural lines.)

Please watch this short film – it shares truths about dealing with disability more eloquently than yours truly ever will. I think I need to watch it again now, which means I need to grab a tissue. You may want one also – enjoy!

 

Disability Awareness Month 2017 – not your inspiration

Disability Awareness Month 2017 has an interesting, unusual, and meaningful theme: “Not Your Inspiration.” When I first received a flyer about the theme in late January, I was surprised. I was also a bit apprehensive, as over the past few months, I have had a number of people share very kindly that I am an inspiration to them, as they watch how I face various struggles. I’m never quite certain how to appropriately respond to these comments, though I generally smile a “thank you.” And I don’t wish to overtly defy well-wishers. But let’s take a look at the message here:

So if not “your inspiration,” what would I wish to be? As I asked myself this question, I came to the conclusion that these posters don’t tell the whole story. Thinking of neighbors, coworkers and classmates who face challenges, I do see some whose stories and examples are inspiring. Many face difficulties not so visible to others, with no cane or chair or facial expression that paint the picture of disability. Like me, I think others wish to be seen beyond the outward bit, as the “not your inspiration” campaign insinuates. For those who know me, I’ll add a fourth poster:

I’M NOT YOUR INSPIRATION:
I’m your friend.

Admiring those who overcome disability is fine, but this month us a good time to focus on the people beyond the challenges they face.

Day 30 – Thirty Days of Thanks – Year five finale

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Five years ago, I decided that my “Invisible Issues” blog would focus on something besides disability difficulties. Why? Mom battled a breast cancer diagnosis, and I was so inspired by her beautiful outlook. When one faces deep struggle, there is still so much to be thankful for! Mom had a special little way of simplifying these thoughts, so leave it to me, her wordy daughter, to complicate the issue.

As the days, weeks, months, years have passed, I have continued to be wordy … why use one word, when two will do? (yes, that’s my attempt at levity.) I have so enjoyed these windows of thankfulness, time to focus on the beauty and blessings that are a part of life. Even life filled with “invisible issues” has its bright spots.

On this thirtieth day, I have struggled to narrow down today’s “Thankful list.” As I keep beginning this post then deleting and restarting, I decided to look back five years. On Day 1 in 2012, what did I say? How has my list changed (or not changed) since then?

Today’s 5 things of thanks (and those from July 3,2012)
The 2012 thoughts are italicized.

  1. IMG_2155My husband: friend, lover, father, caregiver – an amazing fellow – T.R. continues to fill each of these roles even more richly – I love you, Sweetie!
  1. Air Conditioning I cannot emphasize enough what a hugely meaningful factor air conditioning is in the summer life for a person with multiple sclerosis!
  1. The hummingbird feeder outside our window – I still adore watching hummingbirds hummerfeed through our sunroom window! About six weeks ago, our five-year-old glass feeder fell onto a brick path and shattered, so I found a replacement through our friendly Amazon account. This new feeder sports a perching bar that these birds really seem to enjoy. In fact, just today I watched a bird perch and drink for at least a minute. She came back and repeated this at least three more times. So fun to watch!
  1. Grandparents: this is the home where our daughters are now. Our parents! – My parents and T.R.’s parents play such an important role in the lives- of our children – and our lives! Five years ago, the girls had been at one of their homes, and I’m so incredibly thankful that Dad, Mom, Dave and Connie are in good health and still run life’s race with us!
  1. Electricity (for the AC, lights, this computer, and so much) – Again, we so often take these things for granted!

Five years ago, I wished to leave simple lists, without lots of description. Nice try, Angie. But I have had such fun taking a closer look at life’s blessings! You may recall that the beginning of this journey was also a response to Mom’s cancer experience. With other blessings, I am quite thrilled that Mom’s most recent follow-up appointment showed that she remains cancer-free!

Today does mark the end of my “Thirty Days of Thanks” blog adventure. What this has taught me is that every day is packed with blessings, so many we take for granted if we’re not careful. So my challenge to myself and to each of you: let’s continue to take note of life’s blessings, living lives of thankfulness.

Day 29 – Thirty Days of Thanks – Goodbye summer break, hello garden blessings

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What a joy it has been to focus on thankfulness as the summer continues on! With just two days left in my “Thirty Day” journey, I’ll make certain to highlight a few that are particularly timely.

Today’s Five Thankful Things:

  1. firstday16.JPGFirst Day tradition – Since our daughters were in preschool, we have taken a “first day of school” photo each year. And our lovely girls agree to hold up a sign and smile each year, with the promise that we will not follow them to college with these signs.
  1. Caring, intelligent teachers – Our daughters have attended public school since kindergarten, and we have been blessed each year with special teachers who really do care about their students. At a time when public schools face budget and political struggles, I have so appreciated Eastbrook Schools and the caring faculty and  at its heart.
  1. berriesBerries still! – Our blackberry bushes continue to be fruitful, and I try to enjoy them when I have the chance. Looks like we’ll be making at least one more batch of jam! And we have several quarts frozen. Fresh berries just can’t be beat!
  1. Fresh veggies from the garden! – Today’s lunch at IMG_0689home came from our garden, picked over the past couple days. Other than the large okra (should have been picked before it grew too large), I enjoyed sweet peppers, smaller okra, cucumber, and tomatoes. Then berries. Oh – and watermelon from our garden!
  1. Rose of Sharon’s first blooms – A few months ago, we planted a few saplings of “Rose of Sharon,” shared by my friend Ellen. Her bush is a combination of white, lavender, and pink blooms, as the bushes grew tightly into each other. But these were just planted here in April, and I hadn’t even expected them to bloom on this first year. What a beautiful surprise to find out this morning that these were both blooming!

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