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.

Goodbye May 2020, Don’t Forget to Take Your Germy Germs With You!

Goodbye May 2020, Don’t Forget to Take Your Germy Germs With You!

Below you will find a few more pictures from the scrapbook of our May under CV-19.  We have completely settled into our new home and are grateful to be here, virus or not.

Tis a pleasure to live in the Ozarks!
We went for a drive in the country on Memorial Day.
Slowly, restaurants in our neck of the woods are opening back up.
Napping buddies.
We’ve had a lot of rain and storms the last few weeks. I see a lily in the clouds, can you?
This little house finch found a good spot to shelter during a heavy downpour.
One of my favorite backyard views.
A friend from church gave me this beautifully fragrant peony…
…and this old world rose.
After some research, I got a couple of new, weighted feeders and a different suet feeder. The seed feeders are on a spring that closes the seed ports when triggered by anything greater than the weight of a couple of finches. I also changed the kind of seed I put out and stopped spreading it on the ground. It has worked to cut off the riffraff grackles, crows, and brown headed cow birds.
Robin
Eastern Bluebird deep in thought.
Mourning Dove
Cardinal
Purple finches, female and male
House finch
Carolina Chickadee, I think. It’s hard for me to tell the difference between a Black-capped and a Carolina.
Chipping sparrow and blue bunting
Red-bellied woodpecker
Downy woodpecker
One of our neighborhood squirrels hanging out on the fence.
Our newest critter, an eastern chipmunk
My very favorite animals, Laudy…
…and Pip!

We’re ready to ease into June with fewer restrictions and, hopefully, greater normalcy. May God be with us one and all! ❤️

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 ❤!

Adventures in Moving House

Well, the deed is done. We moved and have been in our new house for exactly one week! Mercy, moving created a strange brew of fevered, paradoxical feelings. We were always somewhere between excitement and dread; anticipation and foreboding; exhaustion and exultation; and daydreaming about what we were going to do in our new house, then mixing it with the reality of our bank account.

Thankfully, once our old house sold we had about three weeks to pack and get ready to move into our new house. As you know, I struggle mightily with fatigue related to my MS. My Hubby was super busy with work so I created a plan of attack and paced myself to get everything packed and labeled for the move.

The day of our closing finally arrived and we celebrated by having dinner with Hubby’s Mom!

We closed on a Friday and had arranged for family and friends from church to help us move boxes on Saturday. We have such wonderful people in our lives! I sat in a chair and directed traffic so everyone knew where they were going. I’m pretty sure some child labor laws were broken.

Our Cornish Rex cats, Laudy and Pip, made the transition to the new house swimmingly. They hung out in our master bath and closet during the move, then came out once everyone was gone to check the place out. Our new reclining love seat provided a much needed place to take a break. There was little rest for the weary though. We worked hard Sunday afternoon to clear paths and locations for our furniture.

The movers arrived Monday morning at 8:00 a.m. to load up our furniture and appliances from the old house to take to the new. I stuck to my scooter all day in order to make it through the day.

I had done pretty well Saturday and Sunday managing my energy, but I was really struggling to keep going by Monday evening after everything was finally in our new house. Both the cats and I were turned around and upside down.

Somehow everything in life seems to happen all at once. It turned out that my first full infusion of Ocrevus just happened to fall on Thursday of last week, three days after we moved. I expected, and was correct, that I’ve been extra tired since getting the drug. I purposefully allowed myself to work past what I knew was good for me in order to get as much done as possible before the Ocrevus took me down.

Slowly, I’m recovering from my treatment and our new house is feeling more and more like home. I do a little bit each day and my hubby does a whole lot each evening. We’re hoping this is the last move we ever have to make. But even if it isn’t, what I love most about my home is who I share it with 💕.

If Only… NASA, Amy, and Youth

Sometimes the difference between an intricate, highly complex machine working or blowing apart is down to a simple, small component’s integrity at one single moment in time. NASA learned this lesson the hard way in both the Challenger and Columbia disasters. In both cases, the defective components were made months and even years before either shuttle was assembled.

As the symptoms of my MS have progressed, I am reminded of how “fearfully and wonderfully made” (Ps 139:14) each of us truly are. Despite billions of dollars worth of research, centuries of learning about the anatomy and physiology of the human body, and life-long careers devoted exclusively to trying to figure out what goes wrong to make MS activate, there is still so much we don’t know. In the early 1600s, German mathematician and astronomer Johannes Kepler was correct when he described his study of planetary movements as “thinking God’s thoughts after Him”. This statement is true in every avenue of mathematics and science, especially in the study of biology.

Somewhere, somehow, some way, long before I ever had any symptoms of my Multiple Sclerosis, all the viral, environmental, hereditary, and biological elements were just right to kick this disease into action in the biological petri dish that makes me me.

My immune system got all confused and started destroying itself. Thanks to MRIs, I have seen for myself the white smears and dots scattered across my brain and spinal cord where tell-tale signs of damage can be easily seen. It remains inexplicable how it happened, but that doesn’t stand in the way of it being true. All my progressive, worsening problems with balance, walking, incontinence, dropping things, quick and excessive fatigue, tingling, and slow processing are all due to these white globs that made their initial marks nearly thirty years ago.

It’s staggering to imagine that such small blobs etched out so long ago have created the big problems I deal with every day.

Hmm, I feel a life lesson coming on. Sometimes it’s the little, but wrong, things we allow ourselves to do early in life that eventually turn out to be our undoing in the end.

If only someone would have checked the integrity of the O-ring on the right solid rocket booster before the Challenger took off, seven lives would have been saved. If only one day we could figure out what causes MS and how to stop it before other people’s neurologic integrity becomes comprised and they end up going through a progressively worsening disease process. If only we ourselves strove to live Godly lives and to teach the young how to choose right, so many lives would flourish and God would be glorified. If only.

I’ve Become a Little Sew and Sew Thanks to Information Overload

Hello Friends, happy October to you!

It’s been three weeks since I finished my Ocrevus infusions and, thankfully, I have returned to my normal MS baseline. I’ve had quite a few people ask me if I have noticed my MS “getting better yet”. Sadly, the answer is no. There aren’t any cures for MS and there is nothing to take away the damage that has already been done. The purpose of Ocrevus, and all the other disease modifying drugs, is to try to stop any further damage from occurring. There are many researchers working hard to try to figure out how to not only stop MS from progressing, but also how to repair damage to the nervous system in order to reverse the debilitating symptoms of the disease. This is a pretty good segue into the information overload mentioned in the title.

Perhaps you are like me and have had to take breaks from social media and the constant barrage of local and international news for the sake of maintaining your own sanity. Well, about a year ago I signed up to a couple of daily MS research news outlets. They arrive in my inbox each morning and present several summaries and links from around the world to everything ranging from research proposals to current studies in mice (poor little mice, they’ve born the brunt of forward thinking MS flops and successes), comparisons of a current MS drug against a possible new drug, clinical trials in all manner of stages, forums about MS, and even articles by fellow MSers about how they live and cope with the disease.

I typically do like to be on top of all the latest MS information, but here lately I’ve been feeling like it’s all too ivory tower. Down here in the trenches, at least in my trench, it’s muddy and wormy with the walls always caving in and needing constant repair. I’m covered in the dank, earthy stench that never leaves my nostrils, even when I dare to raise my head in an effort to try to go over the top, despite having trench-foot. To top it all off, a hail of bullets marked MS come flying over my head intermittently keeping me in a state of constant vigilance and exhaustion.

So, at least for now, I’m going to lie low down here in my mucky but familiar trench and try not to worry about what the people in the ivory towers conjure up for the next move. I’m not giving up on it and I’m glad someone is in the ivory tower, I just need a break from it all for a while.

To that end, about a month ago, I dusted off my sewing machine, turned the music up, and started stitching away! My Mom was a wonderful seamstress and even owned a fabric store when I was young. She showed me how to sew but it didn’t come as easily to me as it did for her. I took a sewing class in high school and had a few lessons through 4-H, too. I’ve sewn a few things through the years as an adult but never really thought of it as something I could get into as a regular hobby. That is until now. I am thoroughly enjoying myself and looking forward to each new day to get stuck in to some new project! The first one was this little sewing catch-all.

I used the leftover material from the catch-all to make some cute bowl huggers for the microwave.

While it is true that some days I am too tired to sew at all and other days I have to take breaks after just a little bit of sewing exertion, just being in my little sewing space brings me joy. For example, looking at all this thread…

…and ALL this fabric with cats ❤️ brings me inspiration for new projects to try when I eventually do have energy!!

I finished up a couple of these boxes yesterday so I would have a better way to see and store my fabric.

I’ve made several things for others, too, which has given me joy and purpose. Fair warning: If you get a Christmas gift from me this year it’s probably going to be homemade. But don’t worry, not all the fabrics I’ve been stashing away have cats on them 😉.

Signing out from the trenches and hoping you’re upwind from me!

Amy

Bike 150, Jammies, and OJ #2

Hello Friends!

It’s time for my next heapin’ helpin’ of Ocrevus! I’m writing this at the hospital while the Ocrevus Juice (“OJ”) is going in.

Thursday, August 29, 2019 was the big day for my first infusion. I was excited to get the OJ going…
… and today I keep thinking that I am willing allowing this whole business to happen to me at a cost of $17,000 per infusion.

My life has been a pretty low key affair since I posted last. As far as the OJ is concerned, I felt decent and it seemed I even had a bit more energy than usual for the first couple of days, despite a light, chronic headache. Naturally, the penny eventually dropped and on the third day a monstrously oppressive fatigue settled in. It felt like I was trying to balance a bowling ball on my neck instead of my head. My legs were concrete pillars and my feet were made of iron. This tyranny lasted for five days before finally releasing me to a much kinder, though still pretty strict, general tiredness. I wonder how it will play out this time. I’m hoping it demands rocky road ice cream 😉.

Todd and I did have one HUGE outing this past Saturday.  He rode in the MS Bike 150 in my honor 🥰. I was so proud of him. It was brutally hot that day but he pushed on and completed 102 miles! As I’ve mentioned before in previous blogs, I don’t drive much anymore because it makes me tired. So, it was a ginormous effort for me to drive 80 miles to the finish line to pick him up. Both of us gave it all we had in the name of fighting this crazy disease. I ended up paying for the effort for a couple of days. On the upside, I spent two days in my jammies snuggling with our cats whilst alternatively watching TV and reading.

My hero closing in on the finish line.
Sweating it out in order to cheer my Todd the last 100 feet. If you squint you can see the orange finish line behind me.
Time spent with cats is never wasted.
~ Sigmund Freud

I have no idea when I will feel lucid enough to write another post. But I do sincerely thank you for joining me as I meander through the wilderness that is MS.

May God be with you.

First Dose of Ocrevus Is in the Books!

I kept a running log yesterday of how my first experience with Ocrevus went. It was a long day for me, but it went pretty smoothly. Even so, I’m glad it’s over because the anticipation of the unknown was getting pretty heavy to carry. In hind site, I don’t think it was the best decision for me to join a Facebook Ocrevus group. There were some pretty extreme experiences shared and a fair amount of misinformation conveyed about both MS and Ocrevus. Each person’s body reacts differently to the ever growing range of MS Disease Modifying Therapies (DMTs), though. This was mine.

7:15 Checked in at Hospital Admissions
7:30 Rode up to the Infusion Center via the scenic route with a blue haired volunteer who got lost in the hospital 😂
7:50 All checked in and IV lead placed then taken to a chair. Waiting for pharmacy to bring my drugs up.
8:33 Drugs arrive. Benadryl, Solu-Medrol, and Saline into the IV first… I’m getting sleepy. Solumedrol is flowing, it feels a little cold as it hits the vein. They gave me a couple of Tylenol, too.
8:40 The nurse starts the Ocrevus Juice (O.J.😉) and says, “You’re off like a herd of turtles, Sister.”
8:51 I have a funky sweet metallic taste in my mouth😝.
9:50 They’ve now bumped up the infusion rate twice and all is well other than a mild headache.
10:15 The rate of infusion was bumped up again and all is well.
10:35 Well, I just had a mild reaction consisting of a worsening headache and dizziness. They are pausing the medicine for 30 minutes and then they are going to slow the rate of infusion down when they resume it. So… it’s going to take a bit more time than the originally planned 4.5 hours.
11:00 I feel better now that they’ve stopped the med and are just running saline.
11:24 Infusion resumed and I’m eating the lunch I packed for myself.
11:55 Bumped up the rate again and I still feel fine.
12:24 Last bump up to the same rate that gave me the headache and dizziness. Fingers crossed it’s okay now. There’s not much left in the bag.
12:40. I have the slightest of headaches but the bag is so close to empty that I’m going to ride it out.
12:52 Ocrevus half dose #1 is in the books! I have to stay for an hour to be monitored but then I’m free🕊️!!
1:50 The last drop of the saline has dripped, IV is out, and I’m heading out for a dear friend from church to drive me home
2:20ish I’m home, ready to shower, and put my jammies on. I have still have a headache so time for some Advil. The icky metallic/sweet taste won’t budge. The metallic part is the very familiar taste of the Solu-Medrol. I guess the sweet part is the Ocrevus because it started within seconds of it beginning.
3:40 I walked around the house for about 25 minutes doing little chores here and there before I felt the usual, sudden onset of fatigue settle in and bind me to the recliner. I’m going to be here a while, but I don’t think it’s related to the Ocrevus, just my typical MS. The headache remains entrenched, though, and it’s definitely from the infusion. I’m not sure which drug has caused it, Solu-Medrol or Ocrevus or even the two together. I do regularly get headaches from Solu-Medrol, but not typically until closer to the 24-hour mark and Advil or Tylenol shuts it down pretty quickly.
6:00 Ate dinner and resting. The headache is still slowly throbbing away. It’s not terrible, just there.
8:15 Added a couple of Tylenol to my handful of night meds and got ready for bed.
8:30 Tucked up in bed, getting ready to pray, and hoping the headache gets tired of hanging around and runs away with the dish and the spoon or hitches a ride with the cow jumping over the moon.

Friday, August 30th
7:20 The headache is gone!! I’m flushing red from the steroids and feeling tired but other than that I’m great😁.

I just have to survive the next couple of days while the steroids ooze out. I go for the second half dose two weeks from yesterday, September 12th. And then…I don’t have to go back for six months in order to get my first full dose!

Thanks for hanging around to read this and for the many who have reached out to me to let me know they’ve been praying for me. I know the prayers have made all the difference!

God be with you,

Amy

Date Set for Ocrevus and I Have Two New Friends

So, last time we met here I told you my Neurologist and I decided it was time to try a new Disease Modifying Therapy (DMT) named Ocrevus. It turned out that making the decision to try the drug was easier than tying to get it going.

Somehow my insurance got my name mixed up with someone else’s. It took about a week to get it all sorted and prove I don’t have Hepatitis B and can walk more than 5 feet. I told my dad about the mix up and he said that the same thing happened to him years ago. He got a letter in the mail saying that his hysterectomy had been approved 😂🤣!

The next step was to schedule with the hospital the first two infusions, given two weeks apart. Over the course of trying to get my insurance information straightened out I had to speak with my neurologist’s medical assistant several times. She had warned me that the Outpatient Infusion Department at the hospital was “understaffed and didn’t have enough chairs” so to expect a bit of a wait. Wow, was she ever right. The nurse I spoke with apologized when she told me the earliest they could get me in was (at that time) a little over a month out, August 29th.

Five days ago I started a regimen to get my current DMT out of my body before beginning Ocrevus. I’m mixing two packets of finely ground prescription death into water and forcing myself to drink it every eight hours. I live in dread of 6:00 a.m., 2:00 p.m., and 10:00 p.m. for another six days 🤢.

About two weeks ago I was introduced to two new friends. They’ve turned out to be very supportive and affable, as they are willing to go just about anywhere I want. It’s nice to have friends.

Hopefully, I will be able to post something soon after my first dose of Ocrevus.

Thanks for following along!

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.