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.

Survey Says…

I hate to brag but I’m a pretty important person. No, seriously.  And you should be a little worried. Here’s the lowdown.

Around late February of this year, after my reluctant but necessary full retirement owing to MS, I decided I was going to need something to do at home to keep me from going completely doolally.  If you’re reading this then, for better or worse, you know the fruit of one of my endeavors – blogging. As much as I’d like to say I’ve thrown myself into writing and have become seriously self-disciplined, the mood actually only strikes once in a while.  On a cheerier note, I’m probably not far from being a serious, internationally-ranked Spider Solitaire contender.

Obviously, I needed more.  Something important that would better humanity.  An avenue that would leave a lasting, positive imprint on the lives of others.  So, I joined Survey Junkie.

Every day my opinions shape your world.  I answer for the masses about real-world, important things, like what we really want from our toilet paper; the best logo for an underwear brand that captures the qualities of “durability and comfort”, the “two things we all want” from our undies; and have carefully chosen between proposed TV commercials to guarantee that the ad fairly represents the company’s commitment to keeping you “safe” while also making you look “prosperous”.

Some survey questions have been easy and fun, for example: Do you use slang?  Fo’ sho’ At what age do you think it is no longer appropriate to you use slang? 89, ‘cause my Grandpa always said he was one cool cat who wasn’t afraid to get on the horn to coppers when he saw someone on the hooch who needed to go to the big house. Did you now that most people think anyone over the age of 26 should not use slang?  Dude, that’s heavy.

Some questions have taught me that OCD has a functional side. Which restaurants have you or anyone in your household visited at least once in the last 12 months? One moment, let me just whip out my Alphabetized, Annotated, and Ranked by 5-Star Rating System of Restaurants Visited Between May 2018 – May 2019 list.

Some questions have been grouped into blocks and straddle between a screening test for Dementia and a social awareness questionnaire. Have you purchased potato chips within the last three months? Are you judging me? What brand(s) of potato chips have you heard of? What brand(s) haven’t I heard of?! Is it important to you that the company who made the potato chips contributes to better their community?  You mean frying potatoes and/or corn into thin, tasty wafers doesn’t count as bettering the community?Would you consider changing the brand of potato chips you normally purchase if you knew a different company made more of a commitment to reducing their carbon footprint than your current chip company? What?  I can’t hear you over the crunch of my Fritos.

Today I took an eight minute survey that was top secret.  I had to agree that I would not reveal the name or contents of the survey among my friends or family, nor would I share anything about it on social media platforms.  See, I told you I was important. I’m doing classified work.

Not only is my opinion important, but valuable too.  In the last two months I’ve earned $22 and counting. The word is out that my opinions are great because I get between 10-15 offers a day to participate in a new survey.  I guess you could even say I’ve become a professional at my new gig.

I’ve always known MS had a few perks, like getting to park in handicap spaces and sitting in reserved areas for my wheelchair at stadiums.  I didn’t know that the virtually home-bound state it has left me in would one day lead me to this new and exciting career in the world of surveys.  It just goes to show that every cloud really does have a silver lining. Oh, I gotta go, someone needs my opinion about which font on the wrapper of mini candy bars properly conveys the rich, creamy chocolate within!

Guilty as Charged

I tend to be a rule follower and a planner.  I obey authority figures. I respect laws. I’m the annoying person who reads all the directions, twice.  I look at maps before heading somewhere new. I lay out my clothes the night before and meal plan at least three days ahead.  In other words, negative consequences are generally a sufficient deterrent to keep me on the straight and narrow. Well… almost always.

Sometimes a person has an obligation to disobey, and in a calculated, planned coup, rage against an authoritarian, oppressive regime, even if the result is certain defeat.

In this spirit, I make the following confession: I, Amy Renee, did purposely, and with a full understanding of the probable outcome, defiantly spend 15 minutes weeding the landscape in the front yard on the afternoon of April 27, in the year of our Lord, 2019.

Statement of Reason: The landscape was rife with nefarious weeds that had invaded upon my property.  On the date in question, the sun was shining and the sky was a beautiful, clear blue which did beckon me forthwith to act upon the foreign invaders.

Defendant’s Previous History: The defendant has a long history, dating back 29 years, of rebellion against the established rule of law, specifically related to over exertion.

Sentence: As the indicted has, of her own admission, willfully and knowingly acted against the long-standing, acting, dictatorial powers of Multiple Sclerosis, she shall be sentenced to between three days to two weeks of excessive fatigue, difficulty walking independently, embarrassing clumsiness, and intermittent loss of bladder control.

The court would like to ask the defendant how long it will take her to learn her lesson. “Probably forever, your honor.” It certainly seems so. Court dismissed.

Shopping at Full Speed

Its bright red concentric circles beckon to land me squarely in the store. The aroma of freshly made popcorn and your choice of hot or cold, legally addictive, caffeinated beverages magically combine to infuse the air and make you feel like you want to stay a while.  It provides ample opportunities to people watch a slightly trendier, but still as strange, menagerie of folks than it’s yellow-sparked logo competitor. At any given time, it probably has more tattoo and pierced skin shoppers with hipster haircuts than any other place in town.  Home goods, furniture, clothes, undergarments, electronics, books, toys and games, food, candy, lotions and potions, a pharmacy, cleaning products, pet supplies, seasonal decor, greeting cards…pretty much everything a first world, middle class, 21st century human needs to function in our consumerist society.

I used to be able to drive myself to this shopping mecca and make my way through any aisle I chose at a leisurely pace.  When my cart was full and I had breathed in all the buttery-laced air I wanted, I could stand around in the check-out lane with no worry of how long it would take to pay, walk back to my car, and put all the bags in the backseat before finally driving home.  I could also bring the bags into the house, empty the contents, and, one by one, put them away into their respective places without care for how much energy I expended.

That was then and this is now.

It’s been well over three years since I dared to make this excursion on my own.  Like so many other things when living with MS, doing activities on my own didn’t abruptly stop.  My independence diminished similar to how individual flurries accumulate in a gently falling, long, slowly moving snowstorm.  Flake by tiny flake they collected until one day I found myself buried under the avalanche of symptoms, and shopping on my own became yet another task that fell into the “insurmountable” category.

Nowadays, my hubby chauffeurs me into town and parks in one of the handicap spots conveniently located close to the door.  He drags my wheelchair out of the trunk and together we spin our way through the store. I hate riding in those motorized wheelchairs with a basket on the front that beep every time you need to turn around or want to see something behind you.  Instead, I’ve learned the art of balancing two handbaskets on my lap, fitting everything we need into them for the week. More difficult still has been learning to compromise and change our individually-preferred shopping styles in order to make our weekly Target run pleasant for both of us.  I’ve (mostly) given up my insistence that he push me at a leisurely pace through each isle of my favorite sections. In turn, he has (mostly) stopped whizzing me so quickly that we leave two-wheeled skid marks on the tile. Sometimes we settle on him leaving me in one aisle near something I want to look at while he flies through two or three other aisles.  

This approach has fairly easily carried over to other shopping venues like the grocery store and DIY stores.  Someday I hope it will overflow into shopping for clothes at department stores, but I’m not holding my breath.  I have to admit that watching someone else shop for clothes has a limited entertainment value. However, it is kind of fun to ride through the rest of the mall so fast that you can’t tell if the blue-haired people you pass are teenagers or grandmas!