Thursday I experienced the first half dose of my new MS medication, Ocrevus, aka ocrelizumab (#5 of the DMDs, as you’ll recall from my previous post). I will receive the other half dose later this month, but so far I am encouraged by what I have experienced! I had joined a couple Ocrevus support/information groups on Facebook prior to the infusion so I could ask other MSers what advice they might have for me prior to my first half dose. I also took that opportunity to ask if others were also allergic to Tysabri but maybe had success with the Ocrevus, as they are of the same drug class and I wanted to know if I should look out for any possible allergic reactions other than the chest pressure and inability to take in full breaths, as I had dealt with following my five months of Tysabri back in 2010.
I am forever grateful of the few group members who assured me that they were able to tolerate Ocrevus much better than Tysabri, especially the woman who explained that there were things that could be done to counter some of the common side effects known to occur during infusion. Some of the things she offered that my nurses would/could assist with included: slowing the rate of infusion, administering more corticosteroids and/or antihistamines if allergic reactions occurred, and she also informed me that I would receive steroids and an antihistamine prior to the start of the Ocrevus infusion.
Since I was armed with all of this knowledge ahead of Thursday’s appointment, I felt fully prepared for what I would encounter when I arrived at the infusion center. I woke up an hour before my ride would arrive to bring me to the infusion center and promptly packed a bag of necessities: my laptop, tablet, cell phone, and chargers; a book, in case I got bored of blogging and Facebooking; snacks, since I knew I would be going hours without eating after breakfast; socks, in case the infusion center was as cold as normal; and extra water and Wild Cherry Pepsi to drink. Along with the snacks, I had made sure to have along hard candies to suck on so I didn’t have to worry about any “pennies in my mouth” taste that comes from the infusions of corticosteroids. I brought Werther’s Originals & Jolly Ranchers, my favorites for any time I have had to endure that awful metallic taste, which any MSer could tell you is dreadful (in fact, every time we have yet another flare-up of MS, we “get” to suffer through more steroid therapy and I will be the first to tell you I am thankful I learned that little tidbit early on in my diagnosis!)
My nurse of the day, D, has always been a pleasure to work with, but I was not a fan of the other nurse (who we’ll call “Nurse Drill Sergeant,” mostly because I couldn’t remember her name, and also because I didn’t appreciate her having to take over a few times when D was helping someone else or off getting lunches or supplies or whatnot; I’ll explain more in a moment about Nurse Drill Sergeant). Once I chose my recliner for the day, D gathered her necessary supplies to start my pre-medications and let me get myself situated with my things. She informed me that after she gave me the Solumedrol (the corticosteroid) and Benadryl injections, I would start an hour of observation time, so I would have plenty of time to start blogging and Facebooking. That first hour seemed to fly by and soon D was back to start my Ocrevus infusion.
A little while into the infusion process, I began to notice my throat was feeling a little scratchy and more mucus-y than normal and I constantly felt the need to clear my throat, though there was nothing actually in it. I had developed a headache as well and I reported all of the side effects to D who promptly stopped the Ocrevus and armed herself with another shot of corticosteroid (SoluCortef this time) to inject into my bloodstream in an effort to alleviate the side effects. D informed me that the timing of my reaction was pretty on par for any MS patient when first starting Ocrevus, which immediately relieved any worry that may have begun to develop in my mind. She joked that she could almost start a timer for the reaction to occur at right about the 2 hour mark, and I don’t doubt that, given D’s knowledge in her field! Once the SoluCortef took effect, I was able to resume the infusion but this time she instructed Nurse Drill Sergeant to lower the rate of the liquid in order to (hopefully) prevent further reactions from happening.
Throughout the entire process, I had to have my blood pressure and other vital signs checked at regular intervals, but I became quite irritated when Nurse Drill Sergeant made me turn off all of my electronics – tablet, laptop, AND cell phone – because she was concerned that it was causing my increased blood pressure reading (around 140/80). She actually left my curtained quarters to quickly return with a folded up piece of fabric which she wrapped around my head, covering my eyes, and insisted that I lie back on the recliner with my eyes closed and do nothing else because she was so convinced that I was somehow stressed by my electronics!
(Ok, I may not have a degree in nursing, but what I do have is over eleven years of experience in dealing with the unfortunate consequences of how my body reacts to certain medications used to treat MS, especially corticosteroids!! I can assure you thata slight rise in blood pressure is typical, especially with SoluMedrol, SoluCortef, and Prednisone!!! How a nurse in a very busy neurological infusion center didn’t even think about that possibility is beyond me, especially after I heard D inform Nurse Drill Sergeant that she had to give an additional 250mg of corticosteroids!!)
Anyway, as soon as Nurse Drill Sergeant left my area and I heard the curtain close behind her, I removed the fabric from my eyes; I knew I wasn’t going to be able to lie there with eyes closed for very long, especially after my 12-hour sleep the night before! I left my laptop on the table next to me (in case she returned to me before D could) and simply got my tablet out and proceeded to play my games instead. Forgive me, Lord, but I’m not going to listen to a nurse (who wasn’t even assigned to me that day) tell me that my blogging, Facebooking, and game playing are causing a higher blood pressure instead of the obvious (and more likely) reason, which also happens to be “like clockwork” for me for every single flare-up I have had to endure days of high doses of SoluMedrol in order to treat those exacerbations (and those infusions are typically followed by a Prednisone taper, so I’m used to this temporary higher blood pressure).
I was grateful when it was Nurse Drill Sergeant’s turn to step out to have her lunch because I was able to talk more to D about my blood pressure and found out that she agreed with my assessment, because this was also the first elevated reading they had taken on me all day thus far! (D also assured me I could return to my laptop if I wanted; though by that time I was getting so close to the end of the infusion that I just played games the rest of my time there). I am looking forward to hopefully having D for my nurse on Tuesday, May 26 when I go back for the other half-dose because if I am somehow assigned to Nurse Drill Sergeant for that appointment, I will have a difficult time keeping my mouth shut if she attempts to stop my calm, happy blogging and Facebooking again! (I suspect I will have D again, though, since my new neurologist and D are both based out of the office that is much closer to my home – the one that had been temporarily closed due to COVID-19.)
Once the remaining Ocrevus had dripped its way into my bloodstream, D returned to unhook me from the needle and give me my after-care instructions, complete with the phone number to reach the on-call doctor in case any subsequent side effects showed up at home, which was a possibility for up to 24 hours after treatment. I had apparently timed my call to my ride perfectly, as he pulled up to the entrance just minutes after I had stepped outside! (Thanks again, F!)
One thing was for sure from what D had told me I may expect – I was wiped out! I couldn’t believe that I had almost zero energy once I got home, even though I had an (overly) full night’s sleep the night before, which probably only occurred because I had spent Wednesday evening hiking down to “Fern Gully.”
Time for another aside: Fern Gully is my term of endearment for a particular portion of my family’s land that is tucked back behind the farmland, past the tree line and can only be accessed by descending the steep hill to the bottom of the valley that sits on the south end of my late paternal grandfather’s land and connects to distant relatives’ farmlands. I affectionately call it “Fern Gully” because, well, I loved that animated movie as a kid and because there is a fairly large patch of ferns growing down at the bottom of the hill, in the cool, cozy shade of all the oak and boxelder trees that grow around the property. Even on my healthiest days, the hike down to Fern Gully is enough to bring my energy level down to a snail’s crawl, so I typically sit in the grass on the edge of the plowed fields once I have successfully made it back up the hill, before I trek my tired ass back to my parents’ house on the north end of the property, much closer to the highway. From the top of the hill back to the house is approximately three-quarters of a mile, so I’m typically ready for a nap by the time I make it home. Wednesday night, I was out like a light for the next 12 hours!
So, imagine my surprise when I felt exhausted once again following my infusion, even though all I had done Thursday was sit in a comfortable reclining chair and receive my first half-dose of medication to suppress my immune system and slow the progression of the multiple sclerosis that has had a long time to wreak havoc on my brain and spinal cord already. I was fortunately able to keep myself awake until it was a more opportune time to sleep than the middle of the afternoon, but a couple hours after my ride dropped me off at home, I had begun to feel the tightness return to my upper chest and throat. I was grateful when my oldest nephew, L, stopped by with his girlfriend to drop off the Benadryl I requested, and less than an hour after I had taken it, the side effects disappeared. I have had no other side effects since, so I will call MS DMD #5 a success thus far! My hope that I find an effective disease-modifying drug to ward off Bertha may finally be a reality (fingers crossed)!!
Please send prayers for my continued success, because I cannot let Bertha win this war! I am tougher and much more stubborn. *wink*
I wasn’t sure what I was going to write about next and then inspiration came to me in the form of a Facebook conversation with a friend. (Thank you, btw!! You know who you are; I don’t want to add anyone’s names to my blog unless I get their permission first so for now, everyone except me – and I guess Bertha – will be designated with one or two letters and any professional titles, should they apply. And yes, I am aware that I’m long-winded, but I’m at least a little entertaining, right?)
Anywho… I was giving this friend a recap of all the MS DMDs (disease-modifying drugs) I’ve tried because it has been like HELL to find a good one for me since I was diagnosed, and I figured today would be a great reminder for myself as well, so without further ado, I present to you:
MY HISTORY WITH MS DMDs
Ok, so we’ve already established I was diagnosed: April 7, 2009
Rebif (aka interferon beta-1a), summer 2009 – December 2009, self-injected shots 3 times weekly (the needle kind, not the alcoholic fun kind)
Was required to try (but be unsuccessful with) some other med over my first preference (shown second) to be approved for #2;
Side effects I remember: body aches as if I had the flu I every single day – and not just on days I had to inject (just happened to be worst on injection days) and soreness at injection sites;
Injection sites rotated with each injection: backs of arms, lower back/hip, stomach, & thighs (so basically where all my fat is padding me quite well –meh).
Tysabri (aka natalizumab), January 2010 – May 2010, IV medication, administered by nurses
This was my most desired MS therapy at the time, as it required the least amount of energy and time (monthly infusion I received at Noran Clinic’s infusion center);
Side effects I remember: at first, slightly harder to catch my breath / take in large breaths and tightness in my chest for about 2-3 days in the first month & increased almost exponentially in length of duration of symptoms with each and every month’s infusion (so, for FIVE months!!);
I loved getting to take a DMD for one appointment each month, because it fit well with my lifestyle (which really hasn’t changed much over the years), but I’m glad Dr. D finally took me off because I am allergic!! (I still don’t understand why he didn’t figure that out sooner – I reported it every month!);
Because of my allergy, I spent the rest of 2010 letting the Tysabri flush from my system with daily puffs of an Advair inhaler and also had to use an albuterol inhaler for the first and ONLY time in my life before I could even attempt another DMD! It took longer to get that flushed out than it did in all the hours spent at Noran’s infusion center receiving the infusions, when compared in total hours per month!
Copaxone (aka glatiramer acetate): tail end of 2010 or early 2011 – around 2013? (I know it was for at least 18 months), self-injected shots, once daily
Since I was already quite used to administering self-injected shots by this time, I figured I could handle rotating the sites on my body again, only this time was easier because it was done daily (and I wouldn’t have to remember which days to inject and which days to skip completely);
Side effects I remember: mostly just annoyed with the more painful injection sites for me(backs of arms and in thighs), but I got good at skipping one or another when I had too many red bumps from the daily injections (& I’ll admit, I stopped the arms before too long because I was literally crying from the pain that remained on those sore red bumps);
Unfortunately, I thought I was doing great on the Copaxone, but apparently I had too many exacerbations and too many new lesions in my MRIs for Dr. D to allow me to continue with Copaxone (though, this is around the time I start paying more attention to how we communicate at appointments because I began to get this nagging feeling from my gut that I couldn’t shake…I only wish I would’ve listened to my gut sooner than 2020, but I digress.).
Tecfidera (aka dimethyl fumarate): around 2013-14(?) with several restarts of it 2014 – 2017(ish), first (& only) oral medication I could try, twice daily (as close to 12 hrs apart was stressed to me several times throughout the years)
Looking back, I know I thought I preferred an oral medication, but truth be told, I am AWFUL at taking several doses of any one medication in a day, unless I can take them all at the same time – upon waking and as part of my bedtime routine (years of attempting to remember to physically ingest multiple medications to treat ongoing symptoms proved this to me, even with alarms, so please don’t tell me I didn’t struggle with it because that’s not even helpful at this point in time);
Side effects I (clearly) remember: with each dose, I got the unfortunate red face and chest we affectionately call “flushing” in MS circles, like that somehow softens the blow of feeling like you are on fire while suffering hot flashes (while still likely too early for perimenopause or menopause) and the only source of relief came if I also took a Benadryl and an aspirin – with each dose – so I now could look forward to 6 more pills a day added to my 20+ daily pills to treat ongoing symptoms (I think at my highest daily total of pills & vitamins was around 32, if I remember correctly);
I decided to do my own research into alternative therapies and other DMDs to begin to look into other ways of being healthier and I was my own lab rat for a while – I went without the Tecfidera for close 18-24 months to see how much my lesions would progress, and that nagging feeling about my neurologist persisted (and got stronger). I honestly felt better most days during that period – I had even lost 35-45 lbs. and was consistently exercising!
Now would be a great time to sidebar before I get into my soon-to-be fifth attempt with DMDs and tell you about those constant doubts I had been gradually allowing into my thoughts about Dr. D, and how it came to be that I (kinda) grew some cojones and asked for a referral to another MS specialist within the same clinic (except I used the wimpy, easy excuse in the end, that I needed a neurologist a little closer to home – which was true, but the “cop out” way out).
These doubts that had begun to creep into my consciousness were more like suspicions that Dr. D had some strong favoritism toward some of the DMDs, as in he appeared to have been stressing his recommendations of: Tysabri (yep, the miserable allergy-causing drug that felt like a lifetime of waiting for its lasting side effects to finally dwindle) and Tecfidera. Yep, the pills I consistently (yetcompletelyaccidentally) missed – I could usually remember one dose per day for over half the month but that meant I was missing around 15-20 pills every single month! Sadly, I only discovered my errors when the very nice Biogen staff would call and tell me it was time to order the next month’s supply and every month I was left bewildered to why they were calling already!
I had also started noticing key phrases and repeated topics with Dr. D during my appointments with him (mostly during 2014 to 2016), but I was more carefully aware of the language we used with one other. And when I focused more attention to our nonverbal cues in those appointments, I knew it was probably time to start researching other neurologists for another second opinion. I was quickly losing faith in this man.
It wasn’t until the winter of 2016 (I believe, perhaps early 2017) when I collected up the courage to call the Mayo Clinic group and schedule an appointment to see a neurologist who specialized in MS in my home state of Wisconsin, but the downfall was that it was 90 miles east of me – almost triple my drive to Noran!
I liked the neurologist I saw in Eau Claire, but I wasn’t sure that would be the ideal solution for me because of the distance and I wasn’t always going to be healthy enough to drive myself. So I went back to Dr. D (I just saw less of him, since thankfully Bertha was quite silenced for a nice long stretch). Then some things happened at the end of 2017 that led to my request for a transfer with my national brand retail employer to the Kansas City metropolitan in March 2018 (and I don’t regret that for a moment, but that is for a much longer post another day altogether) and I had to find doctors in the state I resided. My adventures in KCMO unfortunately came to an end in September 2019, after only 18 months of living there, because most of 2019 was spent between medical leaves of absence due to what I shall now refer to as The Wrath of Bertha (or The Wrath, for short).
I think now is a good stopping point for this post, as writing this post and getting it into my blog has taken far too long, due to some unexpected symptoms showed up – from a different diagnosis I had received back in my high school years – and almost immediately after I finished writing my rough draft, I spend 40 consecutive hours awake and with more energy than I think I’ve had in over a decade (possibly longer)! My thoughts were all over the place and, although they were mostly just new ideas for the blog and several new topics I wanted to learn about on my self-guided daily education time, my brain finally wore me down enough to get some near coma like sleep – for 11 hours.
Though, the best silver lining I got out of that “manic episode” was when I awoke yesterday in the early morning (12:30 a.m.), I knew that getting out of the house awhile on a long drive would be the best thing for me. I had some things I had collected together for a friend who has celiac disease (she can’t have gluten) and for one of my favorite cousin’s adorable kids, so I decided that a middle of the night drop off to their front doors would be great therapy for me. I was 100% correct: I left my house and took my time, driving on cruise control at the posted speed limits along the way, all the while the popular Christian music I had been drawn to more lately cranked on my stereo. God and I had the best four hour drive I have experienced in quite some time. I was finally remembering to be completely present in the moment and was able to keep my thoughts focused on the task at hand.
Wishing you all the same comfort I got on my drive, because that… was blissful.
I haven’t known Bertha a terribly long time, but I didn’t like her from the start. I mean, sure, she started off fairly tame and she seemed inconsequential, but that was before she had even begun to show her true nature! Because of her, I have been in the hospital more times than I care to remember. She’s caused me to miss out on months of work in a job I once loved. Bertha caused me to leave several jobs – including that one – because she treated me so unkindly!
I may be getting ahead of myself, though…
My name is Kelly and I met Bertha on April 7, 2009. She appeared to me so timid and small that day. It was a dreary Wisconsin day, in the season that is an early spring and a late winter simultaneously, and the rain trickled lazily from the steel gray clouds that felt sadder than they felt angry. Honestly, I’m not even sure if that memory is accurate, or if the eleven years of dealing with Bertha have simply recolored them monotonously. Other than my initial introduction to Bertha, it was a typical day off from my retail job, which really meant I wasted hours, mindlessly watching television and playing one of a multitude of games on my phone while also consuming copious snacks throughout the day. There was nothing else remarkable about that Tuesday, so I am actually quite relieved I don’t have any vivid recollections from the day my life would be forever changed.
Perhaps I should begin with a little background into what I was before Bertha so it will help you understand just how much she was able to impact every aspect of my life, in little more than the last decade. We’ll come back to Bertha.
I was born, the youngest of K and B’s three daughters, in May of 1981. My oldest sister, Ko, was born in May 1975 and Kj, the middle child, joined her in March 1978. (My parents planned us all nicely, didn’t they?)
I realize that it seems a little odd to mention birthdates of my family at this point, but I assure you, these bits of trivia will give you more insight into my personality and maybe some of my beliefs. For instance, would you believe that I’ve been stubborn since before I actually graced this world with my presence? My mom was told by Dr. A that they expected my birthday to be around April 20. Fun trivia: it’s the first day of my astrological sign, Taurus. I only mention this because it is where my argument for my fetal stubbornness begins – and ends. (This claim is in no way an official, scientifically-backed claim; it is merely an observation which makes absolute sense in my life, though I don’t fully believe in astrology.) My birthday is instead May 20, the last day of Taurus, which makes me one overcooked bun in the oven! I had a full head of hair and was already losing my first layer of skin upon arrival. It was also the beginning of the many frustrations I caused my poor parents to endure throughout my life, but we’ll get to that in due time.
Back to our family birthdays: my late arrival screwed up several “almost patterns” my sisters had staged so perfectly for my arrival – if I came on my mom’s projected due date. So, we could have had May, March, and April birthdays, but I thought it more appropriate to line up our family of five’s horoscopes instead: Aquarius, Pisces, Aries, Taurus, and Gemini. One of my sisters was born at 10:01 p.m. and the other at 11:01 p.m. What about stubborn Kelly, the anti-morning person? Well, naturally, I was born at 8:36 a.m. I am s-t-u-b-b-o-r-n! I insist on doing things my way and on my terms. But hold on, we’re just getting started!
When I was sixteen, Kj and I were bridesmaids in Ko’s wedding to my brother-in-law, S, whom she had been dating for around four years prior. Five years after their nuptials, Ko and I stood up for Kj’s wedding to my brother-in-law M, after – you guessed it! – roughly four years of dating. (Since I was the tagalong baby sister, this means I have known both of my brothers-in-law from young ages – I was going on 13 when S first met our family, and was going on 17 when M was introduced.) You guys, these two are much more like protective older (blood-related) brothers than they are “just” my sisters’ husbands, and I am blessed! Anyway, we were still on the topic of my blatant disregard for possible family patterns. Well, as I write this, I have never dated anyone longer than about two years, have never married, and have zero children. Since I will celebrate my 39th birthday this May, I’ve only missed setting their “almost-pattern” by approximately thirteen years (and counting).
The next weird near-pattern numbers I will most likely ruin? My Dad’s parents were six years apart in age, like both of my sisters and their respective husbands. My Mom’s parents were two years apart, like my parents are. Interestingly enough, I mostly have dated guys my age or within 2 years of my age, with only a couple exceptions (and completely unintentionally, I assure you). At this rate in my life, who knows if I’ll ever even get married! I could continue, but I won’t bore you with more of the random thoughts I’ve analyzed over the years with regards to my stubbornness (and my need for individuality). You get it by now, right?
Great! Because another very prevalent trait of mine is my nerdiness. I have always loved school and learning. When I was still too young to attend school myself, my sisters would come home on the bus and play “school” with me. I definitely couldn’t give examples of those days, but I know they made it fun for me. I have to give them a lot of credit for my ability to read at the age of four, because they certainly had a huge role in developing my love of learning. I am unashamed of being called a nerd or a geek because that is the furthest thing from an insult, in my opinion – I wear that badge with pride!
In fact, I was the kind of nerd who would write book reports and research papers on my summer vacations; the geek who still enjoys calculating correlation coefficients (among other statistics) to gain further understanding of the relationship between variables. I love learning new facts about players I love to follow, especially when they’re setting new records or approaching existing records. I am the kind of learner who seeks out answers to random questions that appear in my thoughts and then, in finding the answer to the first inquiry, I come up with subsequent questions and answers to those questions and repeat this process until I’m wandering aimlessly into the bottomless rabbit hole I created in my quest for knowledge. If it sounds exhausting, you’re right, it is! But it is also very rewarding when I can put that new knowledge to use, so I unapologetically continue my lifelong learning.
I am also a contradiction, because I am just as motivated as I am lazy, as physically healthy as I am damaged, as mentally tough as I am emotionally stunted (in many ways). If you’ve ever been frustrated with me for my indecisiveness or my inability to learn life lessons the first time, then I promise you that there is NO other person on Earth who is more frustrated with me than I am! Thankfully, though, my mission has always been to improve myself a little more every day.
Part of improving me has been deciding who I truly am. I mean, I’ve always been Kelly, but many versions of Kelly have existed throughout my lifetime. Several decisions in my life have led me to becoming a different “me” than what I envisioned when I was younger. Every choice I made led me further and further from those empty promises I told myself back in high school. Back then, I was going to get my degree in accounting, get married as a virgin, and start a family with my perfect husband. (My dream job was actually to be a stay-at-home mom to as many children as I could bear!) Instead, I dropped out of college after my first semester, moved home and worked a few years in the hospitality industry. September 11, 2001 changed how people were travelling, so it wasn’t long before I enrolled at the University of Wisconsin – Stout, earned my bachelor’s degree in psychology and worked mainly in restaurants and retail.
Fast forward to today and I am just a little more than a year until my fortieth birthday with no husband and no children – a spinster, if you will. I recently came to an epiphany regarding my many contradicting traits: I had allowed the world to create me how it saw fit, what others saw fit for me, and I had failed ME – the younger, more naïve, happier me, from long ago.
Instead of working toward what I thought I wanted, I chased that illusive “love.” The one that we’re supposed to want, the one we thought we deserved. I had spent the 20 years since high school, stuck in an endless loop of bad relationships and sometimes long stretches of single-dom and promiscuity. Einstein himself could have used my entire love life as a textbook example of his definition of insanity! I was seeking something outside of myself and therefore outside of my control, instead of figuring out what I wanted, what I believe, who I really wanted to be, and what type of work would be most fulfilling to me and therefore make me happiest. What I failed to recognize (for far too many years) was that I only needed to learn how to love myself – the good, the bad, and everything in between.
Telling my story to others helps me to learn more about myself because I am able to put together the pieces of the puzzle – the lesson(s) I should’ve learned during the experience(s) – but my thick skull, stubbornness, and indecision interfered. Introspection, for me, is necessary to truly learn from my experiences. I would imagine it is crucial for nearly anyone looking to improve themselves, but my personal struggle is that I need to have it said aloud to me. I have begun speaking to myself audibly more often. I may look crazy to others, but that is none of my business. It is how the life skills actually sink in and stay. To make matters harder, my emotional maturity does not match my intelligence quotient, so I just do the best I can, playing the cards I was dealt.
This all brings me back to when I met Bertha. In the fall of 2008, I had re-enrolled at UW-Stout to pursue a Master of Science in Applied Psychology. I had also been working for a national brand men’s store since almost two years prior (that job where I was once extremely happy). I had planned my favorite type of vacation for my spring break that March: the solo road trip. I love to drive and I would love to eventually see every part of this continent and as much of the world as I am able. I thoroughly enjoy traveling alone and have made many memories by myself and for myself. That March, I had planned an epic ten-day trip from Wisconsin to the Grand Canyon in Arizona, to Dealey Plaza in Dallas (where President Kennedy met his untimely demise), then further south to Houston (literally for A basketball game, singular).
Somewhere along my nearly four-hour trek from Dallas to Houston, I noticed a sharp pain in my left eye. The weird thing was, I could only feel an electrical shock type of pain in my eye if I attempted to look too far into my peripheral vision on the left. I didn’t think much of it and simply adapted the manner in which I checked my blind spot, while also maintaining my position in my lane, and made a mental note to get it checked out on my next day off. I successfully found my hotel in downtown Houston, checked in and then walked to the stadium to see the Timberwolves play the Rockets. A friend from work and I had gone to several Timberwolves games already, thanks to our awesome employee perks at the time, so I was ecstatic to see them play at a venue I’d never before seen. Unfortunately the Timberwolves lived up to almost every Minnesota team’s reputation of causing only heartache for their fans, but hey, it was fun to see a new court and city!
After the game, I headed back to my hotel room to catch a few hours of sleep before I started the long venture north on I-35. In the morning, I loaded my things back into my vehicle and headed out of Houston. Now, I figured it should be simple enough to get back onto the freeway from where I stayed. I say I figured, because I thought it would be simple, but for some reason the map I had wasn’t matching what I was seeing in front of me. (I should add here that I am usually quite skilled in finding my way, even in places I’ve not visited before. One group of friends has called me a bloodhound before because I’m so good at not getting lost, and finding places that they still have no idea how I did. Neither do I, really, but it’s one of my gifts.) As I’m trying to navigate this foreign city and find the signs that match the exits I needed, I noticed my left eye had begun to hurt a little more consistently, but still the worst of it was when checking out my peripheral vision. After far too many wrong turns on too many wrong downtown streets, I finally found my I-35 north exit, cranked my stereo, and set the cruise control for the journey home. I made it as far as Clear Lake, Iowa before I checked in to the last hotel of my memorable trip with me, myself, and I.
My final day of the trip, a Sunday, was also my sister’s birthday, so I had purposely planned it as my shortest, easiest portion of the drive. I wanted to surprise her with the gifts I had collected for her and her family in my travels. I visited other family and friends and brought their souvenirs to them as well. I was scheduled to work the next day, so I had made it an early night. Coincidentally, I had Tuesday off, so I had scheduled an eye exam at the Lenscrafters near my work. Tuesday’s eye appointment led to a referral to see a specialist on Wednesday because they discovered a small tear in my left retina. The optician mentioned that it was easily fixed with a laser surgery, so I thought it would be a quick and simple fix and I’d be back to work that night.
Wednesday came and I saw the specialist, Dr. S, who examined the small perforation and discovered something else: my left eye had optic neuritis. I had never before heard that term and Dr. S explained that it meant that my optic nerve was enflamed, and would need to be treated by a neurologist before he could complete the laser surgery to repair my retina. I called my manager and informed him of my situation and then apologized, because after my 10-day vacation and only one day back to work, I had to use a couple more benefit days to consult the neurologist. I was confident that I would be fine with some medicine from the neurologist, some rest, a little laser surgery, and then right back to work Friday. Oh, how wrong I was!
My parents took me to my appointment that Thursday, in Minneapolis at Noran Neurological. I met with Dr. D, who informed me that optic neuritis was treated easily with corticosteroids (such as Prednisone), but that the occurrence of it demonstrated that I needed to be further tested to determine if I actually had Multiple Sclerosis. Optic neuritis, he explained, is a common symptom found in persons living with MS; he ordered an MRI scan of my brain and spinal cord as well as a lumbar puncture (more commonly known as a “spinal tap”). Both tests were performed that same day and I wish I could say they went off without any problems, but that’s just not how my luck ever goes.
The MRI was pretty simple. First, I dressed in scrubs and was instructed to remove any jewelry or other metal pieces. They put me in the giant claustrophobia-inducing tube where the excessively loud grinding sounds of the machine were only mildly quieter with the headphones they had provided. After what felt like three hours of lying still, they pulled me out from the machine and injected me with radioactive fluids and back I went into the noisy, uncomfortable box for a little shorter of a stretch (that still felt like an eternity).
After the MRI was completed, the technicians sent me to where they would perform my spinal tap. The doctor who performed this was not as patient as I would’ve liked, because I will forever stand by my initial thoughts, which were that the numbing agents had not yet taken full effect. He instructed me to stop squirming while he jammed a long skinny needle into my back, and I can assure you that this has still been THE most painful experience of my (not quite) 28 years thus far! How on earth do you remain still when you are certain you can feel every movement of that needle? I am convinced he should’ve waited a little longer, but at some point he was done collecting spinal fluid and my body was back to a normal state, no longer in that excruciating pain.
I was then instructed to go home and rest; they would call to schedule a follow-up appointment when they had more definitive answers based on my results of both tests. Among my instructions were to remain lying down on my bed or on the sofa for a few days until the small hole in my spine healed itself. The doctor (or nurse, I don’t remember well enough anymore) told me to do everything lying down like Cleopatra,including eat meals, or I would feel the worst headache of my life any time I was upright (sitting or standing). These are called ‘spinal headaches,’ which in the simplest terms means my spinal fluid would slowly leak out from the small needle-hole in my back, causing the nerves on the top of my head to stretch as my brain sank a little lower within my skull, since the spinal fluid was no longer keeping my brain in its place within my skull.
“Ouch” doesn’t even begin to describe that pain! It was miserable. I dreaded using the restroom because I had to walk to get there first, then (of course) was still upright to use the toilet, and finally I had to walk back to where I had been lying down! I missed two or three more days of work when we realized we’d have to go back to Abbott Northwestern hospital because that spinal headache didn’t go away on its own within 48 hours. Remember when I spoke about my “luck?” Well, I certainly didn’t feel very lucky that I was in that small percentage of people who needed a “blood patch” to fix the leaky hole in my back, but bad luck had been pretty standard at that point in my life. Dad drove my mom and I up to the Twin Cities to the hospital to get the blood patch done.
I wish that I would have known how quickly it could be repaired because I would have insisted on it a day earlier! Once we arrived in a room at Abbott Northwestern, an anesthesiologist arrived at my bedside, drew some blood from my arm and injected it into the small hole in my spine. Almost instantaneously, I sat up, free from spinal headache and as good as new! (To this day I hope I never again see the doctor who performed the lumbar puncture because I’m pretty sure he is my mortal enemy now. Hahaha…I kid, though. He was nice enough; I just never want to see him again.)
After all the chaos of the previous week was over, I returned to work while I waited for my follow-up appointment with Dr. D at Noran on April 7, when he informed me that I indeed, have multiple sclerosis. Those of you who have been there already with your own diagnosis, or those of you who already know this about me (or even those of you who are just great readers and can follow a story well enough to figure out where this is headed) know that this was my official introduction to Bertha.
Bertha is my MS. She hasn’t always had a name, either. In fact, her name came to me during an exacerbation near the end of 2019 because I was frustrated that I was at a loss for how to deal with the pain, and my anger and depression that had invaded my life, whether directly because of her or not.
I have found that by giving her a name and a humanlike identity, I felt more in control. I am fairly confident that anyone who has not dealt with me much probably looks as me as if I am insane, but I am perfectly fine with that because I have turned Bertha into something less significant than she had seemed for some of the first decade of tolerating her. So now when I clumsily drop pens and spill drinks, I laugh and call her a klutz. Or I get mad and yell profanities at her for causing me pain once again. By treating her as an evil twin, so to speak, it has allowed me to let go of the things I cannot control (Bertha) while also acknowledging how utterly awful I feel on my roughest, toughest days, and that it is not at all my fault– because it is her fault. Nobody would ever choose to have a diagnosis as intrusive as MS has been in my life – I would bet my life on it! I have said on numerous occasions that I personally wouldn’t even wish this disease on my worst enemy, because that is the honest-to-God truth.
I would never wish this level of pain on another human being, even on my crankiest day! That being said, I also recognize that I wouldn’t have been given this disorder if God didn’t think I could handle it. I am humbled to think that He trusts me enough to put my best foot forward and begin navigating this life with big, bad Bertha, even on the days when I haven’t believed I was strong enough for this battle. But over the last eleven years, I have come to realize many things about myself and have decided that Bertha simply will not win.
I will not let her. I am a warrior, and Bertha is my (weaker) adversary. Many of the MSers in the world will tell you that we consider ourselves “MS Warriors,” and I love this moniker, especially when you realize that my name actually means “warrior.” I like to think that my dad had some inkling of the hardships I would endure later in life when he chose my name, or at the very least that God placed my name on his heart because it fits me so perfectly well!
I am definitely much better at tolerating Bertha these days, because I have taken my power back. I only allow her so much attention before I once again emerge, the phoenix from the fire. Last year, 2019, has been my toughest year to-date, as I was incapable of performing my job for just over thirty weeks, split into two separate long stretches. Berth was determined to wreak havoc in my body, but I just as stubbornly fought her at every step. I am sure some of my doctors would tell me that I need to find that comfortable balance in life, but it will undoubtedly be the constant struggle for the remainder of my days. My stubbornness is the strongest trait within me and I believe that God and I are just getting started with this new method for dealing with Bertha. I’m going to fight her with everything I have in me, just watch.