Rebecca’s Health Report Vol 21, World MS Day Edition: In Which I Restart a Tradition in a Public Forum

Hi family,

In honor of World MS Day I’ve decided to send this report to a broader audience. I realize it’s been a while since I wrote one of these, and I’m sorry. There have been tiny victories and defeats over the last few years, but for the most part my health remains low grade shitty, hardly worthy of an email. Or blog.

My weeks before being stuck at home had a different rhythm, and self care was easier. On good mornings now, I stretch, get out of bed, and then head to the living room for 15 – 20 minutes of Pilates on my own before a sensible breakfast. It is equally (read: MORE) likely that I will spend 30 minutes scrolling on my phone before rolling out of bed, ignoring the yoga mat, plopping my tight glutes on a barstool, and ploughing through two blueberry scones. It takes such effort to be good, to take care of myself.  And, no matter how much I remind myself of the wonders a small bout of morning exercise does for my body and psyche, it is hard as hell to make it happen. My wonderful Pilates instructor Jeneva spends a half hour Facetiming with me on the weekend, so, if nothing else, I have that.

Me, on a “good” morning, trapped in my Pilates ring

I feel like I’m falling more these days. Maybe due to reduced core strength. Maybe because I’m not paying enough attention. My elbows are covered in little pink circles where I’ve caught myself on a wall. The lightest of skinnings. Post-fall my first thought used to be a quick calculation of when my next massage would be. Under current circumstances those calculations are pointless. I try to be happy for those who can finally get their hair cut  and colored again*, but I won’t be celebrating until massage studios are open. Massage never fixes things completely; it sure makes them feel better sooner, though.

I should also acknowledge that increased falls with Neal home are a mixed bag. On one hand, he’s always here to help me up. On the other hand, HE’S ALWAYS HERE. Sometimes a girl just wants to flop around awkwardly in private.

I was due for bladder Botox in April, but rules regarding what procedures are essential make it so that all my urologist can provide is an email saying “I am not quite sure when we are opening up to do Botox, but I have a list of people to call and will add you so we can get you scheduled ASAP.” So I try to curb my liquid intake and celebrate each trip to the bathroom as a chance to get in more steps.

Oh speaking of steps–thanks again for your Walk MS donations! I haven’t managed a full mile  since then, but  I try to do a half mile most days. It was pretty damn inspiring to realize I could do it. So hurrah for that.

What else? Oh, I  had a telehealth visit with my neurologist, Dr. A, whose phone manner is much better than her bedside one. (I still haven’t sorted out the paperwork with Johns  Hopkins, which is annoying but not worth my energy presently.) The chronic back pain that she shrugged off last fall is now worthy of her concern, so I take 100mg of Gabapentin 3 times a  day. And it  helps some! Fish oil and Biotin are back in the supplement pool at higher doses than before. (Sure, why not?) She also sent me for a brain and cervical spine MRI. No results yet, but I’ll keep you posted. My biannual bloodwork (required to keep me on Tysabri) will be completed next week when I go to Georgetown for neck Botox. Yes, neck Botox is fine but bladder isn’t. Ours not to reason why.

At work we have a Slack channel (Slack is like Facebook for work) called #covidsilverlinings, and here are mine:

  • No massages means no paying for massages, nor paying to be transported to and fro. And while I will strip down and get on that table THE MOMENT it’s possible, it’s good to know that my body does not shut down without that care.
  • Pilates at home is effective! And, again, doesn’t require transport. I prefer the apparatuses (apparati?), but perhaps I can do a combo of home and studio work moving forward.
  • Being home all the time has taught me that I’m a decent walker when I take smaller steps and use my rollator. Bonus: the rollator is handy for transporting snacks from room to room.

That’s all the news from DC. All my news, at least. Thanks for your support. I am so lucky to have you all!


P.S. Mail has been inconsistent of late, so I assume my MS Day presents are stuck at a post office somewhere on the east coast. Looking forward to their arrival!

*Believe me, I get it!

Lie Back and Think of England . . . Or Show Choir: In Which We Learn How to Survive An MRI

If my alarm goes off before 7am, there must be a damn good reason for it, preferably one that has something to do with traveling somewhere fun to eat wonderful things. In the case of last Tuesday, I rose at 6:08 to travel five miles across town for a brain MRI. Hardly fun or wonderful but a necessary twice-a-year ritual thanks to my current disease modifier, Tysabri.

Tuesday’s was my thirteenth MRI since 2010! (Hat tip to Google Calendar for that statistic.) I bet if you added up all of my MRIs since 2004, you’d find that I had logged a full day in the tube. It isn’t quite enough to fulfill Malcolm Gladwell’s 10,000 hour rule, but I daresay I’m pretty good at it.

MRIs begin with extensive questionnaires about the metal in your body. It is wise to take these questions seriously, because the M stands for Magnet(ic) — and you do *not* want to forget to mention (and remove!) a nipple ring before encountering a super strong magnet. (I was once in the waiting room with a mother and teenage daughter; the latter had *just* gotten an eyebrow ring and much drama ensued.) If your procedure involves contrast, as mine always does, there are also multiple forms to sign about understanding the risks, which are minimal for folks with normal kidneys.

Since I’m only wanted for my brain (sigh, just like high school), I get to keep my pants on (see previous parenthetical), removing my belt and wearing only a hospital gown on top. I addressed the toll gowns can take on your psyche in Diagnosis Part Two. If you’re a lady or a confident man, I highly recommend going for a pink gown if the option is offered. Pink will perk a person right up. Sadly, I was stuck in drab blue this time around. The dressing rooms at my MRI center are much like the dressing rooms at any department store, except instead of a door each enclosure has a curtain. This makes clothes changing the most stressful part of the procedure for me, since the only thing between me and falling into the hallway, bra akimbo, is fabric and my questionable core strength. My most recent visit was a success in the not-flashing-the-techs realm.

All 20+ MRIs I’ve gotten have been at the same place. The welcome I receive isn’t quite an enthusiastic, Cheers-worthy “Rebecca!” but it is warm and familiar (so much so that when I express dismay at having forgotten to bring phone for a photo for this very blog, the tech offers to use his phone and text me). Richard, who has been my tech on many occasions, fetches me from my dressing area with a new guy named Sergei, Richard kindly offering his arm. We cross the hall together, and I hop on the table without being told, making sure the wedge pillow that supports my legs is at just the right angle. MRIs’ accuracy depends on stillness, and comfort is key to stillness. If you twitch, there may need to be do-overs. Do-overs mean more time in the tube. No one wants that.

Knee pillow in place, I accept earplugs and lie back gingerly to place my head in its plastic enclosure. Richard offers a blanket, which I accept. (Comfort! And modesty! I’m braless in a chilly space — you can do the math.) I am asked an arm preference and offer up my left, which Sergei tries, unsuccessfully, to find a good vein in. It’s not contrast time yet, but they like to have everything ready so that they can simply inject the agent at halftime. My right arm is more cooperative. Saline is injected, and Richard says his usual spiel: “You may get a weird taste in your mouth or smell an unpleasant smell.” The smell is like rubbing alcohol, and I am always amazed and delighted that an injection can inspire the sensation of scent. Much about *my* body sucks, but bodies in general are cool!

All dressed up and no place to go.

Richard adds pads to each side of my head until I’m immobilized. The plastic grate comes down over my face. I think of Hannibal Lecter and Darth Vader even though awkward football player is more apt. I am handed my panic button, a small bulb on the end of a rubber tube to squeeze if I freak out. I wiggle a little to make sure I’m as snug as I can be given the circumstances. “What sort of music would you like?” Classical. “Is one blanket enough?” Yep. Let’s do this.

I slide into the machine with my eyes open. There is a mirror above my head that allows me to see into the control room where the techs sit. I can also see my toes wiggle, which helps orient me. The plastic wall of the machine is maybe six inches above me. It’s snug. If you suspect it might freak you out, for heaven’s sake, tell them you’re claustrophobic and take the drugs. My current drug-free tactic is the early morning appointment; my natural grogginess allows me to zone out, sort of like hitting the snooze bar repeatedly if your alarm were relentless patterns of eardrum-shattering sounds. Like that car alarm that cycles through a series of uniquely annoying noises but in a lower register. Classical music is piped into the room, then stops when Richard speaks to me through the PA system: “We’ll start with some tests, okay?” Sure! Ahnt-anht-anht-anht-chukka-chukka-chukka. It begins.

My godmother used to make up songs to the sounds of her MRIs, which I think is adorable but never worked for me. In the early days when I had to spend longer in the tube and had yet to discover the glory of the morning appointment, I used to do show choir routines in my head. Scans tend to last three to eight minutes, and trying to remember choreography to a Cole Porter medley I learned in 1992 was a great way to distract myself until the next break when I could wiggle, cough, and scratch my nose.

Four scans in, it’s halftime. I slide back out into the open air. A syringe is screwed into the catheter in my right arm, and the contrast is injected. The catheter is removed. Gauze is taped to the injection site. My arm is replaced under the blanket. I slide back in. Rinse and repeat.

An hour has passed when I emerge for good, bleary-eyed and eager to sit up. I am encouraged to exercise caution and do so. I hand over my earplugs, accept an arm, and head back to the dressing room to put on my well-person drag and face the rest of the day. Before I leave, I am handed a DVD containing images from the morning’s scans plus the ones from the fall for comparison. I’m going on three years without significant new lesions and hope that trend continues.

Before returning to the office, I treat myself to a bacon and egg sandwich in the same crappy little cafe where I processed my diagnosis 13 years ago. No Camels this time.    

Diagnosis, Part Two (Electric Boogaloo): In Which a Diagnosis *Is* Given (Spoiler: It’s MS!)

Special thanks to archivist David Wise for providing me with the primary source material at the end of this post. 
The months between my initial appointment with Dr. Van Damme and my diagnosis on April 23, 2004 are largely a blur. I believe I left his cramped, speculum-filled office with a referral to the cleverly-named Neurology Center, conveniently located on the 2100 block of K Street, where I worked. I was assigned to Dr. Wei, an unassuming gentleman who introduced me to the battery of neurological exams I have participated in biannually since then like some sort of frequent, unathletic Olympics. Touch your nose – touch this pen. Does this feel sharp? Stand on one foot (they don’t ask me to do that anymore). Push up with your elbows; don’t let me push down. What number do you see?
He also performed a very simple test – running a blunt, pointed instrument along the bottom of my foot – that I later learned was a sign that something was wrong with my central nervous system. Most people’s toes curl when this is done. My toes flex, making me Babinski positive.
Dr. Wei mentioned MS as a possibility but not the onlypossibility. I could have a vitamin B-12 deficiency! Or maybe something else? More testing was necessary – starting with MRIs of my brain, cervical spine (neck), and spine. I faced the MRI with dread. I didn’t ask for drugs since I’m not technically claustrophobic, and I was mostly a brave little toaster. Still, it was tough. Lying still for so long with all of that noise is never fun. Still the worst part for me is the changing room transformation. I have had a lot of MRIs in the past 13 years, and even if I go into the radiology center feeling great and looking fierce, the moment I put on that hospital gown and look in the mirror I feel like a sick person. I remember trying on the “I have a chronic illness” persona that day and finding it drab and ill-fitting. I’m pretty sure I made it through both MRI appointments – they’ll only allow you to spend so much time in the tube on a single day – without tears on site, but I’m positive I began crying the moment Neal picked me up and didn’t stop until we got home.
Dr. Wei brought me back in to review the results. There were lesions on my brain and spine that could mean MS, but he wanted to do more tests. In my frenzied reading I had learned that a spinal tap was sometimes called for and was beyond relieved to be spared that ordeal. Instead I was sent for two evoked response tests, which involved sticking a bunch of electrodes to my head. Once that was done, I watched a screen with a moving checkboard pattern on it, then wore headphones and listened to tones. Barring the mussing of my hair, these tests are the most pleasant (and trippiest) I’ve experienced.
Then came the waiting. It could have been as little as a week between the final tests and my second follow up, but it felt like YEARS. I still wasn’t sleeping great due to the arm pins and needles; add worries on top of that, and I was a mess. I read lots of articles online about MS, freaked out about what it meant for my long term future but especially the short term, which was certain to be filled with needles. NEEDLES I’D HAVE TO STICK INTO MYSELF! I talked endlessly about it to my nearest and dearest. I remember my father’s trying to encourage me with tales of the Scotts’ less dramatic neurological issues – “I bet there would be plenty of spots on my brain MRI!” he said.
Diagnosis day arrived, and I received the anticipated news. Anticipation did not soften the blow. I nodded numbly as I was told that MS was tough to diagnose with certainty but all signs pointed that way. I took the MS Society brochures I was given, as well as packets about my three injectable treatment options. Yes, I understood I should read them over and call when I’d made my choice. Thank you, Dr. Wei.
I went downstairs to the café on the main floor of the office building, bought a 20oz Coke, and sat on the patio, crying and smoking the Camel Lights I carried then for my ever-more-frequent moments of crisis. This was before I had a cell phone, so it was just me, my grief, and two delicious vices for my first minutes as a person with MS. After a couple of cigarettes, I wiped my eyes and went down the block to my awful job to tell my boss what happened and that I would be leaving for the day. First I wrote the following to nine friends and my immediate family:

        From:      “Rebecca L. Scott” <>
Sent:      Friday, April 23, 2004 10:21 AM

Subject:   results

Hello all,

If you’re receiving this message, then you are amongstthose who have been burdened with the knowledge of my recent medicaladventures. Although I will not likelyleave limbo completely for a while yet, this morningI did receivea “probable MS”diagnosis. Because it’s not the sort of diseaseyou can just do a blood test for, probable is about as certainas it gets in these earlystages.

I’m still processing everything, of course. The next step will be to take a look at the drug options my doctor gave me (for those of you who are medicallyinclined, I’ll give you the nameslater). They’reall in injectionform, which means I get to learn how to administer them to myself a daunting prospect but I’m sure I’ll cope. Once I pick a drug, they’llsend me a nurse to teach me what to do.

So that’s where we are. While I would’vepreferred to hear, “Youhave a B-12 deficiency,” I definitely feel better having a diagnosis even if it isn’t an especially pleasant one. Many thanks to all of you for your concern, offers of help, etc. It makes it a hell of a lot easierto bear knowingso many peopleare pulling for me.

I should get back to work so I can get out of here. I’m a littletoo teary to be usefultoday. Oh, one quick lighthearted note before I go my boss hugged me and said he thinks of me like a daughter. The hug was terrifying and followedby an awkward sort of touslinggesture. And given my knowledge of his daughters, I’m not sure being thought of as one is a compliment.