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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” <rebecca_scott@netzero.com>
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.

fondly,

 Rebecca
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Pity Party: In Which A Children’s Book Provides a Valuable Lesson

Something awful happened at work today. I have already blogged about its horrors (and, wow, are they horrible), so there’s no need to rehash. I kept my shit together (*rim shot*) enough to gather my things and uber home. Once there I threw myself a pity party featuring a long bath with a fancy Australian sachet I’ve been saving for nearly a year, two Cokes, and a lot of ugly crying to This Is Us, which is ridiculously emotionally manipulative and just what the doctor ordered today.

It’s been ages since this sort of thing happened to me, and I’m shaken. I’m also tired, angry, and frustrated. But I’m going to do my core workout, make dinner, and remember the message of Lily’s Purple Plastic Purse.

Today was a difficult day. Tomorrow will be better.
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I’m an Asshole, Too: In Which I Nibble On Some Crow

I recently found myself in the elevator with someone high up in the organization I work for. We don’t know each other, but we’ve exchanged pleasantries before. A hello, how are you, nice weather — office chat. That day was different, though, because he had a large, complicated sling with a padded wedge holding his arm at a specific angle off of his body. I felt it required acknowledgement but didn’t want to be so bold as to ask what happened. So what did I say?

“Well, that’s a bold new accessory!”

And as I did so, I realized I’m an asshole, too.

I don’t think I offended this gentleman or that I was out of line. I definitely was participating in the sort of jokey, vague comment that I complained about in my last post, though.

I try to greet the awkward/repeated comments of strangers/acquaintances regarding my scooter in the spirit in which they’re offered — a way of acknowledging my situation through friendly small talk. Within 24 hours of my last post a security guard said “I like your Mercedes!” and I replied with a breezy “Just three payments to go!” That’s harder to do when someone makes the same “I wanna go for a joy ride!” joke week after week, but perhaps I should try.

***

And while I have feathers in my mouth . . . 

Hidden disabilities are real and should be respected. It’s been ages since my disability was hidden. I bought a cane in 2010 for extra MS Walk support and have been using one regularly for the last six or so years. People might wonder what my disability is, but no one seeing me navigate even a short hallway on foot would mistake me for able-bodied. Lots of people with MS wear it more subtly than I. And while they may be able to cross a room gracefully, they also may suffer from terrible fatigue, pain, or a host of other issues that make handicap bathrooms and parking spaces helpful.

Outside of the MS world, there are many conditions from chronic fatigue syndrome to Fibromyalgia to bum knees that may require special accommodations. I am pretty quick to give the side eye to someone who uses handicapped facilities that isn’t up to my standard of perceived need. I’m a Judgy McJudgerson (on many more issues than just this), and it’s not one of my best qualities.

Bottom line? We should all try to be a little kinder and acknowledge that there is suffering that we cannot see.

(That said, I’m pretty sure Daily Toothbrusher just likes her privacy.)

***

And, finally, a wee bit of vindication.
This is what happens when a handicap entrance button is overused.

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You’re Probably an Asshole, But That’s Okay: In Which We Learn That Paying a Little Attention Can Make You a Better Person

A while back, Charlotte (my stepdaughter, for anyone who stumbled here via a means other than Facebook) posted something to Facebook about her annoyance with able people using the handicapped door opener. One of her friends took issue with this – “stop calling me lazy and who am I hurting?!” was the gist of his reply. I vowed to write an even-tempered, kind response but didn’t manage to pull together thoughts for a couple of weeks, at which point my posting something would have verged on creepy.

Luckily, there’s a blog for that! Today I will tackle a few of my pet peeves as they relate to life as a person with MS and how others (like you!) might modify their behavior to minimize frustrations to those less abled.

1.       Handicapped doors are not for you. They are marvelous things. Most doors on businesses are HEAVY, even for the able-bodied, so doors that open at the press of a button make my life much easier. They might make your life easier, too, but here’s the thing – each time you use that button, it is getting unnecessary wear and tear that could lead to its malfunctioning. Pushing a door opening button and having nothing happen is a sad affair. Also, if someone who really needs the button mechanism is behind you but not immediately behind you, she has to wait for the door to close fully before the door can open again. Got arms full of boxes? You get a free pass. Just feeling a little lazy at the end of the day? Nope. To the normal doors with you!

2.       Handicapped restroom stalls require good judgment. They even give me pause. At work, I consider the handicapped stall my domain, as I am one of two ladies with a mobility aid on my floor. Standing and sitting are not my strong points – doing so bare-assed over toilet water is especially dangerous. If it’s the only stall available, the handicapped restroom is fair game for the able-bodied. But if you just want a private sink for toothbrushing (I’m looking at you unnamed coworker)? Nope.
Now here’s where it gets complicated. Handicapped stalls are a must for folks confined to wheelchairs, obviously, but where do I fit in as a cane-user? Here’s my rule of thumb: unless my legs are crazy wobbly on a given day, I go to another stall in large public bathrooms. (Similarly, if you are on the verge of an accident and the handicapped stall is nearest, use it. Good judgment!)
If you are in a theater where there’s a special single handicapped bathroom on the main floor, for the love of all that is holy, please climb the stairs down to the basement and wait in the horrible long line, happy knowing that you are a good person with working legs.

3.       Look out for curb cuts, those little ramps from street to sidewalk, usually at corners. If you are not pushing a stroller, please keep curb cuts clear. One of my greatest fears in life is falling off a curb into traffic (also, slugs). The gentle(ish) slope of the curb cut lessens this fear. Plus, if I’m on my scooter or in a wheelchair, I really need them.
Please also be aware of curb cuts when driving. I have shaken my first at far too many cars and tour buses that are blocking my passage over the years.

4.       Don’t ask for a ride on my scooter. Yes, it looks like (and can be) a fun thing on which to take joy rides, but it is primarily a tool that has changed my life, affording me a little independence for things like grocery trips. I would trade it for the ability to walk a mile in a heartbeat.
Please don’t say, “Oh, I’m so tired! Can I borrow your scooter?” I know you mean no harm. I will smile and say, “Anytime!” But inside I am calling you an asshole. On a related note, do not ask if I “have a license for that thing” (addressed recently on Speechless, a charming sitcom that tackles disability issues brilliantly) or accuse me of speeding.

Note: all scooter rules are moot if we are drunk. You may have a ride then. Assuming I can still drive.

5.       Don’t express jealousy of my having a handicapped parking placard. Yes, it is nice to almost always have access to a spot close to the entrance. You know what else is nice? Not having a chronic illness.

6.       For the last time: YOU CANNOT BEDAZZLE MY CANE. The only thing worse than having to use a cane is having to use a tacky cane.

As a reward for all of this scolding, please enjoy this video of a man’s quest for a bagel. NYC is awful for folks with mobility issues, and this guy faces it all with humor and profanity, two of my favorite coping mechanisms. 

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On Not Panicking and Self Care: In Which We Learn the Worst Thing About Chronic Illness

Saturday evening I went through the week’s mail, finally opening a bill that I assumed must be the $126 my insurance company recently informed me I owed for a routine office visit because “a catheter was inserted by a doctor.” As we’ll discuss later, I am perfectly capable of inserting my own catheters (foreshadowing!), and I was already pissed (*rim shot*) that my doctor’s choice of specimen collection, which had already robbed me of some dignity, also would rob me of an extra $96.

I tore the envelope open, a suitable amount of outrage at the ready to share with my ever-patient spouse, Neal. And then I saw this:

That’s an outrage! If I were you I wouldn’t pay it!

This alarmingly high figure was not unfamiliar. I had seen it before, in January, when my health insurance was mysteriously discontinued for two weeks. My then-employer blamed the insurance company and vice versa. I never got to the bottom of who was to blame and decided not to pursue it, because I had been assured all previously-denied claims would be paid.

I calmly announced, “I’m not going to panic” to no one in particular as I read both sides of the bill. Repeatedly. I grabbed my insurance card so I could call and resolve the matter, but, of course, the office isn’t open on Saturdays. Nor is my doctor’s office. Luckily, I was not panicking. For 36 hours.

Cut to me under a fuzzy brown blanket ugly crying as ever-patient Neal rubs my foot (the only body part visible) and tells me things will be okay.

Look, I’m a smart girl. I know that this is bill is a mistake. The chances of my having to fork over $10k+ are slim to none. Three phone calls will likely resolve this matter. But sweet fancy Moses, do you have any idea how many of those calls I’ve made over the course of my illness? Currently I’m experiencing spasticity in my left calf that is seriously affecting my gait and my energy levels have been at record lows for weeks. Neither of those symptoms have caused me the stress and annoyance that this clerical error has, because the worst thing about chronic illness is the paperwork. I’m sure if I ever experience a bout of paralysis or blindness, I may reconsider this claim, but I’m sticking by it for now.

I firmly believe that allowing oneself to lean into the despair of one’s situation from time-to-time is healthy and a form of self care. Cry, rage, compose angry tweets, drink a little more than is responsible . . . whatever gets you through. I’m a big fan of calling my marvelous mother convinced that I’m not going to cry and then dissolving into a puddle of tears the moment I hear her voice. Once the emotions have been indulged, I recommend engaging in more pleasant self care. After I pulled myself together Saturday, I read some old journals, announced to Neal that I didn’t feel like cooking, and tucked in for take out pizza and a movie. On Sunday I got a massage and enjoyed an amazing dinner with amazing friends (and maybe drank a little more than was responsible).

By the time I called the insurance company last night, I was back to my usual (mostly) rational and (mostly) cheerful self. One call down, two to go . . .

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Oh Shit: In Which We Learn That Fecal Incontinence Will Not Kill You (No Matter How You May Wish for Death’s Sweet Release in the Moment)

As many of you know, Neal and I used to run a trivia night on Capitol Hill. Its original incarnation was at the Pour House, a Pittsburgh-themed bar that was a very doable half mile walk from our home. A dear friend was in town visiting, and I was thrilled to share my local celebrity status with her (oh how they used to cheer when Neal said, “Helping me, as always, is the lovely and talented Score Babe, Rebecca!”). We delighted our guest with music selections and trivia tailored to her interests. The three of us stuck around for an extra round of Yuengling after the game was done. A good time was had by all.

Initially.

There were blessings to count. 1) I was with two people who had proven their unconditional love for me many times over and would be nothing but kind about the incident for years to come. 2) No one else was around. 3)  We were a short walk away from a hot bath and a change of clothes.

There is no need to go into detail about the physical horrors of the experience. We are all familiar with excrement and its qualities. I hope you are not and never will be familiar with being an adult who has lost control of her bowels in a public place. For all of the physical unpleasantness, the mental toll is much, much worse. When the last, increasingly uncomfortable steps brought us to the house, I rushed straight to our downstairs half bath, locked myself in, and sobbed uncontrollably. Was this my life now? Was I going to live in constant fear of the next pants-shitting? Would I need to limit my diet to cheese and other binding agents to ensure this never, ever happened again?*

Pajamas were brought from upstairs; soiled clothes were bagged and put in the trash outside. My sweet husband was convinced we could save the jeans, but I was having none of it. My well-meaning house guest told me about the time the same thing happened to her when she was younger and had the stomach flu. In spite of the impulse to do so, I did not scream, “STOMACH FLU DOESN’T COUNT!!!” I was too demoralized to do much but sniffle and nod. When I eventually shared my experience with other close friends, they too were empathetic and a little tone deaf, sharing stories of drunken GI mishaps. Didn’t they understand? A drunk college kid shitting their pants is hilarious. A moderately tipsy young woman doing so is tragic.

The bad news: incontinence has visited me multiple times since that Tuesday a decade ago, and it sucks every time. The good news: I have a great gastroenterologist with a sense of humor, which is even more valuable  than a funny name. He taught me about Runner’s Diarrhea (apparently it’s not just for runners anymore!) and strategies for avoiding such embarrassments. While I’m not sure that this particular hardship that hasn’t killed me has made me stronger, it definitely has made me more resilient, and resilience is key to surviving chronic illness. So I’ve got that going for me.
 

*This joke did NOT occur to me until many years later. Tragedy + time = comedy.

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Diagnosis, Part One: In Which No Diagnosis Is Given)

Picture it: Washington, DC (or, more accurately, Arlington, VA), 2004. Neal and I are getting groceries at Shopper’s Food Warehouse for the Superbowl Party we’ll have that night. My stomach is acting funny, so I make repeated trips to their sad, stinky little bathroom. Sitting under the fluorescent light I noticed my feet were asleep. Both of them. Full pins and needles. Weird, right? But I stood up fine and walked okay, so I got on with buying avocados and chicken wings. Football snacks do not make themselves.

janet-jackson-2004
Wardrobes were not the only things malfunctioning that year!

In the weeks that followed, the pins and needles persisted, subsided some, and then moved to my thighs, torso, and eventually settled in my arms and hands. Neal was a little worried, but I shrugged it off. In high school I’d had a numb-ish forearm for months that was attributed to a pinched nerve in my elbow. In 2002 I had spasms that distorted the right side of my face and were alarming to see (sorry, Neal!), but they didn’t affect my life much and also disappeared on their own. Surely this bizarre traveling carnival of mild discomfort would leave of its own accord, too.

The arms bothered me more than my condition’s previous residences. This was in the dark days of my career, when I was an executive assistant at a government relations consulting firm, typing long, poorly written memos from my boss with whom I shared few political stances and even fewer ethical ones. My typing speed was lightning fast (thanks, college all-nighters!), but the semi-numbness made my hands clumsy. Worse, it was impossible to find a comfortable position for sleep. I self-medicated with Benadryl and other OTC sleep aids for a week or two to no avail before calling the doctor.

Since I was 27 and invincible, I did not have a GP. I’d always been dedicated to taking care of my ladybits, but the rest of my body? Who has the time! Thus, I found myself scanning my insurance company’s listings and settling on Dr. Van Damme. Who wouldn’t go to Dr. Van Damme? (Sidenote: there are undoubtedly better ways of picking doctors, but I often go for humor. My current gynecology practice was chosen the moment I learned Dr. Rebecca Bush was a partner. If that isn’t destiny, I don’t know what is.)

Alas, Dr. Van Damme exuded none of the strength and confidence of the movie star sharing his surname. His waiting room was dark and tiny; the exam room was a jumbled mess of papers and boxes with blunt, bold labels (the words “PLASTIC VAGINAL SPECULUMS” haunt me to this day). His bedside manner was that of an unfunny Woody Allen. He heard my tale, took my vitals, and shrugged, suggesting I see a neurologist. I left frustrated that relief wasn’t in the near future yet relieved that I’d never have to visit him again.

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Let’s Do This

This blog exists for two reasons: to encourage me to flex my writing muscles and to share a little about what life MS is like . . . for me, at least. I’ll document fun procedures like bladder Botox injections, share some of my Strategies for Success (Neal’s coinage, which is accurate but somewhat gag-worthy), review various stores’ mobility scooters, and bitch just a little.

A word of warning: there will be candor. If you’d rather think of me as a classy lady who’d never discuss her own bodily functions, please do not follow this blog. (Also, clearly we haven’t met.) If you can take the occasional overshare, do join me on this journey. 
The coolest borrowed scooter ever – at Zealandia in Wellington, New Zealand.