Two months ago, a knot developed in my right lower back, just above my glutes. There it has stayed in spite of massages, heating pads, and stretching. Bending over both hurts and is a bit dangerous, so I’ve stopped doing it. Dropped things remain dropped until Neal retrieves them.
Portrait of the artist after getting her own breakfast plate.
I am a mess.
There is shit all over my house. Each room has two to four items on the floor — discarded clothes, a rogue noodle, an eyebrow comb, a tampon that leapt from its cabinet like a story from the “It happened to me!” section of YM magazine, etc. As I type, I wear a bra attached by a single hook (which took four attempts). I pulled my hoodie on backwards initially, leaving me briefly blind and disoriented.
My legs ache. It’s a soft ache, humming along my IT bands and pulsing quietly in my calves and ass. I’m no stranger to MS-related discomfort, but I’m not used to hurting. Walking is awkwarder than usual with the added bonus that sometimes the aforementioned knot will shout “WHAT ABOUT ME!” inspiring a wince and a need to brace myself on whatever is nearby.
Do you know that I started a new job at the beginning of October? I work from home *and* part-time. It’s magical, freeing me to both make and attend daytime appointments without worrying about nearby cubicle dwellers wondering why I disappear for hours or keep whispering about Botox injections into my phone. This is nice since I have made FIFTEEN calls over the past two months trying to get approval for bladder Botox. I recently was told we’re “very close.”
A disadvantage to working from home is realizing just how horrible the stairs in your charming row house are as you haul your uncooperative body up and down them throughout the day.
An advantage to working from home is randomly bursting into tears without scrutiny, which I have done frequently of late.
I am in a trough, friends; it’s a sort of mini-depression inspired by circumstance. I have at least ten ideas about how to improve my lot, from meditating to eating less meat to alternating cardio and strength training to reading more. What do I do instead? Play gin rummy on my phone while listening to podcasts.
Please remember that image next time you think of me as an inspiration. Sometimes I’m strong and brave. These days I’m more likely collapsed on the couch kicking myself for being undercut with a matching Ace.
P.S. I edited this the following day with a properly fastened bra. Perhaps things are looking up?
I have many things to tell you, dear reader, but we’ll start with an anecdote from today and see if I can still do this writing thing.
Fall is finally here, and I am delighted. Temperatures in the 60s mean a more mobile, energetic Rebecca. I had lunch with a friend today, and, emboldened by the cool air, I walked 2/3 of a block to CVS afterward to retrieve five prescriptions. (Five! That’s not the point of this story, but jeezy creezy that’s a lot of drugs.) I don’t know if it was because I’d been sitting a long time beforehand or what, but my gait was the same step-draaaaaag-step-draaaaag that made me think “I feel you, man” when watching the Mummy move across the screen during Monster Squad.
See ya later, Band-Aid Breath!
I briefly considered buying a “President Evil: Four Years of Hell” t-shirt from the street vendor thirty feet from my destination in hopes of briefly sitting in his folding chair, but I soldiered on, mummying my way into the store and to the prescription counter. When I got there, two people were in line and another, older woman was occupying the sole chair in the handicapped waiting area. As I swayed near the foot health supplies, I saw that the woman had summoned a pharmacist to our side of the counter to offer his thoughts on the very products I was on the verge of collapsing into. “Please. Vould you look at these toes?” she said, REMOVING HER BOOTS. I averted my eyes and focused on staying upright.
At last another pharmacist arrived at the register, and it was my turn at the counter. The podiatry consultation continued to my right as I collected my purchases in a collapsible bag, which is marvelously portable but its soft straps make getting them on my shoulder nigh impossible. Keeping them there? Ha. As I fumbled with the bag, the pharmacist asked if I’d like a flu shot. Why yes! Yes, I would. Go down to the other counter? Sure. Step-draaaag-step-draaaag, don’t drop the bag. (My new cheer!) Bend at the waist and fill out these forms? No problem. I’ll just lean on my elbows while I sign here. Oh, and here, too? Awesome.
“It will be twenty minutes. Is that okay?” “Absolutely. If I can sit.” Shoeless Joanna was still in the handi-chair, so the cashier gave up her stool for me. I was thrilled to have a seat, but hoisting myself onto it after an extended period of standing was tough. Once I got up there, my seated companion notice me and my cane. “Oh, vould you like this seat?”
Folks, it goes on. I had to get up AGAIN to fill out more flu shot paperwork during which time an able-bodied someone sat on the stool, so I returned to the newly-abandoned chair. Foot lady disappeared only to reappear with two pints of ice cream and a Metro Weekly she desperately wanted to give away.
I finally got my damned flu shot and cannot sufficiently thank the woman who came to where I was seated to administer it. Feeling victorious, I tried to stand, bracing myself on the arms of the chair and promptly being pulled back down. Twice. Because my bag, which I had at last successfully pulled onto my shoulder, was resting on the arm of a chair. A lady in line offered help. I cheerly declined and slunk out of the store to climb into the awaiting Uber. (And I mean climb–it was an SUV.)
Even amid the colorful population at our local CVS, I felt like a complete mess. Some days my body does not feel like my own. Man, this is one of those days.
As I discussed in my World MS Day Video, I’m a big fan of throwing things at the wall until something sticks when it comes to improving my physical condition. If a treatment is safe, reasonably priced, and promises not to be too painful, chances are I’ll give it a try. I love it when friends send me articles about new MS-related drugs or procedures. I cannot be bothered to keep up with every MS-related development. I have recipes to make and tv shows to watch, dammit! Information is good, and it’s nice to be thought of. A friend got me to try acupuncture, which wasn’t my jam but was definitely worth pursuing. A friend, who also has an auto-immune disease, recommended cryotherapy after trying it herself. It sounds a little bonkers, but I may give it a shot (especially since I have a coupon). Advice from friends is easy to take because I know it comes from a loving place. And because my friends are not preachy know-it-alls. Yesterday at work, I told a colleague that my recent fall was the impetus for our new kitchen first aid kit. He immediately replied, “You know what you need to do. You need to seal up that gut! I’m telling you, look at the GAPS diet. Cut the carbs. It’s all leaky gut!” I smiled and said, “Well, I’m working on lowering my sugar intake for now.” “Yes, sugar is bad! But the carbs . . . ” I have heard this speech before. Every time I smile. Feign interest. Thank him for his thoughts. I know his need to share this information comes from a kind place, a desire to share what has worked for him . . . so why do I find this conversation so frustrating? A few reasons. First, we are not friends. A friend would know that the day I give up carbs will be the day cryotherapy is offered in hell. Also, his tone is awful – this is what you need to do. I don’t mind being presented with an alternative therapy, but phrasing it as a suggestion rather than a foregone conclusion goes a long way. Finally, we’ve done this dance before. If I haven’t cartwheeled to his office shouting about the wonders of bovine colostrum by now, perhaps it’s time to let it go.
This is an “empathy card” from Emily McDowell. You should buy her stuff. It’s awesome.
A different and yet same-ish encounter happens every twenty or so Uber/Lyft ride. The driver will look in the rearview mirror and say, “What is wrong with your leg?” I explain that I have Multiple Sclerosis. And then the fun begins. “I have an aunt who had Multiple Sclerosis, but she had faith and prayed. And the family prayed. Now she is well. You must pray!” “Jesus will take care of you! You have to pray! And He will care for you!” “You know, scripture says . . . ” I smile. Thank them for their kindness. Exit the car carefully.
I know people say these things (Everything happens for a reason; God will not give you more than you can handle; Jesus take the wheel — just kidding about the last one) because they believe them and believe they will comfort the listener. And I imagine many listeners are indeed comforted. But if, like me, you’re one negative news report from making the transition from agnostic to atheist, these interactions are awkward at best.
I am happy to accept strangers’ (and friends’!) prayers, blessings, and even wacky treatment suggestions. I do so with an open heart. Just please don’t tell me what I should do with my body — or my spirit.
More from Emily McDowell. Seriously, her cards are the best.
I have not gone gentle into disability. Each assistive concession, from buying my first cane to installing grab bars in the shower, was agreed to only after heated discussion, gnashing of teeth, and tears. Neal has cajoled me into the acceptance of things that make my life better at home, and we’ll talk more about them later. Today I’ll tell you about my journey from silent sufferer to squeaky wheel at work.
When I first walked up the white marble steps of the Folger Shakespeare Library, a beautiful, old, totally not handicapped-friendly building, I was an able-bodied 28-year-old. As the years went on, those stairs became more treacherous, especially when slick with rain. There was nothing to be done about them, though, so I either walked verrrrry slowly or entered through the rear of the building on wet or weak days.
Bathrooms were a different story. I worked in the basement where a men’s room with a single stall was between my office and the two stall women’s room. Having my bladder give up between these two pit stops occurred a few times before I finally wrote something akin to the following to the HR manager.
Hi there! Among the many gifts MS has bestowed upon me is a less than reliable bladder. Having to walk all the way to the ladies’ room is sometimes a hardship, and I wonder if maybe the men’s room could be converted to unisex. Thanks for your help.
Shortly thereafter I got a reply saying that this was indeed a reasonable accommodation and that she would work on an announcement and ordering a new sign. Easy peasy.
A = office * B = men’s room * C = women’s room * P! = you get it
When I moved to government work, I foolishly assumed that the office would be accessible. The government WROTE the Americans with Disabilities Act, after all! How could they not be friendly to the plight of the less mobile?
In so very many ways.
I won’t go into the challenges of entering either of the museum buildings from a wheeled device nor the shitty signage for the ramps and elevators that do exist. Not now, at least. I work in a modern office building with (hurrah!) a button operated door to enter from the sidewalk. The concierges are wonderfully helpful (see this post for proof) and take care of calling the elevator for me. Once on the correct floor, though, the problems began. The office could be entered by two sets of beautiful, ridiculously heavy glass doors. Heavy like, throw your entire body weight into pulling it open and then quickly wedge a shoulder against it so it doesn’t close while you recover from the strain of opening it heavy. Pushing through was easier but still a challenge. The break room doors were identical with the added bonus that one would usually pass through them with hot coffee or a week’s worth of snacks in one’s hands. Even strapping middle-aged (they don’t make ’em young here, y’all) men would see me throwing myself against these doors and say, “They are awfully heavy, aren’t they?”
Then there was the issue of the bathroom. In order to reach the women’s room I had to take 82 steps, pass through one set of the aforementioned glass doors, AND get my clumsy-ass hands to fit a key into a lock, turn that key, and then remove it. Come watch me do that on my best day when I have no pressing needs, and I assure you it will not be pretty. Doing it with a straining bladder (or worse)? Tragic.
So, barely a month into the new job, I talked to someone in HR about my concerns, and within two weeks an email went out about collecting everyone’s bathroom keys. The office was abuzz with excitement about that inconvenience being removed. I gave myself a tiny internal high five for making everyone’s lives better. One issue down, one to go.
A month and a half passed, and in November I was told that the glass doors would be adjusted so they required no more than five pounds of force to open (the ADA standard for interior doors).
Shortly after Christmas, I inquired about the status and was told we were “waiting on a part.”
In early March, the pantry doors were adjusted at last. There were some growing pains — near injuries thanks to people pushing/pulling too hard, which was a little hilarious to be honest — but, again, people were pleased.
In late April, still awaiting action on the entry doors, I reached out to the EEO coordinator to check in, saying,“I’m not the only disabled person on the floor presently – we have someone with a walking stick, someone on crutches, and two folks with slings.”
On May 19, almost eight months to the day from my initial email to the HR manager, the entry doors were adjusted. And there was much rejoicing. On my part, at least.
I realize this hasn’t been the most engaging post, but there is an important message. If you need help, advocate for yourself. If you’re lucky enough to have an EEO office, start there; if not, HR should be a good bet. If you’re among those not yet needy, keep your eye out for how your workplace (or any place) might be unfriendly to gimps like me and speak up if you think adjustments should be made.
Squeak your ass off until necessary change finally happens.
This morning I rose promptly at 7 instead of asking Alexa to perform all of her tricks — news, Jeopardy!, jokes — as I usually do to delay facing the day. I showered last night to speed my morning routine in the name of arriving at my infusion center at 8am, thus minimizing the amount of time I have to make up at the end of the day now that I am out of paid leave. #newjobproblems
I’m back to the infusion center I like. It’s a part of Arthritis and Rheumatism Associates, which ensures I think of Uncle Wiggily every four weeks. I go in, fill out a form about my abilities/sense of well-being (today I’m a six on the zero to ten/best to worst scale), and then settle in for 90 minutes of screen time and the drip, drip, drip of the drug that’s helped my disease steady for the past three and a half years.
Today’s cast of patients was familiar at first — two young women receiving RA meds and an older lady in a wheelchair whose condition I was unsure of. Usually if folks take a pre-infusion dose of Benadryl, it’s a good bet that it’s RA, but some skip it. I’ve run into only two fellow MS-havers in my years of infusions. This morning brought a brand new experience. A mother and child of eight, I’m guessing, came into the infusion room together. I initially assumed that mom had brought the kid due to lack of child care, but then I noticed the sobbing. “I’m sorry. This isn’t our favorite day,” the mom told the nurses.
This girl was terrified, clutching to her face a stuffed sheep with a silky underbelly as she climbed onto the orange-y tan vinyl infusion chair next to mine. Her mom spoke quietly: Look at me. Breathe. It’s okay to be scared. You can hold my hand. There would be quiet for a moment, and then the stuttered inhale followed by a squeaky moan and nose wipe on that poor sheep. Those are the sounds of trying to be brave but knowing you’re failing. In a futile gesture toward privacy, the mom pulled the curtains I’ve never seen anyone use around the chair. A wonderful nurse came over, telling stories of other children she’s worked with, some who even learned to put in their own IVs! One was later prom queen! “I’ll make you a deal: if you stay very, very still, then I’ll be very, very quick.”
I’m an empathetic soul, so my eyes welled up on my side of the curtain. I can’t be that close to palpable fear and sadness without it creeping into me. Poor kid! I thought. I remember being terrified of blood tests! It was so hard to sit still at that age — imagine doing it knowing there’s a needle in your arm! And then my thoughts took a turn . . . Why must I wait, smiling and patient, while the nurse moves the needle in my arm, trying to hit a vein? Why can’t I sob publicly at the injustice of getting chosen in this cosmic game of Duck-Duck-Goose? Why do I have to go to work and pretend that everything is fine even on days when I am scared out of my wits that I will never be able to make a full meal without help again (more on this later), when my energy is completely sapped by heat, when I can’t seem to walk three steps without tripping?
Sometimes I just want someone to wipe away my tears and promise to take me to ice cream later.
I often whine about working in a corporate office building. After years in a beautiful library sharing an office space with two colleagues, sitting in a cubicle farm with an outward-facing monitor is a hardship. Every now and again there’s a bonus to traditional office life. Like today, when the building managers threw an ice cream social. I went downstairs at 2 to collect my share, a scoop of toffee crunch in a sugar cone cup. What a novel presentation! I gripped my cane with my left hand, holding the cone-cup as gingerly as possible as I made my way to the toppings table. One step. Two steps. Crunch! My poor motor skills caused a wobble followed by an overcompensating grasp to steady things, leading to a “Hulk smash!” moment. Half of the cone-cup crumbled to the floor as I cradled the remaining cone bits and ice cream in my hands. A colleague called for a regular bowl, but, alas, they had run out. Another colleague rushed over napkins, on which we placed a fresh cone-bowl, in which I placed my slightly mangled dessert. The ice cream lady apologized repeatedly as if she had somehow caused the near calamity. I slunk back to the toppings table for hot fudge.
None of these toppings were offered, BTW.
I live to eat and drink, but eating and drinking now comes with risk. Cutting meat at a nice dinner often results in silverware clattering down to the plate . . . or, worse, the floor. The hand-hand coordination of bread buttering is daunting. A full glass of any beverage is a hazard to all within a three foot radius. I’ll be damned if I’m going to stop eating steak or start eating my bread unbuttered, though. I suffer these small embarrassments with a polite apology and a smile and let life (and the meal) go on.
Neal and I have always enjoyed live music, but we have stepped up our concert game recently to make up for the fact that we aren’t vacationing this summer. This is the first in a series of posts about our live music adventures.
FedEx Field – After much deliberation, Neal decided that he could not let longtime favorite U2 come to the DMV (playing The Joshua Tree, no less) without being there. Being a dutiful wife, I agreed to join him. My only other visit to FedEx Field was for a football game back when I was able-bodied enough to walk into the stadium, and still the press of drunken fans and ensuing chaos then left me in tears. You’d think that would prepare me for the ordeal to come. (Spoiler: it did not.)
Everything about FedEx Field is a hassle starting with figuring out how/where to park. After several false starts, we were waved into the main lot and ended up quite close to the stadium. The entrance for folks on wheels was not one of the four closest entrances, however, and we had to ask three people before getting a certain answer about where to go. Once we got our elevator pass wrist bands and entered a lift, I foolishly breathed a sigh of relief.
FedEx Field does not allow its patrons to buy accessible seating ahead of time. The Washington football team’s website states:
Please note that accessible seating and parking is limited, so please arrive early to ensure availability. . . Accessible seating is available on all levels at FedExField. Fans in need of accessible seating should visit Guest Services, located on every level inside the stadium at Gates A and E, on the day of the game.
So, if like Neal and me, you have full time jobs and are thwarted by traffic, causing you to arrive as the Lumineers are Hey-Ho-ing their way through the opening act, you may be SOL. We kept our chins up, though, and found our way to the Guest Services line, which had about eight people in groups of two or three ahead of us. There was one wheelchair-bound guest in line with us, as well as a gentleman on a knee scooter, but mostly it was drunk, angry men in ill-fitting polo shirts taking up the time of the three stadium employees at the window, only one of which had access to a device capable of seat searching and ticket printing. So we stood/sat (I was in my wheelchair) as patiently as possible, neither kicking nor shouting at the numerous assholes that, in their hurry to get to the beer kiosk, stepped over my feet without so much as an excuse me. 30 minutes passed without any progress being made. A drunk bro from the back of the line pushed past us and was met with polite objections. “I’m not cutting! I’m going to yell at these people!” he replied. When I pointed out that yelling was not going to get us through the line any faster, he said, “What, are you just going to do nothing?!” Neal, my hero, said, “Sir I understand you’re upset, but I hope you aren’t yelling at my wife,” and the bro retreated.
After an apparent eternity, we reached the front of the line and were given two seats on an upper level. Before going there, we took advantage of the handicapped-only bathrooms nearby, both of which had lines of able-but-lazy-bodies outside. A sweet smile got me to the front of the line.
With empty bladders and tickets in hand, we felt newly optimistic. Another elevator took us up a level, and, with a little assistance from the inept but well-meaning FedEx ushers, we found our newly-assigned section . . . which could only be reached via stairs. We returned to the ushers, who pulled a frazzled, fresh faced ginger from Guest Services. He was all apologies as he grabbed our tickets and jogged back to his computer. He returned within 10 minutes with handwritten tickets. “This is the last accessible seat in the house. If someone else is there, please come get me.” We proceeded to our new new seats, and – glory hallelujah! – found an open spot for a wheelchair as well as an empty seat next to it. A huge sigh of relief was breathed. A beer was procured. The moment was documented (see below). The concert began!
And then three tipsy ladies showed up, puzzled that Neal was occupying one of their seats. He got up, but they remained distressed, clearly upset that they had separated this nice man from his wheelchair-bound companion. One leaned in, shouting, “Is your boyfriend okay?!” I proceeded to type a reassuring message on my phone about the situation and held it up to the face of the woman closest to me. She seemed to relax.
It was less than ideal to enjoy a concert with Neal standing behind me, but our “seats” were outstanding and I think he enjoyed having room to dance. The ladies next to us were adorable hot messes (the audience was full of sloppy drunks — I guess folks are out of practice in middle age), all of whom wanted to know my name, hug me, and say how much they enjoyed sitting by me. This is a weird side effect of the wheelchair: people get extra friendly in a way that borders on patronizing. I try to take it in the spirit in which it’s offered.
Was it worth the hassle to see a legendary band? I’m unconvinced, but the concert made Neal awfully happy — and it was nice to share that with him (albeit through the occasional shoulder touch and backwards glance). I am done with FedEx Field, though. Until the End of the World.
Shortly after my tiny goiter was rediscovered, I went to the gynecologist for my annual ladybits check. A week later, Dr. Safran called to say that my pap smear had come back abnormal, which wasn’t necessarily cause for alarm. Because it was my second abnormal smear in as many years, he wanted to take a closer look. Literally. So we scheduled a colposcopy, which is essentially an extra invasive and aggressive pap smear involving a speculum, a specialized microscope, a vinegar solution (I shit you not), and a biopsy instrument. The vinegar helps “highlight areas of suspicious cells” (thanks Mayo Clinic), which are then sampled and sent off to the lab. Pre-procedure, the mild-mannered Dr. Safran sighed and said, “I’m sorry. Everything I do is so uncomfortable.” “For you or for me?!” I asked, knowing the answer. The procedure itself was indeed uncomfortable, as was recovery. The worst of it was having something orange-ish, papery, and alien emerge from my body a couple of days afterward. I panicked then did what any sensible modern woman would do – took a photo and emailed it to my doctor, who calmly replied, “Oh, that’s just the material we use to staunch the bleeding.” Oh. Is that all?
HOW DO YOU NOT WARN A PERSON WHEN STUFFING STRANGELY COLORED THINGS INTO HER PARTS?! HOW?!
In less than a week, Dr. Safran called to tell me the samples exhibited moderate dysplasia, which is abnormal, possible pre-cancerous growth. Ack! The “pre” was comforting, but “cancerous?!” No one wants to hear that. Dr. Safran said we could either cut out the offending bits or go for a full hysterectomy given my age (ack again!) and history of fibroids. I spent a week or so weighing the options and discovering that multiple friends had undergone a LEEP (Loop Electrosurgical Excision Procedure) with great success. Much as bidding adieu to tampons forever appealed, I ultimately decided to decline major surgery.
I met with the surgeon, Dr. O’Brien, who looked Doogie Howser young on first glance – this is a tough thing about getting older; I constantly feel as if I’m living in one of those adorable commercials where small children are dressed as doctors, lawyers, etc. My latent ageism aside, Dr. O’Brien clearly knew her stuff and agreed that the simpler procedure was best. We scheduled an appointment in early June. I asked work for the recommended three days off for recovery.
While doctor O’Brien’s youth was alarming, I did appreciate her sparkly shoes.
The surgery was scheduled for 8:30am, which meant a 6:30 arrival and a 5:30 wake up call. I was instructed not to apply any lotions or make up to my body. At 5:30, I’m lucky to apply clothes to my body successfully, so this was not a hardship. Neal and I drove across town to the tony Sibley hospital, and, my heavens, I get what the fuss is about! Sure, navigating the place was a pain in the ass, but being seated in a quiet, well-appointed waiting room where the only screens silently announce patient progress and the magazines are interesting (and current!) was a treat. We checked in at the desk, handing over my advance directive along with the other paperwork. Logically I knew major complications from minor ladybit surgery were unlikely, but I hadn’t had major sedation since I got my wisdom teeth out in ’91 and was a little freaked out.
Eventually we were taken to prep, where I changed into a hospital gown and the coziest free safety socks I’ve ever been given. I was informed that I was welcome to change the channel on the TV in the room but was comforted by the steady stream of relaxing nature images it already delivered (butterflies were an obvious choice, moose less so). I was seen by a stream of charming nurses, all of whom seemed to ask the same questions. My favorite of the bunch asked about pain. I replied, “Well, I have a minor headache, but that’s likely due to not eating or drinking anything this morning.” She smiled, looked at Neal, and said, “Isn’t she pleasant?! She is so pleasant!” Then she looked at me to say, “The way you responded – it’s like you’re a sort of storyteller.” I shudder to think of the BS medical professionals must have to deal with that makes my bleary-eyed banter delightful by comparison.
I was hooked up to an IV. The forgettable anesthesiologist popped by to say hi. I was given a very sexy hairnet. It was showtime.
The operating room was bright and shiny and felt like overkill for such a simple procedure. I recall thinking everyone in the space was delightful as we chatted about how great the first appointment of the day is. I also was sliding into lala land, so it’s entirely possible they were all jerks. I think I made it through two breaths in the mask before conking out.
When I awoke I was thrilled not to be dead and annoyed not to still be sleeping (as a friend who recently had surgery said to me afterward, “You see why Michael Jackson got hooked on that stuff!”). I perked up when I was brought ginger ale and crackers. Neal joined me. When deemed suitably stable and awake I got dressed and went home for three days’ rest.
Last week I visited Dr. O’Brien, who informed me that the cells were indeed CIN2, the margins were clear, and my cervix looks healthy. Crisis averted. Another medical adventure logged.
When first diagnosed with MS, I comforted myself with thoughts like “At least it isn’t cancer!” So I tucked my hypochondria away into a memory box, certain I wouldn’t need it now that I’d been assigned my disease. Then the MS Society’s mediocrely written but informative magazine, Momentum, showed up on my doorstep with headlines like “MS and . . . Managing Two Chronic Illnesses.” Say what?! What kind of a bullshit world do we live in? One that can dole out multiple heavy physical burdens at once, it seems. I’m pleased to report that presently I’m holding steady with a single illness, but I have just wrapped up ten weeks of queries, biopsies, and procedures confirming that.
I saw my GP at end of March. She noticed, as she* did six years ago, a lump on my thyroid. This prompted an ultrasound, which showed the lump had grown one centimeter. Thus it was time for a needle biopsy (AKA fine needle aspiration or FNA). What fun! I had done this dance back in 2011, so I was reasonably calm about it — both in terms of the likelihood that everything was benign and the anticipated discomfort. As I emailed to my family after the first go round, “The local anesthesia burned like crazy, but it meant the extractions were painless.”
Imagine my delight when the pathologist entered the 10’x10′ biopsy room and said, “We don’t bother with anesthesia anymore. It often creates a lump that makes the biopsy more difficult.” Cool cool cool. I can do this. The doctor, a fellow, and a guy doing a swap from NIH** crowded around the exam table. NIH held a tiny cold pack to my neck, the fellow looked on, and the doctor prepared the needle, talking about how thin my neck is. Thin neck = tiny needles. Win. The lack of anesthesia meant each needle hurt, but each stick was fairly quick and burn-free. After the third aspiration, the anticipated question came, “Would you mind if the fellow did the next one?” I said, “That’s fine! I know whenever I’m at a teaching hospital getting poked by amateurs part of the deal. Plus, I think it’s important.” Did I sound like a kiss-ass? Sure! But I meant it. “Oh, I was going to wait until the end of this to tell you, but I’m going to say it now — you are the best patient! You’re so easy-going.”
It took five sticks in all. Unsurprisingly the fellow’s was the clumsiest of the lot, but he made a noble effort. After each sample, the pathologist put some cells on a slide, stained them, and took a look to make sure she was getting what she needed. Before I left, my AP bio instincts kicked in, and, emboldened by my status as “the best patient,” I asked to look in the microscope. The pathologist gave me a brief tour of the cells on the slide, pointing out signs that my growth (which, fun fact, is technically a freaking goiter) was merely inflammation and nothing malignant.
A week later my GP called to confirm just that, so I guess I’m off the hook thyroid-wise . . . for another six years.
*My GYN was the first to notice the lump. When I told a friend, she laughed and said, “Through your pap smear?!” I have the best squad.
** All of my caregivers were different nationalities, which seemed ripe for a joke (“an Indian, a Pakistani, and a Russian walk into an exam room”), but, alas I couldn’t muster it. Also, that’s racist.
“Everyone has a favorite!” says this panda, my biopsy companion.
I realize this an odd accompanying photo, but the other option was a goiter. No one wants to see that.
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