The internet is a weird place. Sometimes it’s fascinating/troubling weird (hi, WTF Evolution). Sometimes it’s magical weird, like when Twitter connects you to a like-minded, MS-having Brit who says you have a good sense of humor (for an American, at least) and then you get to appear on his YouTube series. Thank you, Dom, for taking a chance on this Yank. It was tremendous fun.
MS-havers, make sure to follow @themsguide on Twitter for the latest news on MS.
Every day, every hour really, another photo in my feeds. Someone grinning with their sleeve rolled up, showing off their Band-Aid or certificate or, in the cool states at least, an “I got vaccinated” sticker. It’s like early voting but instead of doing an inner ”Ba-booooo!” (victory cry coined by my high school class that, 25 years later, I’ve yet to shake), my emotional roller coaster begins.
Your parents are vaccinated! Yay! Mine too. What a relief!
Wait, where do they live? Maryland? Damn it! That’s so close.
What the f… oh, right, she has an underlying condition. Good for her.
School teacher. Great. Right on, right on.
How old *is* he?
For you see, after waiting and wondering whether I could get vaccinated at all, the MS Society released their verdict in early February: all MSers not only could but should get the vaccine. FANTASTIC. Where do I sign up? Oh, DC is starting with folks 65+ in at-risk neighborhoods? That seems fair. I’ll just sign up for the alerts. And wait. And wait. Each text notification raised and then dashed my hopes until I stopped reading them. Then one day Neal told me that DC had announced plans to open vaccines to people with lowered immune systems. Glory hallelujah!
I’m mildly immunosuppressed due to my disease modifying therapy (Ocrevus). It’s not the scariest of immunosuppressions, but it is cause for extra concern in these virulent times. So I’ve been cautious and am now hella eager to get some COVID antibodies up in here (up in here).
“You want the vaccine, Rebecca, and it’s available in DC… why are you even writing about this?” you may be thinking.
While I’m cleared to get the vaccine, the timing is tricky*. I can either complete my shots at least four weeks before my infusion or get my first jab twelve weeks after. March 1 was the first day I was eligible to even pursue an appointment. I’m due to be infused the first week of April. So again I wait.
We all know social media is a double edged sword. It makes us feel both connected and isolated. It allows us to celebrate friends’ victories… and hate them a little for their good fortune. And/or hate ourselves for being too lazy to do whatever they’ve done. Chronic illness intensifies this. It can be a struggle not to lean in to bitterness, especially when scrolling. Oh, you ran five miles today? Amazing! My phone says I managed 572 steps *and* I only fell once. Golly, those homemade croissants look delicious. My hands, which used to do amazing things in the kitchen, can barely manage a successful pancake flip. You dumbed into a COVID vaccination ahead of schedule? My dodgy immune system and I must wait until July.
Logically I know your getting the vaccine has no effect on me except to give me a pang of jealousy followed by guilt for begrudging anyone, especially someone I love, protection against a nasty virus. Similarly, your family dance party, your delectable eclairs, and your hiking getaway are things to be celebrated, but it’s often a toss-up whether I’ll grin or deepen the crease between my eyebrows. When I go into a guilt spiral, I remember the title of a terrific album by talented young (So very young! Damn them.) rockers The Regrettes– Feel Your Feelings Fool! All of these feelings are valid–joy, frustration, anger, jealousy, guilt, hunger (it always sneaks in), and they deserve to be felt.
It’s also good to keep a little perspective simultaneously. Things are shitty, and I have a lot be thankful for. Everyone I know personally is healthy. I haven’t seen my parents in over a year, but they’re awaiting me in my childhood home when travel feels safe. It feels like there is real cause for hope in the US (thanks, grown ups in charge). Plus, I’m trapped in a condo with a handsome and charming man.
I’m also the #1 Walk MS fundraiser in the DC area, which brings me lots of joy. Want to share a serotonin hit with me? Click here.
*So tricky that when I asked my neurologist what to do, she said, “Check with the MS Society.” I found this profoundly annoying. If you were part of an MS practice wouldn’t you release a statement or video summarizing recommendations for each medication? I was delighted to receive a video from my MS center last week… until watching it and discovering that it said, you guessed it, “Check with the MS Society!” Further reason to support this marvelous organization.
1981: I am four and “helping” my dad in the back yard. “Helping” means playing Tarzan with the stakes and ties holding up his tomato plants. Shortly after he says “Stop that, Rebecca!” for the fifth time, I take one more leap/swing and fall, hitting the back of my head on a log. My only memory of the aftermath is my mother and sisters coming home to find me standing on a kitchen chair while Dad tried to comb my hair and assess the damage. Stitch count: four.
1982: I am five and a budding gymnast. I use the couch arm and the adjacent director’s chair to play parallel bars, supporting myself on my hands and letting my legs swing free. I have been told not to do this. Many times. But I continue and am surprised to be impaled on a sewing needle my mother has left stuck in the arm of the couch. Doctors try and fail to remove the needle, so an orthopedic surgeon is called to finish the job. The wound is closed, and my wrist and arm are wrapped and splinted. I am treated to McDonald’s at the end of the ordeal. Stitch count: two.
1991. I am fourteen, and it is early in freshman year. I take out the trash, yelping when I get near the door to the carport. A piece of glass punctures the trash bag and my right wrist. I watch this one get stitched and think it’s pretty cool. I get the side eye at school and realize what a bandaged wrist implies. Tasteless jokes about suicide ensue. My mother still apologizes when this incident comes up, and to this day I shout “There is glass in the trash!” repeatedly when there is glass in the trash. Stitch count: four.
2007. I am thirty. It is the morning of Thanksgiving. Friends are coming over, and I am working my way through the prep spreadsheet I’ve meticulously created. Cutting an onion with a freshly sharpened knife I slice through my left index finger. We apply pressure. We elevate. The bleeding continues. I insist I will be fine. There are tears. Neal offers to drive me to the ER, but I refuse. Thanksgiving must go on! I accept a ride to the Metro station and take the subway to GW, elevating my finger the whole way. A handsome physician’s assistant stitches me up and I am back home in under two hours. A Thanksgiving miracle! Neal and Char do a fine job cooking without me. Stitch count: four.
2009. I am thirty-two and en route to visit my college roommate. I leave work at the Folger early and might be rushing more than I should along the uneven sidewalks between work and the train station. I catch my toe on a brick and land on my face. I am not entirely sure what I’ve injured, but I know I’m very bloody. A passing construction worker hands me a fairly clean towel, which I press to my nose. Other passerby stop. I sit on the sidewalk until an ambulance arrives and four clean cut, well-dressed doctors emerge, circle me, and lift me inside. Perhaps due to their attractiveness, I perk up a little and stop crying long enough to explain where I was headed, that I have MS, etc. I ask if they always dress so well when picking women up off the street, flirting just a little. They explain that they’re physicians at the Hart Senate Building(!), just down the road. I am driven the half block then wheeled through security and into their office, blissfully unaware of what a horrorshow my face is. I sit in a comfy chair. The doctors clean me up a little then ask if I’d like to see myself. “Sure!” I say. A mirror is brought and I see a bruised nose, a gashed forehead, and a severely split lip. I realize this is the face that was flirting moments ago. Idiot! I keep it together until I reach Neal at his office and sob as I try to tell him what happened. One of the doctors takes the phone and explains. Neal retrieves me and takes me to GW’s ER where, after six hours, I get stitches in my forehead and lip. The lip flushing and Novacaine is excruciating. Recovery is slow and gross, but I am eternally grateful to PA Amy for her beautiful work. When I feel up to it I deliver a thank you note and cookies to Dr. Harder and the other Senate doctors. Dr. Harder calls to follow up. We do not start a torrid affair. Stitch count: twenty.
2014. I am thirty-seven. I trip in the basement hallway of the Folger and bang my forehead on a door frame. First aid is kindly administered by a member of the fabulous security staff, which is always so good to me. Stitches seem inevitable. An ambulance is called in spite of my asking to simply taxi or Uber. I feel ridiculous being carried out on a stretcher for a mere brow abrasion, but I smile through it. Inside the ambulance I wonder why the Doppler effect never kicks in. God, that siren is so loud and relentless! Oh right. I send Neal an email entitled “Oops I did it again” en route, and he meets me at the ER in spite of my telling him not to. The ambulance arrival gets me through triage more quickly than usual. I leave with stitches along my left eyebrow and a shiner. Stitch count: five.
2020. “I am forty-two, no forty-three,” I tell the physician who runs to my side. I have just finished six hours in the Cancer Institute of Washington Hospital Center getting my first infusion of Ocrevus, my new MS drug. I am groggy from the meds and from sitting so long but have assured the nurse who wheeled me to the lobby that I wil be fine to make it to the Uber. Three steps away from the car I fall to my left, scraping the side of my face on a cement planter and landing chin-first on the sidewalk. My Uber driver and a hospital guard scoop me up, deaf to my cries of “Please let me sit a minute!” (Obviously they haven’t read my blog about falling.) I teeter between them while being peppered with questions by the guard, an indignant aid (“I keep telling them not to abandon people post treatment when they’re too weak to walk!”), and the aforementioned physician, who examines my chin, declares stitches necessary, and fetches gauze to stuff into my bloody face mask. I am put in a wheelchair and pushed to the ER to check in and then wait. And wait. And wait. Foolishly I text Neal, who drives to the hospital, neither of us remembering that Covid restrictions mean he cannot sit with me. He runs in with Coke and water and says he’ll be right outside. We text sparingly as my phone slowly dies. I read much of To All the Boys I’ve Loved Before as well as a good chunk of a David Rakoff collection. After three hours I am brought to a private room where my vitals are taken for the thirtieth time (thanks to the earlier infusion). I am examined. I am told I need a CT scan to ensure my jaw isn’t fractured, which will delay things further. Boo! But I am offered drugs. Hurrah! The drugs arrive an hour later, and I rejoice in Tylenol-3 and water (my bottle long ago emptied). The doctor returns, saying he might as well stitch me up while I await the scan, and the moment I lie back, a nurse arrives to take me down the hall. I wait. I am scanned. I am stitched at last. I am given a gauze goatee. I call Neal from the lobby and collapse into our car, twelve hours after he dropped me off. Stitch count: five.
Forty-four stitches in nearly forty-four years of life. And what have I learned? 1. Listen to my parents. If they say not to do something, there’s likely a good reason. 2. Walk slowly. (Neal scoffed at the idea that I have learned this. I’m trying!) 3. Ask for help. 4. A Kindle full of good books can make anything bearable. 5. Facial wounds do not enhance one’s flirting game.
“Throughout September, join us in celebrating Can Do Month by sharing a photo of how YOU thrive with MS!”
This line greeted me in my daily junk email aggregator, and rather than gagging (my usual response to being encouraged to focus on all the things I can do with MS), I felt sad. For these days I am not thriving. These days I have just enough energy for a jaunt to physical therapy, a few hours’ work, and two episodes of Buffy. These days it is not uncommon for Neal to make all three of our meals for us as I’m relegated to a bar stool to read or play with my phone. If he’s preparing dinner, one eye is on my task while the other looks up compulsively to see what’s happening on the other side of the counter.
While these nights spare me the expenditure of physical energy, my mental energy triples as I worry about a) whether he’s doing it right and b) when to speak up. Cutting onions or other vegetables unsafely (i.e., not with their flat side down)? Let it go. Trying to boil water on medium heat (which, to be fair, is pretty damn hot on our range but will slow the process)? I’ll likely just make an excuse to pass by the stove and bump it up a little. Subbing whole wheat flour in cookies when we’ve run out of AP? Oh hells no. Initially I calmly (mostly calmly) read recipes aloud, micromanaging each step, but, as I try to let go more, I try to let him do his own thing, checking in only occasionally.
While I was on a call last week, Neal made a great semi-improvised quiche. Mushrooms, asparagus, spinach, THREE kinds of cheese. Really delicious. And I was happy as I ate it . . . and yet so very sad.
From the moment our cohabitation began, I was the primary household cook, ensuring we ate really good dinners nightly with a least one proper breakfast on the weekend. Sure, Neal would jump in from time to time to make burgers or do some of the chopping, but the kitchen was my domain. I received marriage proposals while passing plates of homemade mozzarella sticks and olives in blankets at our ridiculously crowded house parties. I had a goddamn cooking show! Even as the MS slowed me down, I almost always made dinner. Sure I did it from a rolling stool and begrudgingly accepted help with heavy pans and fiddly preparations, but I still did most of the work.
Lately due to some combination of MS, mega antibiotics, and Covid malaise I have trouble mustering up the energy to make a cup of tea. Our I cook/you clean arrangement has become you cook and clean while I sit still cycling through gratitude, frustration, anger, and dismay. When dinner isn’t quite up to my standards, I regret that I couldn’t do it myself. When it’s great, I feel threatened. I’m ashamed to admit it, but it’s true.
I recently told Neal I’m pretty sure that one third of the sentences I say to him start with the words “Would you please.” Each year, each month adds to the snowball of needs that is me, and, if I lose my status as kitchen goddess, what am I contributing to our household barring the occasional (okay, frequent) pun and a pretty face? I know marriage is about ups and downs, sickness and health, etc. But I’m the dummy who put promises to feed the family in her vows. TWICE.
MS (/Covid/antibiotics/2020) is shaking another part of my identity, so I’m practicing my own kitchen serenity prayer–pitching in when I can, having the grace to step away when I can’t, and listening to Neal when I lack the wisdom to know the difference. I made us an excellent breakfast of toast, avocado, scrambled eggs, and smoked salmon this morning. I’ll let him handle dinner tonight.
Two-ish weeks ago I received this note from my always-tactful neurologist: “Your TB test is coming back positive. Before we move forward with Ocrevus, I would like for you to see infectious diseases to make sure you are safe as we make these transitions.”
“TUBERCULOSIS?! What fresh hell is this?!” I asked myself.
“Ocre-who-now?” You may be asking yourself.
Let me explain. My current medication, Tysabri, which has kept my immune cells from crossing the blood-brain barrier thus keeping me lesion-free for lo these seven years comes with a nasty risk called PML. Take it away, Cleveland Clinic:
Progressive multifocal leukoencephalopathy (PML) is a disease of the white matter of the brain, caused by a virus infection that targets cells that make myelin — the material that insulates nerve cells (neurons). Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses.
Part of the Tysabri protocol is getting tested for the JC virus every six months, and my levels of antibodies have slowly crept up to concerning levels. Add to that the fact that PML risk goes up the longer one is on Tysabri: time for a new medication.
My options were Mayzent, a daily pill that traps white blood cells in the lymph nodes so they can’t attack my precious myelin, and Ocrevus, a biannual infusion that targets a specific B cell that “plays a key role in the disease.” Choosing medications is stressful and difficult, especially when all you have to go on are the cheerfully vague drug-company-produced brochures and indecipherable research abstracts. Much as I cling to my AP Bio test score as proof that I am science smart (thanks, Mrs. Howerton!), when it comes to my own health I don’t like to risk it. So I called in my own personal science guy, Dr. Dad (who spent his career in the Cell and Molecular Biology Department at the Medical College of Georgia), and he suggested I contact a family friend who is a neurologist with MS–and a great guy to boot.
That conversation turned my attention away from Mayzent, which had tempted me with its siren song of “just one pill a day” and being touted as the only drug approved for secondary progressive MS (which I have), because who wants their white blood cells held back during a pandemic?! Family friend reminded me that targeting one specific type of B cell is less immunocompromising and that Ocrevus has a longer track record. Ocrevus it is!
[Brief sidebar. How lucky am I to be reasonably smart and to have outside resources to call upon?! In these moments I worry about my fellow MS-havers that don’t have the luxuries of time to ponder these choices, super smart people to guide them, and only moderately addled brains.]
I told my doctor my choice, and we came up with a plan: bloodwork, one last dose of Tysabri, an MRI four weeks after that, and then my first infusion four weeks later. I’d be newly medicated by fall!
Enter the positive TB test. A week after receiving it, I enjoyed a telehealth visit with infectious disease specialists Dr. Z and Dr. B, who asked a battery of questions and observed “You don’t look like you have TB.” They also explained that I likely have latent TB, which means I’m having an immune response without any symptoms. If that’s the case, I have three months of antibiotics ahead of me. If it’s more serious, the treatment stretches to nine months. My future depended on a chest x-ray.
So I got the chest x-ray. And, much like with each MRI, I simultaneously know that the results aren’t hugely consequential (the details of what’s going on inside me won’t have a huge impact on my life) and have a low hum of anxiety as I await the dispatch from my innards.
This morning’s 9am telehealth call in which I was to get results has been postponed because the radiologist’s report wasn’t ready. I am annoyed. I am calm-ish. I am eager to know just how many months of potential yeast infections lie ahead. I am wearing a bold lip (a favorite coping mechanism) and hoping for the best.
UPDATE: My lungs are clear! I have three months of copious antibiotics ahead of me as well as orange pee (and potentially orange sweat and tears?!) and NO ALCOHOL. As a particularly humorous friend put it, “Sorry about your consumption. At least you have more in common with Keats now.”
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.
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!
When social distancing first kicked in I was on a call with my usually globetrottting but newly homebound colleagues who were bemoaning the fact that they were sitting all day. A particularly sensitive one of these lovely humans wrote soon after to check in, worried about how those comments might land on someone that has no choice but to sit most of the day. I gave it some thought and realized that, while I did briefly want to sing “Cry Me a River,” I was primarily interested in the fact that the whole world was getting a taste of what it’s like to have MS.
You cancel plans you were looking forward to because you can’t leave the house.
Sure, there aren’t government decrees insisting that people with MS stay indoors, but, believe me, my body is harsher than any mayor. I don’t leave the house because I can’t. Literally. Due to fatigue. Due to my legs being little bitches. Due to it being 80+ degrees. Due to depression. You get the picture.
You spend hours wondering is this cough due to COVID . . . or is it just a cough?
MS symptoms are a Pupu Plattter of weirdness. Spasticity, gait issues, bladder/bowel problems, and sexual dysfunction are all clearly MS-related for me. Fatigue? MS likely plays a big role but so does not exercising enough and eating poorly. And my short term memory issues that scare the hell out of me? That could be MS or just the fact that I don’t focus well or pay enough attention.
You don’t know how long this will last.
MS, like a diamond, is forever, but its individual symptoms’ lengths vary. I had double vision ten years ago that seriously affected my day-to-day to life and had to stumble through without an end–or two–in sight. It was mercifully finite. Lower back tension and pain that settled in two and a half years ago have been my constant companions ever since. Now that I’ve reached the progressive stage of illness, I have to make peace with the fact that things aren’t going to improve much. Good news: you don’t have this problem.
You feel isolated from friends and family.
I am #blessed that this is not an issue for me. All of my friends and family have been crazy supportive since my first pre-diagnosis tingle. If MS Twitter* is to be believed, this is not the norm.
You find new ways of doing things.
You’re moving your weekly coffee date online, adding ad hoc teacher duties to your routine, and cutting yourself and your family some slack. I’m sitting down (or, UGH, asking for help) to cook dinner, working Pilates into my schedule, and cutting myself some slack. Your new ways of doing things are constantly evolving as your circumstances change and you figure out what works. Mine, too.
You are on a roller coaster of emotions.
Some days what works is lying on the floor crying, And that’s okay, so long as you get up eventually. Some days you are a goddamned rock star with one hand ready to unmute yourself for a meaningful contribution to a Zoom meeting while the other is cutting Shrinky Dinks.** Some days are hopeful. Some days are not. But you (and I) press on because there is far more good in the world than shit, even in these particularly shitty times.
Being both a nostalgia whore and a planner, I adore the change from one year to the next. New Year’s Eve as an event ceased to be fun when close friends moved too far away for quietly drunken nights in together. Now I immerse myself in reflection instead. I scroll through photos on my phone. I sort through the basket filled with cards received and Playbills from shows seen. And I think about what I’ve done and what I hope to do.
In my reflection, I realized I have learned some things that might be useful to folks with chronic illness–and even a few tips for you healthy people.
1. Go easy on yourself.
You may have noticed that I don’t blog regularly (hi, Patrick!). I started this post New Year’s Eve and have thought “Damn it, Rebecca! Just finish it already!” repeatedly over the month. When I can fit in only one Pilates session a week, I think “Damn it, Rebecca! Even for someone with MS, you’re a lazy blob of humanity!” Too tired to finish dinner prep? “Damn it, Rebecca! If you’d planned better, you could have done this without help!” There are kernels of truth in each of these statements of self-abuse, but focusing on them neither helps me exercise nor gets dinner on the table. So I’m leaving self-damning behind and doing my best to accept my limitations without discouraging notes from my internal peanut gallery.
2. Don’t apologize.
Okay, I don’t mean NEVER apologize. I didn’t become a jerk in 2019. Apologies have their place, but that place does not need to be a permanent residency on my lips. If I move awkwardly through a crowded room, I smile and say “excuse me.” If I step on someone’s foot in the process, I apologize. I would never expect someone else with a disability to say “Sorry!” to me, so why on earth should I expect it of myself?
3. Ask for what you need.
I’ve spent a lot of time grumbling about being placed in the back of planes in spite of having declared a disability and requested assistance getting from gate to gate. Should that trigger a “hey, give this lady an aisle seat near the front of the aircraft” notification in the system? Yes! But we aren’t there yet. Airlines have numbers you can call to ensure your needs are met. You may have to call regular customer service first to get that number. Once you have it, save it in your phone and use it.
On a more quotidian note, I exhibit fierce independence usually seen only in toddlers determined to pour orange juice from big jugs into their tiny cups. I want to do everything MYSELF, even at the risk of my safety. After one too many burned hands and sloshed waters, I have humbled myself to bravely ask strangers (without apology!) to carry things to my table for me at restaurants. And they’re happy to do it.
4. Find and embrace things that make life easier.
Perhaps the biggest revelation of 2019 was my discovery of True & Co. bras, many of which have no clasps! Plus, they’re pretty, flattering (no uniboob, a usual risk with this style), and comfortable–even for those suffering from the dreaded MS Hug. Being able to put on a bra on my own is the smallest of victories, but eliminating little frustrations gives me a greater chance of making it through the day happy.
5. Make peace with your body.
Years ago my massage therapist Laura suggested I ask my legs what they need. Although I have yet to get a clear answer from any of my body parts, I have changed the way I talk to them. (Sensing a pattern? A+!) Uncooperative legs used to get an audible “Fuck you legs! Pull it together!” Now it’s much more of a calm “You’ve got this. You are strong, and you can do it if you go slowly.” I often feel ridiculous hearing myself utter this sort of positive self-talk, but I’ve realized that taking an adversarial relationship to my body–and, for that matter, my disease–does not help. I’m not sure that kindness makes me stronger. It does make me feel slightly less shitty, though, and we could all use more of that.
My beloved neurologist recently moved to Florida. How did I love him? I shall count the ways. I loved his quietly avuncular nature. I loved that appointments with him lasted a full hour, leaving plenty of room for “oh yes! I’ve been meaning to ask . . . ” queries that never made it to the list I always brought with me. I loved his one-two punch of experience and openness to new treatments. I loved that he took an interest in my life beyond my disease and gave me small glimpses into his. I especially loved that he sent me to the wonderful Dr. B, who calms my head tremors with Botox. And, most importantly, I loved that changed my DMT (disease-modifying therapy) to something that has prevented new brain lesions for six years.
Each time I have changed neurologists the results have been good. The kind and quiet Dr. W passed me on to Dr. C, whose fondness for Shakespeare gave us an entryway to rapport, making it easier to discuss excretory mishaps and other concerns. I left him for the recently departed (from DC) Dr. M in the name of getting more specialized care. His warmth and good humor were welcome bonuses.
So when Dr. M announced he was leaving, I was crestfallen but cautiously optimistic. Perhaps a new neurologist would bring new ideas. Unconventional approaches. Maybe even a prescription for the massages I invest thousands of dollars in each year. This could be great!
I went into my first appointment with Dr. A like I do most nervousness-inspiring situations, with a big smile and a tendency to talk even more than usual. I wanted her to like me, to see I’m not the average patient. I am good natured and funny! I know WebMD isn’t a real doctor! I understand science! (Sort of. My AP Bio exam score 25 years ago may have given me overblown confidence in this realm,)
I was greeted by the blankest face I’ve ever seen. Not a great start, but I could deal with this. I modulated my manic tendencies, directing my good cheer at the three med students to my left who seemed to need it. In our half hour together, the only flicker of emotion that crossed Dr. A’s face was repeated eye rolls when the students’ responses to her questions disappointed her. Corrections were delivered in a condescending tone. My heart broke for them . . . and for me.
We spoke about the need for an MRI and bloodwork. About how decreasing the frequency of my infusions is wise since the complications (which include DEATH, by the way) grow more likely the longer I’m on the drug.
“Should I maybe try another drug now? I hadn’t realized my risk went up with time.”
“It’s an option.”
Ooooookay. Now to my list of questions
With a grin to the medical students, “Sorry, you get more than you bargain for with me in the office!” Back to the doctor,
“I’m finding orgasms especially elusive these days.”
“Yeah, unfortunately there’s no female Viagra yet.”
“And if there were insurance wouldn’t cover it! Or let you get some internet doctor to prescribe it!” I laughed.
“Talk to your urologist.”
“I’ve noticed that my voice is froggier than it has been.”
“It’s hard to describe . . . it isn’t as strong as it was . . . it’s sort of creaky?”
“Do you mean how it’s kind of sing-song?”
“Well, no. But now I’m self-conscious about how I’m talking.”
“That’s not MS.”
I felt embarrassed, dismissed, and foolish. I barely got through the rest of my list.
The physical exam was performed by the med students, deemed worthy of Dr. A’s eyerolls yet entrusted to try their skills on me all by themselves with her interrupting only occasionally to say things like “What do you notice about her gait? What causes that?” They did a fine job, but I couldn’t help but wonder if their assessments would accurately represent my progress. Maybe these benchmarks don’t matter, especially when one is as far along as I am? I was too discouraged to put up a fight.
In typical form, I kept my shit together long enough to exit only to fall apart in my Lyft home. How could I go back to someone that belittles med students in front of patients? And, worse, who addresses my concerns without compassion? I understand that you may not be an orgasm whisperer and that my vocal issues might not be caused by MS, but I definitely need a flicker of a smile when you tell me these things. My inner voice sing-songed my distress, dismay, and despair all the way home.
It’s now a month later, and I have an exit plan. With the best neurology department in the US just an hour away, it seems foolish not to give it a try. Plus, I had the good fortune to meet a charming doctor who works there at an event I attended recently. Here’s hoping we’re as compatible in the office as we were over dinner.