4.16.2018

When You Should Tell Your Date About Your Diagnosis

Part II of Ask Me Anything About MS

My next question from my "Ask Me Anything" series, comes from

Joe, who wants to know: 

When is the right time (if any) to tell someone you are dating that you have MS? First date? Second? The honeymoon?

Answer:

This is a tough one. Modern day dating is hard enough, but dating when you have a chronic illness like multiple sclerosis (MS), adds a whole new layer of anxiety to the process.  

If like Joe, you're wondering if you should keep MS a secret as long as possible, you're in luck, because technically MS can’t be confirmed, like 100%, without a brain autopsy, so, you could actually sail through the honeymoon and just wait until you’re a dead ghost to disclose your diagnosis. Let’s put a pin in that for a sec. For those who are inclined to a more open approach, there are a number of things to consider. 

Normally, this is the part where I say, don’t take my advice, ask your doctor, but doctors find partners because, well, they’re doctors. That’s usually enough to close the deal. Nonetheless, I feel compelled to remind you that I’m just a blogger with a MacBook. You don’t have to believe everything I say. 

Now that that’s out of the way, I can tell you that I am smugly married, and didn’t even have to bamboozle The Banker to the altar with that whole let's see what the coroner says routine. He was eyes-open aware of my MS long before we tied the knot. Better still, he knew he was getting a good deal. We both were. 

But the complicated truth about relationships and multiple sclerosis is that for some, MS is too much. For as many couples who have successfully navigated a partnership where chronic illness is involved, there are at least as many who have crashed and burned, or failed to launch in the first place. Okay, I made that statistic up, but it feels right, and I already told you this isn’t a scientific journal. I did however, do some research. 

After a difficult divorce, my friend Carrie was dipping her suspiciously numb toe back into the dating pool. After years of sketchy symptoms, Carrie finally received a diagnosis of MS while she'd been seeing someone for a couple of months. When she told him her news, he told her she had “too much on her plate to be dating”, which Carrie knew was code for “I’m not into sharing my plates”, and that was the end of that. 

Shocking, right? 

Of course not. For whatever reason (stigma, family pressure, fear, lack of understanding, lack of imagination), MS can be a deal-breaker, and if you find yourself up against this mindset in the dating world, don't waste your time. MS is tough. MS is not for everyone. Move on. 

My Ride-or-Die Brooklyn Bestie.

The good news is, there are people who can roll with MS; and those are the best people. Not because they’re heroes or some other bullshit, but maybe they’re a little more open-minded, a little less afraid, a little more willing to say yes. They’re the people who realize that nobody gets out of this life alive; might as well enjoy the ride. 

Knowing the lid to your pot is out there doesn't make disclosing this kind of intel any easier. But I'm here for you. 


Like, do you want me to tell them for you? That costs extra. 

Here are my top free tips for telling your future lover you have an incurable disease:

Buy some time 
Dating is about tricking the person you want to have sex with into thinking you’re perfect, and then slowly revealing your many, many flaws once they’re hooked on you like Miss Vickie's chips. If your MS is invisible you have the luxury of a little more time to keep things classified, because you don’t have to explain away a mobility aid or a limp, so figure out if you’re actually into this person before putting yourself on the line. Because:

It’s not herpes 
I mean, if you also have herpes, you definitely have to disclose that sometime between now and when your genitals meet, but you don’t owe it to anyone to tell them about your MS until you’re ready. Even if you use mobility aids, it’s up to you to determine when someone else deserves to know something so personal.

Be cool 
Do not schedule a We Need To Talk moment. How you tell your prospective partner will have a lot to do with how they interpret the news. They will mirror your attitude, so don't be weird. If you believe MS is going to ruin your life and makes you a less desirable partner, so will they.

Don’t apologize 
You are not damaged goods. Fuck that. Don’t let anyone allow you to question your worthiness of finding love. 

Get ready to get real 
Your partner might have his or her own secrets to barf out. Vulnerability begets true confessions, and you may find yourself hearing all about their bad credit, hoarder tendencies, or unfortunate tattoo. According to something definitely factual I read on the internet, 96% of people are keeping secrets. So, think about that. Maybe your secret won't seem so bad.  

Educate 
Be ready with some resources you can recommend (cough, Tripping On Air). It's hard to believe, but not everything on the inter webs is legit, and you don’t want anyone deep-googling worst case scenarios. Try to be chill, as you may have to field some dumb questions and a confused "But, you look so good! 

Hold-up 
It probably took you awhile to come to terms with MS. Thoughtful people who consider all possible outcomes make good partners, so allow some time for them to figure this out. 

Check yourself
Remember you’re a prize, and if you’re met with someone who only has tiny un-shareable plates, don’t take it personally. Some people will be scared off, and that’s their journey. It’s not you, it’s MS. Drink a bottle of Beaujolais with your bestie and continue swiping. 

As for Carrie, she kept putting herself out there. She found herself crushing on a new guy. 

Mid-relapse. 

He was crushing on her too, but oblivious to her health status.  When he finally asked her out, she was literally weak in the knees. She accepted his invite just as he noticed the bandage hiding her steroid IV site. When he asked what she’d done to her arm, a million potential lies swirled in her head until finally she just went with the truth; she was being treated for an MS flare. He said “Oh”, and they went back to discussing dinner plans. 

They had seafood. They went to Morocco. They’re getting married later this year. 










PS Thanks for sending all your great questions. Slowly, but surely, I will get to them all. 

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4.05.2018

Ask Me Anything: What You Need To Know About Peeing Your Pants.

Recently, I asked fellow Trippers to send me the deep, dark questions about multiple sclerosis that need answering, and you guys didn’t hold back. I got so many great questions that I decided to split them into a few posts. As always, talk to your doctor. This isn’t professional advice. This is more like a psychic hotline that somehow knows the letters M and S mean something to you, and then predicts you will fall down the stairs. Spooky, right? But not medical advice!

Your first questions were about one of the more distressing symptoms of MS, which also happens to be among the most common: the messed up bladder. From retention to incontinence, if you have MS, chances are your bladder is trying to ruin your life. If you’re among the fortunate few whose bladder isn’t a controlling jerk, well, start doing your kegels just in case. 

Nobody wants to talk about bladder issues, but I am here for you. As someone who has peed her pants in so many inappropriate places, I’m taking one for the team, and spilling my secrets on how I’ve dealt with it. 

Where were you when I needed you?



Cheryl B asks:

Are there any medications that are successful with treating bladder issues (I wake up every two hours during night/bedtime to go to the bathroom). My neurologist only recommends self-catheterization and I do not want to do that.

Anonymous cuts right to the chase: 

Diapers or catheter? My MS incontinence is pretty much the least sexy thing I can think of, so I don't really want to talk to my husband about it. 

Answer:

Ladies, I hear you. Double-voiding and limiting caffeine might work for some is a bullshit solution. I wish it were as simple as a pill; I know that catheterization sounds extreme, and just typing the word diaper hurts my horcrux, the idea is so appalling to me. Then again, so is publicly losing my shit. The point is, this thing is complicated. 

I have no experience with diapers, except I’m pretty sure I was a baby once. As an adult who likes to wear skinny jeans, and (no judgement), isn’t into kink (ok, some judgement); I’m not a fan. I realize I have to get over myself, because I don’t wanna contribute to stigma around the tools we must learn to love in order to blah, blah our best MS lives. So, let’s agree that diapers are helpful for some, and fucking call them something less…diapery. Like sparkle pants or les couches fantastiques.

Because even merde sounds better in French.

If you’re a regular reader, you’ll know that the clear winner for me is self-catheterization, which sounds terrifying, but is really just a fancy way of saying ‘tapping the keg’, which is just a trashy way of saying the “gold standard for medical bladder emptying” which is wikipedia's way of giving me first prize for peeing. Medically.  

Okay, maybe medical bladder emptying still sounds terrifying; or at the very least, confusing, but as a long-time practitioner, I can tell you it has liberated me (like for realz, not in the Zamboni way, if you’ve been around long enough to remember those dashed dreams). You can read my love letter to Cathy here.

Catheterization is not without its cons. I need regular antibiotics to ward off UTI’s and supplies can be hella expensive. Plus, I obsess over antibiotics messing with my gut biome, but that’s a topic for another day. Self-cathing isn’t for everyone, but not because it hurts (it doesn’t), or because of stigma (fuck that).

But wait! There’s more.

Before committing to sparkle pants or making friends with Cathy, most people with MS will try one or more of a number of medications whose goal it is to keep your pee inside you. Again, everyone is different but these drugs were not helpful for me. Preventing urgency made my retention worse, and caused side effects like dry mouth and constipation. If you think dry mouth doesn’t sound so bad, it’s because you’re not open-mouth kissing me, and if you think constipation is NBD, I’m so happy for you; you probably don’t have MS.

Another option for wrangling your bitchy bladder is botox, which I have not experimented with, but have heard good things about. This is probably the most aggressive way to go. If you’re gonna get botox, you have to have first failed on the meds, and be willing to use a catheter full-time, because once you botox you can no longer freestyle at all.

The good news is, you have options, so explore them. Many, like me, have been able to get this under control. Don’t suffer. For gods sakes don’t stop drinking.

Okay, but what about bringing sexy back?

Anonymous, like a lot of us, wants to keep things sexy in a decidedly unsexy sitch. And here’s where the emotional cost of MS comes into play. I get it. Feeling diminished by this disease is balls. I don’t even like getting dressed with The Banker in the room because I don’t want him to see me wrangle my twisted, dead-weight legs into my lululemons, as I fail to keep from sliding off the bed and have to use a 17-step procedure to pull myself up again. No. I need to trick him into thinking I’m a graceful ballerina while I tell myself he hasn’t noticed my Frankensteinian gait because I’m wearing a push-up bra.  

MS might be fucking up my body, but I still need to feel, and be seen as, capable, strong, independent, and yeah, sexy. Hopefully Mr. Anonymous will support whichever way you decide to manage this, because trust me, it is manageable. And nothing is sexier than having your shit together. So to speak. 


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3.25.2018

Ask Me: How To Be A Boss With MS

Those of us with chronic illnesses like multiple sclerosis become experts by experience, and as an MS blogger I regularly get asked about all kinds of things from what books to read to where to get an Optimus Prime. I’ve learned at least as many helpful things from others with MS as I have from doctors or nurses (okay, probably definitely more), so I do my best to answer every question that comes my way. 

This is your chance to ask me anything. Big or small, silly or serious; nothing's off limits. Regular readers already know I’m a big-mouthed, over-sharer, so don’t hold back. Post your questions in the comments below or on the FB page. If you want to submit anonymously, send me a message. Questions will be answered in an upcoming blog post. 

WARNING: Blogger about to make shit up.

So, what do you wanna know? 


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3.19.2018

How To Love Your Morning Routine With MS

There’s a lot of buzz right now about morning routines. They're the latest trend promising your best possible life, though they're nothing new. Everyone from Sigmund Freud to Steve Jobs had one, and I'm not above taking health advice from dead geniuses. Wellness experts all over the inter webs assure us that the path to perfect happiness and peace of mind starts with a routine that includes things like lemon water, meditation and making your bed, because studies have shown that people who make their beds are more likely to be actual millionaires.  

But morning routines are highly individual. If you're already a millionaire or tidiness isn't your thing, that's cool. Studies have also shown that making your bed provides a cozy home for skin eating dust-mites. Whichever side of the bed you wake up on,  there's a morning routine for everyone, and for those of us with chronic illnesses like multiple sclerosis, morning routines can be especially beneficial. They can help you:

Feel like a boss (even if you don’t have a job)
Medical retirement means never having to put on pants. This sounds great at first but can quickly lead to feeling like a garbage person. My morning routine makes me accountable to myself. It lets me tick off some easy to accomplish goals that make me feel like I have my shit together. 

Gain some control
I’m a type-A personality trapped in the body of a whatever personality type is the lazy and passive-aggressive one. Chronic illness robs me of what little certainty I think I have in this life, but a routine is something stable, a way to feel like I have a say in how my day’s gonna go. What’s more, doing the same thing regularly is a way to check in and see if today was different than yesterday, making it easier to spot changes in health and address them quickly.

Minimize decisions
Our days are filled with decisions. I only have a limited amount of them in me, and I don’t wanna waste them on what to have for breakfast, because even small decisions are exhausting. Having a routine means you can coast on auto-pilot while the pillow lines work themselves out of your face, conserving precious mental energy for more important choices, like what to binge on Netflix.

Nama-slay, bitches.

My MS Morning Routine

Wake up when I feel like it
Thanks to multiple sclerosis wreaking havoc with my life, making plans for the morning is the last thing I ever want to do. Let’s be clear: a routine is not the same as a schedule. Schedules are for normals, who sleep through the night and can balance on two feet in the shower, whose bodies cooperate enough for them to be accountable to that asshole Father Time. If your well-being doesn’t start until noon? Well, that’s when your morning routine starts. Fuck the sunrise.

Put on a bra
This sounds obvious but for a long time (like years) I didn’t start my day with this step. I was spending the better part of most days alone with the dog. She didn’t care, and she has, like, 6 tits. Alas, I have evolved past the canine. For the last few years, I start every day by putting soap on everything that needs it, and then getting dressed into clothes I didn’t already sleep in (but will probably nap in later).

Go for a walk
I’ve started roaming the long hallways of my condo like a ghost. In an effort to be active all day, I get up and walk the halls every couple of hours for about eleven minutes at a time, more if it’s a good day. Using my rollator, I think about each step; heel, toe, shoulders back, don’t swing the leg, don’t drag the foot, heel, toe. This slow, concentrated walk is almost meditative, which is just another way to say boring, but it reminds me that I’m still walking and that's something positive to concentrate on.

Make coffee, skip the dishes
Next I make coffee, take my meds, and update my Fitbit. Since I take approximately 7 thousand pills and supplements each morning, this takes awhile, but forces me to drink at least one huge glass of water, which is great because getting enough water is a challenge. If the coffee isn't quite ready by the time I’m done my meds, I’ll take a quick, guilty peek at Insta, but I try to stay off my phone until after I’ve finished this next step.

Journal and puppy time
This is the reward part of my morning for having shaved my armpits and walked a thousand steps. I curl up with my journal and coffee, and my 60 pound dog climbs into my lap. I’m not writing a gratitude journal about how I’m thankful for babies laughing or the smell of cinnamon. Who am I, Oprah? No. I put aside this time for processing my own narcissistic life. This isn’t advice, guys. I’m just a blogger making shit up.

Breakfast
I always have a smoothie unless I have to be somewhere and don’t wanna have to pee. By the time I get around to making this it’s usually been awhile since I last ate, which is ideal because delayed breakfast helps me get into ketosis which is a whole other thing. At this point I’ll drink my smoothie while checking email. 

That’s it. That’s my weekday morning ritual. Depending on how much time I spend with my coffee and burn-book, this whole routine takes about an hour and I’m ready to take on the world (or, you know, go back to bed).

What’s your morning routine? 

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2.14.2018

14 Valentine's Day questions about true love and MS

Love it or hate it, it’s Valentine’s Day, and if you’ve got love in your life, this is the time to flaunt it in everyone’s face. Whether you love your kids, your cat, or your significant other, it’s nice to know there’s a date on the calendar where it’s socially acceptable to drink too much wine on a Wednesday and eat chocolate hearts for breakfast, lunch, and dinner.  

I myself am among the hashtag blessed who are lucky in love, having been happily married for more than 13 years. And my luck must be obvious, because it’s frequently pointed out to me. It’s a popular idea that women with diseases like multiple sclerosis are especially lucky should they happen to find their Prince Charming and trick him into marrying them. 

Yeah, I said lucky. As in accidentally getting something great; something random you don’t deserve, or haven’t earned. 

Lucky for me, it’s my partner who thinks he’s the lucky one. The Banker and I hooked-up pre-MS, in a life that was so long ago, I barely remember it. We tied the knot post-dx, and from the moment we announced our engagement, our relationship has been judged by some as extra-special. Of course, we smugly agree that our marriage is the bomb. We’re both proud of what we’ve built. But even after all these years, we still find ourselves explaining the whole marriage-with-MS thing, because some are still genuinely baffled that a grade-A guy like The Banker would willingly sign up for a life with, well, a utility-grade girl like me. 

Is it ever reasonable to wonder why someone would choose the sickness part of “in sickness and in health”, so soon into a relationship? Maybe. Do I have a flat pancake ass? Definitely. The point is, YOU DON’T NEED TO POINT IT OUT, OKAY? Rude. 

Literally fucking everyone knows that marriage is hard, and divorce rates are high, and blah, blah; I don’t wanna gross you out even more with the break-up stats when MS is involved - especially if the partner with MS is a woman. You think it was “brave” of someone to marry me? Well, what about me? I walked down the aisle knowing I’m statistically more likely to offer to help you move than I am to hang on to a man who will nurse me through the worst of what MS can do. This scene obviously isn’t for everyone, and that’s cool. 

I didn’t want to marry you anyway. 

My defensiveness aside, I do understand the doubters who, for their own good luck or utter lack of imagination, can’t envision this life for themselves, or even for someone else. I also know it’s easier to scoff at the ignorance of how uncomplicated our marriage actually is  because, at least for now, we are still true partners. The impact this disease has had on our relationship has been manageable. I know that could change some day, but we’re not there yet. And I’ve been trying really hard to stay grounded in the present lately. 

So today, on this most sacred and holy day, I’m here to tell you that marriage and MS can coexist. Because The Banker and I are nailing it. And you don’t have to take my word for it: I decided to interview my husband so you could see exactly what kind of person does co-sign for MS. 


duh, we know

Thank you for coming.
This is our living room. I live here.  

Let’s get right to it. We’ve been married for like, 13 years. What’s the hardest thing about being married?
I don’t ask for help, and with marriage sometimes you need to be the one leaned on, but sometimes you need to do the leaning. I don’t always like to do the leaning. 

Are you saying MS isn’t the hardest thing?
No. It's not. 

Wow. I would have definitely said MS, followed closely by indoor temperature negotiations, but you usually let me keep the heat jacked. 
Well, I am the more considerate one.

That’s true. Is that why you married someone with MS? Because you’re a hero?
Uhm, no. It didn’t matter that you had MS. I married you because you are you.

Okay, but, I know it’s not always easy. What’s the hardest part about loving someone with a disease like MS?
Watching you struggle when I can’t do anything. There are times when I can’t help; like, I can’t make your legs move for you, and I feel helpless.

What’s the biggest thing you’ve lost or had to sacrifice because of MS?
I don’t think I’ve lost big things. It’s smaller things, like holding hands while walking. When I’m pushing you in Optimus, it’s harder to have a conversation.

You don’t think it’s romantic to yell into the back of my head “WHAT? I can’t hear you”?

What would you say to people who believe you got a raw deal?
You do so much to help me experience life. When you’re in a marriage you do stuff for each other. I don’t see it as stepping up. We work to our strengths. I’m doing what I can to support my wife, but you do so much more for me.

I am pretty great. Let’s explore that. What’s your favourite thing about me?
It’s tough. There are so many things that I like; I can’t narrow it down to the best thing.

Yeah, but try harder.
It’s easy to point out your physical attributes, your mind, and your personality. That stuff’s easy; but like, you make me a better person, and you make me enjoy life.

If you could take on one of my symptoms for me, which one would it be? 
I think I would take on all of your symptoms, in a way to shoulder it; so like, if we could split them almost. So it’s not as big a burden for you.

What, like 50/50?
(Long pause) Uh…60/40?

60/40. You really are a hero.
It would be difficult for both of us to be fucked; so fine, I would probably take on the fatigue just to let you do more stuff. I think I can fight through a lot of tiredness; I don’t get a lot of sleep during the week anyway.


Oh NO he didn't.


So, you’re saying you could handle MS fatigue better than me? 

(We explored this for the next 27 minutes.)

What do you think is the biggest misconception people have about MS?
Apparently, it’s fatigue.

What do you think is the most important quality someone with MS needs to have?
Empathy.

Empathy?
MS is always gonna be worse than whatever the healthy person is going through. 

Are you saying I lack empathy for your man-cold and dislike of needles? 
This feels like a trap.

Before we wrap this up, let's find out a little more about you. Did you always know you wanted to be a banker?
No. You know I’m not actually a banker, right? I don’t even work at a bank. 

What’s your favourite thing to do without me?
Eat gluten and sugar. 

Do you agree that drinking every day is a good idea?
Wtf does that have to do with MS?

Nothing, I was just hoping you would make me a drink.

Who would play you in the movie of our life?
James Franco?

Ew. The correct answer is Benedict Cumberbatch. 

Final question. How much money is too much money to spend on Valentine’s?
Valentine’s is a made-up, commercial holiday.

Yeah, that’s why it’s so awesome. You get the presents of Christmas and the candy of Easter without having to go to church.

Happy Valentine's Day, Trippers. I love you all.

xo
A.

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