Been there, done that (and I’m so grateful)

You have. Not me. And I’m so grateful for the wisdom.

Here’s the thing.

We call multiple sclerosis a snowflake disease and with good reason. MS is never the same for any two people. Things that are major issues for me, may not affect your friend who has MS at all. And I will be the first one to tell you to shut your damn pie hole when you tell me about your cousin’s friend’s grandmother who runs marathons with MS because…just shut it. We can still be friends that way. But I digress.

Things that have never gone wonky for me, may drive you crazy on the daily. There are many symptoms I haven’t yet had the pleasure to meet. And no. I’m not stupid enough to actually write down a symptom I do NOT have. That’s terrible MS karma and I’ve fallen victim to it before. Fool me once! You know how that goes.

The thing that amazes me lately, though, is not how unique and special my disease might be but how utterly normal and mundane my MS is in almost every way. The problem is that nobody of the medical professional variety has ever told me, warned me, or talked to me at all about some of the weirder things that can happen, therefore I spend a lot of time with this soundtrack flying around in my mind…

“Is it MS if I’m in pain all of the time? Is it a muscle pain or a nerve pain? When I put my head down and get that tingly feeling down my spine, is that my MS? It’s not a pain, it’s more like a tingle, but people call it pain and I don’t call it pain, so maybe it’s something else entirely…Is it crazy that (fill in the blank) is happening to me or is it just my MS? WHY WON’T ANYBODY TELL ME ABOUT THESE THINGS?!?!? WHY MUST I GUESS AND GOOGLE UNTIL I THINK I MAY GO MAD?!?!?

This soundtrack is the background music to my life. It started even before I was diagnosed.

My ever-patient BFF and fave sidekick in life had to listen to me say things things like this out loud constantly in the year leading up to my official diagnosis. The one instance that is most vivid to me was when we’d be getting out of my car to walk into our bar for what we called “happy time.” I started to notice that when I stood up after sitting for any period of time, my legs would do a little shake thing. Like a tremble. Before I took a step toward the bar.

In fact, I know I said something really close to this because my BFF does this awesome thing where she writes down crazy things I say over the coarse of a year and then prints me up a book full of them each year on my birthday. I guess I say a lot of crazy things? Go figure. But one day as we went to walk into our bar I actually said something to her like, “I wonder why my legs do this little shake thing when I want to walk anywhere. I’m like a shimmy waiting to happen.” Or something to that affect. A quote something like that went into the book that year among other equally weird things I might have said in that 12 month span. It was like a foreshadowing of shimmies yet to come.

I suppose the doctors don’t tell you what to expect because they don’t want you looking for things to “blame” on MS. It’s kind of a mind-screw (to be polite) really. They make you guess what might be your MS until you can’t stand it anymore and you ask then they say, “Well, Maribeth, that can be very normal for people with MS that presents like yours with lesions in the blah blah blah area and blah blah blah…” I actually hear the blah blah blahs because I’ve gone mad with rage just thinking of the time I could have spent not agonizing about the symptom du jour.

That’s where you guys come in, really.

I knew this blog was helping me, mentally speaking, just to have a venue for the overwhelming feelings that bang around in my head, bouncing into each other growing larger like molecules turning into evil compounds along the pathways of  my broken central nervous system. Those thoughts have to be released somewhere if anyone is even remotely capable of dealing with the hot mess that MS turns our lives into sometimes. But there’s been a surprising and awesome upside I never predicted.

As it turns out, you guys are much better at the advice giving and symptom checking than Google or The Great Scott (all due respect to the Big G, and the TGS). You guys knit together random posts and thoughts and things I share, then you come up with a pretty damn good explanation and send it to me via IM or on a Facebook post and I feel instantly more calm knowing that I’m not actually losing my mind.

The most recent example was when one of my personal MS-gurus, I call her Joda (the Yoda of my MS). Joda and I have never met in real life. We didn’t even meet in one of the many MS-related forums and groups. We met completely randomly through a mutual friend on Facebook. The serendipity inherent in this “meeting” kind of blows my mind more than a little.

So, Joda knit together a few things that led to a place I’d never even considered before related to how my body functions (or doesn’t) in the outside world. Those seemingly unrelated but probably related things are as follows:

  • When I make it to work, I now require a special chair for supporting my head and neck because I’m in so much pain at my desk I can barely function. This chair has a neck piece and makes me feel like I’m the commander of the Starship Enterprise (or “just like that really smart guy in the wheelchair? What’s his name?” said my friend at work. “That would be Stephen Hawking and probably not the best comparison to make to the sometimes crippled girl.” And we laughed and laughed).
  • The new chair helps, quite a bit, but it still doesn’t alleviate the phenomena that occurs where by at the end of any day (even a good leg day!) when after a few hours in my office, I’m practically dragging my legs across the street to the valet, praying I don’t fall down before I make it there. Like clockwork. Weird.
  • Then there was the day I posted about how my trip to Target nearly killed me, as I pretty much became Frankenstein about 1/2 way through the store. I couldn’t keep up with my mom (who was with me and getting more and more concerned the longer she watched me lurching around). And again, by the time we were walking back to my car, dragging my legs behind me like big stupid wooden logs instead of my formerly functioning legs. It was a good leg day or I wouldn’t have even considered a trip to Target in the first place!

These things can’t possibly be related. I clearly am trying to make connections between random things that have nothing to do with each other, I tell myself. Not everything is about my MS!

Until it is.

Joda, amazing font of MS wisdom that she is, happens to mention very casually that there could be one thing connecting these phenomena that I never knew was even a thing! This one thing that might explain why my home is usually the place where my body feels the best (which isn’t saying a whole lot lately but you get me).

It’s the lighting! Joda tipped me off to the one thing all of these places have in common. The lighting. The damn bright, jarring, previously unpleasant but never energy zapping, light that is pervasive in all public places.

This artificial lighting, fluorescent and otherwise, in public locations can cause symptoms to flare up temporarily. Well shut my mouth and get me to Google…and lo, there were stories among the thousands from people who have similar experiences. People who are forced to wear tinted lenses or actual sunglasses at all times in artificial light. People who suddenly can’t walk halfway through Target (they actually refer to it as “the Target effect!”). People who have trouble with bright lights when driving after dark (ahem). This isn’t something new! People have been talking about the Target effect for years and years all over the interwebs and yet nobody thought to mention that to me at any of my visits to The Great Scott. I guess they don’t want to “suggest” symptoms you might never have?

Whatever the reason, every little bit of time that I can save trying to puzzle out if I’m crazy or if it’s my MS, every little bit of that time is critical because feeling like you might be losing your mind while you’re simultaneously losing some pretty important physical functions is a shitty, horrible place to live. Feeling like you might be losing your mind is one of the worst things about having a disease that is such a snowflake, sometimes, but at other times, not very snowflake-like at all!

Just tell me I’m not crazy and things get instantly better.

I know this is a big ask. Clearly, if you know me at all either digitally or in real life, you are well aware that my sanity has been pushed to all new levels of delicacy. I nearly lost my damn mind during my first relapse. I literally thought if I stayed one more day in that hospital bed, I could be certified insane and put into another, entirely different, kind of hospital. I can go a little batty trying to figure out what time to shower is the safest for me on a particular day because there are so many goddamn variables that my mind bends a little just trying to think through how to take a damn shower.

Telling me I’m not crazy, and not lying, is a stretch on pretty much every single day. But as soon as Joda shined the light, Kara jumped in and corroborated and then Google verified the masses and masses of people with MS who struggle with the very same thing, I felt a million times better. I know that’s also not saying much lately, but any better is still better.

On the downside, I’ve discovered yet another thing that I have to plan around. Maybe I don’t go to Target so much anymore. I’ve got Amazon Prime for most things anyway, right? I sat in my office in my Stephen Hawking chair in the dark last week and you know what? Even though there is bright glaring light all over that place, sitting in the dark with just the glow of a desk lamp actually helped my pain. It does bring up concerns, of course, that I’m now not only going to be the girl who looks funny and walks funny but now I’m also going to be THAT person. The one wearing sunglasses indoors.

Maybe it’s not entirely out of the realm of possibility that part of the reason I love being home so much of the time is not only that I can hide from the outside world of normal and very fast walkers. It is also because home is where I feel, physically, the best. I am in control of nearly every aspect of my home. Except the damn steps, of course, but I refer to those steps as my daily workout, so there’s that.

I mean, I keep wondering when it will be that I can entertain the idea of air travel again what with it involving so much of every little thing that is bad for my MS. I think sunglasses will be a must for travel to occur. Also, at my super brightly-lit giant corporate campus in Atlanta I will now likely have to be Sunglasses Girl with the Draggy Legs, but hey. My brain still works pretty damn well and I have always enjoyed being the center of attention before it was a medical thing, so maybe it’s OK?

Nah. I will hate everything about that scenario. But I can force myself to remember the many times one or a bunch of you proved to me that I am not entirely crazy after all, and I will feel a tiny bit better.

I’ll take any kind of better I can get these days. I’m so amazingly grateful for this network of wise MS friends I’ve made over the past two years since my diagnosis in December of 2015. I get kind of misty just thinking about it.

The Great Scott may be great, indeed, but you guys are the real miracle workers.

I’ve got nothing

So let’s try this thankfulness thing…

Usually my blog posts start as thoughts that I can’t get out of my head. I noodle and I roll them around until I virtually have to sit down and get it out before it drives me insane. Lately, though, my mind has been a bit dark. The truth is, I’ve got very little to say lately about my MS and how it’s generally screwing up my life, continuing to do so well past the deadlines I’ve imposed on myself like so many fake lines in the sand. The deadlines come. Then the deadlines go. Nothing seems to change. And the world keeps turning. Who wants to read about that?

I don’t even want to write about that (even though this blog would indicate otherwise).

I discovered recently at my second full dose infusion of Ocrevus that The Great Scott told my infusion room friend Marci that the magical superhero of DMTs that is supposedly the new goo can often take longer to “take” for those of us over 40. Well. I’m staring down 51 and I’m here to tell you, that shit is true. I actually felt worse after my last  infusion. It seems to be lifting this week but I had a weird bout of Frankenlegs today as I attempted to get myself to my first manicure in…months? I think it’s been months. So, there’s that.

I’m terrible at the gratefulness thing in the middle of this hot mess that my life has become. I chastise myself constantly. I tell myself it could be so much worse. I know this to be a fact and yet it doesn’t help me get all full of hope and light like it should. It just doesn’t. Maybe I’ve sunk a bit too low but the funny thing is, I don’t feel depressed. I feel some kind of weird apathy starting to grow that maybe I just need to stop fighting it so hard and start realizing that this is my life now. It just is! It’s mine and I should learn to love it, not be resigned to it, as I often feel I am.

In the spirit of the Thanksgiving holiday (where we celebrate the false story of pilgrims sitting down with the Indians all friendly like when in fact there was a whole lot of pillaging and killing native peoples by the thousands going on), I’ve decided to try harder at being less apathetic.

I like turkey. I like getting together with my family. I’m going to focus on this impending day as a chance to focus on my own little twisted form of gratitude.

Things I am thankful for…MS Edition

1. My amazing family, friends, co-workers, neigbors and various others who help me to actually live some kind of life that includes laughing, love and kindness. Without these various people…I’d be sunk. Thanks for keeping me afloat.

2. Nothing fills me with more gratitude than things being handled and thus no longer something for me to think about. Something for me to do. One example of this is the giant package of toilet paper that my wonderful sister got for me at Sam’s Club recently (even the thought of going to Sam’s Club makes my legs feel funny). She delivered it to my house. Every time I look in the upstairs linen closet I feel an intense sense of calm. Yes, you read that right. Massive amounts of toilet paper represent one tiny thing I do not have to deal with for a very very long time. Toilet paper has given me peace.

3. I’m grateful for my grocery store that delivers. I almost kissed the woman who dropped my bags inside of my door with nary an ounce of effort on my part. She was frightened. She was wise to be frightened.

4. I’m grateful for great health insurance and a great job that allow me to fund this insanely expensive disease. Drugs and doctors costs money, people. MS drugs and specialists cost even more. Thank god I am generally able to deal with that web of crazy as a result of this very important fact – I remain employed in a job I love. That’s huge.

5. I’m incredibly thankful for Cheryl my therapist who is attempting to keep me sane through this whole thing. Sometimes that takes the form of just giving it to me straight, like this past Tuesday when I said, “I’m trying really hard to see the silver lining here.” She replied, “Well, you should stop that because there isn’t one. This sucks. If anyone says it doesn’t I will fight that person.” And I instantly felt peaceful for the first time since toilet paper delivery day.

6. Dana B. my incredible hair girl is a gift in my life. I get an appointment with her, and I immediately feel better. I know that I will feel human again once she does her magic to my short-haired head. She will spin the chair away from the giant full length mirror that the chair sits in front of, when she notices me squirming at the mere thought of having to look at myself in my current condition for even five more minutes. Growing my hair, even a little bit, created a situation where my unwashed bedhead looked exactly like unwashed bedhead. This could not stand. Dana cleans me up and makes everything right again. I have workable bed-head hair again that some people even think is (dare I say it) cool! For that, I am incredibly grateful. Somehow, Dana makes even bedhead look amazing. Also her salon is one of my happy places. She just gets me.

7. I am thankful that I finally found the perfect pair of black leggings (thanks Universal Standard) as well as the perfect slippers that won’t kill me (thanks Glerups…yep that’s a thing). Also, since I spend a lot of time in slippers, I’m grateful for my Halfinger kitty slippers too (also not deadly). I can never have too many non-deadly slippers with kitties on them.

8. I’m grateful for Old Navy for making my favorite fold-over-waist yoga pants for years and years and years. Now that I wear them almost daily, and laundry involves many steps, I was most relieved to make this discovery. While we’re thanking clothing stores a big thank you shout out to American Eagle for my favorite uniform top the “soft and sexy t.” I do feel very soft (but not very sexy) every time I wear one of the 8 or 9 long sleeve black t’s I now proudly own.

9. I’m grateful that people write amazing books that I can read and forget about things for just a little while. I’ve read 32 such books so far this year and there’s still time for more.

10. I’m really grateful for the lovely woman who did my microbladed eyebrows. If not for this talented wizard, I’d be walking around eyebrow-less on days I don’t wear makeup which is most days these days. Nobody wants to be a picture without a frame. Some days, those eyebrows give me actual joy…I am shallow. And vain. This has long ago been firmly established but that was the best money I’ve ever spent.

11. I’m really grateful for all of you, out there, my digital MS family who are sometimes the only reason I don’t lose my ever loving mind on a daily basis. Your guidance, your stories, your advice and life hacks – your mere existence makes me feel less crazy. Someone else out there has pretty much experienced everything I have, often times all at the same time, and survived it. That is the only thing that can make me feel better sometimes. Plus, you guys are funny as hell.

12. I woke up this morning (already a win). I spent the day making yummy things with my mother, my most favorite person in the entire world (and I have a lot of favorites). She never fails to make me laugh. And we move at about the same speed these days though she is much more ballsy than I am. Nothing holds that woman back. I need as much of that in my life as I can get right now.

13. People that love me, enough of pretty much everything (too much of most things), a home I love, a bunch of kitty cats to keep me busy and calm all at the same time…

Ok. As it turn out, I am incredibly grateful for a whole lot of things. My life is awesome. Even with MS. Even with my funky walk, dirty hair and random dramatic falls. I am incredibly fortunate. I will try to remember that more often.

Happy Thanksgiving, y’all. May tomorrow be a good leg day, a great food day and full of all of the things that you’re grateful for.

I finally had a massage

That one time a miracle occurred and I got a shot of all four felines in one frame. There from the top are Ivan (14), Owen (12), Fred (14) and Roger (9). My furry matching menagerie.

(READER NOTE: If you are a cat lover, or any kind of animal lover for that matter, this might be a post you want to skip. I’m serious. I can’t bear to think I’ve shared something that would upset anyone reading. Come back next time. Seriously. I won’t be hurt. I wish I didn’t have to write this one. I felt like I had to. Also, to be clear, all four of my beloved felines pictured above are all very much still with us. Happy as little clams. I promise.)

I had a massage yesterday. A very long over due massage.

I’ve been having some super irritating pain in my neck and back. I’m not MS-savvy enough to know if this is disease related or something else related. I’ve been seeing my massage therapist Michael, for over 18 years. I found him when I moved into my neighborhood at a salon very close to my house. He has become a friend and not just my massage guy. He has an awesome wife that I also really like a lot. I am usually an every other week massage customer so he might technically be my longest regular relationship with a male person. (It totally counts!)

But, I haven’t seen Michael since before the relapse in late July. That’s way too long. My back and neck (the area I affectionately refer to as my hump) has been throbbing with pain for weeks now. Of course I have no idea if it’s MS-related pain, or some other pain related to any one of a million different things. Even after the massage I was sore all night and into this morning. Tonight it’s a bit better. It doesn’t feel nearly as bad as it did yesterday but it’s still pretty sore.

I shared my slew of great news while laying face down on the massage table for optimal back and neck access. My news sounded a bit like this…Relapse, hospital, being home bound, more steroids, more steroids again, dead father, funeral, aftermath, finally getting back on my feet, kind of, the end. A veritable slew of fantastic news that I am growing weary of telling. I’m just going to make something cheerier up for the next time I see someone I haven’t seen in a while.

Then Michael showed me a picture of his new kitten Javier.  We always talk about our cats when I visit. Michael has two cats. Max is 0nly 6 years old. I stupidly asked how he was managing with three cats now. He said, “Well, that’s kind of a terrible story.” And I said, “After my litany of terrible news, how bad could it be?” I mean, I’m a realist. I had to know. I think about how I will handle the death of one of my cats all of the time! It’s morbid. And impossible to stop doing. Turns out that was a stupid thing to say. I was thinking to myself, “You need to hear this. You have a house full of old cats. You have to be prepared. It’s inevitable.”

So Michael told me what happened to Max.

Michael woke up one morning and heard his two cats running around the apartment, chasing each other and playing. That wasn’t unusual at all. He laid in bed listening. Then he heard a very strange hissing. He said it surprised him because his cats never hiss at each other. So he got up to look. His cat Max was laying on the floor panting with his tongue laying out the side of his mouth. Something was obviously very wrong. He started making growling and mewing noises as he tried to get to his feet but his entire back end couldn’t get off the ground. He was attempting to drag himself around, moaning and dragging his legs behind him on his belly, propelling himself forward with his front paws. Michael said it was a horrifying sight and the sounds were terrifying.

Our collective vet is literally three minutes from Michael’s apartment (also close to my house). He saw that it was near 8AM and he decided to get to the vet the second they opened so that he could decide if he could make it out to the emergency vet hospital, that is at least 30 minutes away from where we both live. He somehow got Max into a carrier, Max screaming the the entire time. He was biting at the metal bars on the carrier, making his teeth and gums bleed. Michael said he’d never heard those kinds of noises coming from a cat and he was freaked out. He’s a cat person. He’s had many cats. For him to be shaken like that it had to be pretty awful.

When Michael got inside the vet office, the receptionist told him there was no vet there until 8:30AM. The sounds coming from the carrier were getting worse, as was the blood coming out of Max’s mouth from trying to bite on the metal bars of the carrier. Michael opened the door to attempt to comfort Max. But there was nothing he could do to make the wailing and panting slow down. While his hand was in the cage attempting to comfort this poor cat, Max clamped down full force on Michael’s hand and bit his thumb hard. Now, Michael is bleeding too, all over the vet and all over the floor. Thank god he was called back to the examine room more quickly than he thought (thank heavens for early risers).

The vet tech saw what was going on and brought Max to the back immediately to be looked at. Michael just sat in the little exam room all by himself, feeling sick from both the blood and pain from his hand and the condition his cat was in. The vet tech had given him a cloth to hold on his bleeding hand to stop the blood.

The vet came into the exam room. Thank god it was the woman vet we both tend to like most. She explained that Max likely had a pulmonary embolism. He was paralyzed from his waist down and in a great deal of pain. There was only one thing to do. She asked if Michael wanted her to bring Max into the exam room for the injection. He, of course, said please, yes.

She walked back through the door in the exam room to the back of the facility where the procedures happen and was back in the exam room within less than a minute. She said she couldn’t bring Max in. He couldn’t be moved without causing him excruciating pain. She would have to bring him to the exam room once he was gone. By that time, Michael’s wife Mary was there with him. They both sat looking at poor Max wrapped in a soft blanket on the cold steel exam room table, finally quiet. Hearts broken.

I was on the massage table face down as he told me this story and I could feel myself getting anxious. What would I do? How could I ever handle such an event? How could I manage to do all of that if one of my very large cats is ever in such a situation? Would I even be able to manage it? Who would I call? I would probably call my friend Sandy but she’s not at my service at the drop of a hat. Nobody would be or should be. I might call Alex, my nephew who is my go-to helper…I honestly don’t know what I would do. It was making me sick just thinking about it. I was grateful to be face down. I don’t know what my face was doing with all of this running through my head watching tears dropping to the floor from the center of the head rest.

All I could think about all the rest of the day and into that night as I lay in bed still thinking about it incessantly, was what would I do in a similar situation? I tried to send a wish out to the universe to allow my kitties to go quietly in their sleep, when they have to go. Let me just come upon them once it’s over. Let me not have a dramatic final panic (like Michael went through) that I’m not sure I could even begin to handle. Michael is a strong guy – physically and otherwise. He’s not broken. Like me.

I can’t get it out of my head. I thought if I wrote it down it might help. It usually helps. It’s not helping as much as I’d hoped it would. But I had to try. I often feel lately like I have the world’s shittiest luck. You’ve probably read those exact words in previous posts. It’s a problem I have. The thing is, that’s so selfish and ungrateful of me. I have so many things to be grateful for even now. So many things have gone my way in this life that I should never have one day where I am not brimming over with unmitigated gratitude.

I feel like this disease changed everything almost instantly. Now, I’m the “only-bad-things-girl” and it scares the shit out of me. Why would the deaths of my cats be anything but horrific? That’s usually what I get these days. I have this certainty that I can’t shake. Only bad things. Only bad things. Only bad things. That’s not true, is it? It can’t be true.

That’s some major catastrophic thinking right there. I can hear Cheryl, my therapist, in my head and I know she’s right (even virtual Cheryl is usually pretty right on).

I need to shake it. Believe in something good. Believe in good outcomes and you will get good outcomes. It’s so freaking hard after nearly two years of my health going pretty steadily down hill before my very eyes. It’s really, really hard. How can I find my own faith in good things? How can I start believing that good things will start happening to me once more, if I can just get through this part. This shitty part. I need to make a plan. I need to figure out how.

Actually, I’ve done something entirely different. I’ve decided to try not to think about it at all.

Ha! How mature of me. My “plan” consists of this: Deal with that horrifying thing when that horrifying thing happens. Stop anticipating horrible things happening. Start believing that good things will. That’s usually my only and best option. Sounds easy.

It’s not.

(Sincere apologies to all of my cat loving readers…I know this one was painful to read. I wish almost wish I hadn’t written it. But I had to get it out of my head. I hope you will forgive me.)

Twas the night before infusion #2

Tomorrow, merely one sleep away, is my second full dose of the new goo (Ocrevus for new readers).

I feel like a kid before the first day of school. My lunch is packed. I have an extra water bottle ready. Speaking of water, I’ve been chugging it all day in order to have plump and juicy veins with which to infuse that magical elixir…I’ve laid out my clothes. I’ll be in bed before 9:15PM since I have to be at the hospital by 7:45AM.

It will never stop being a mystery to me why they tend to schedule appointments for people who have MS so early in the morning. They KNOW how mornings work when you have MS (i.e. they do not work at all) and yet, here I am. Stressed out about the mere idea of a 6AM wake up call. But I’ll be there with bells on at 7:45 AM sharp because I’m more than ready to feel even a bit better.

I think my hopes are irrationally high.

We all know that it was only a month or so after my first Ocrevus infusion when all hell broke loose. The Great Scott has done what he could do to assuage my fears that maybe the new goo wasn’t the right goo for me…he insists on clinging to the notion of “just bad timing, Maribeth” and I’m kind of clinging right along side of him. We’re buds that way now.

I just want to be able to do more things. I just want to feel better so that I can stop spending so much time at home. So I can be interested in other things. Life things. People things. Thing that exist outside the realm of my home address. I want to feel happy again and not afraid of falling every minute of every day. I want the pain to stop haunting me every single freaking day. I want to go back to normal bad (which was actually good) instead of relapse bad (which wasn’t any good at all).

I want to shower more than once a week.

All of these things seem so greedy to me now. Now that I’ve gotten my first glimpse of that relapse life, I’ve finally remembered to be grateful for the regular bad (good) my life used to be. I’ll even take the 5 minute Solumedrol energy bump I’ll get with my Ocrevus tomorrow. I won’t even care if I turn into the woman on the moon again around the facial area! I just want to feel a teeny, tiny, smidgen of better. Even for a little while.

So I’m putting it out there in the universe properly this time.

I will feel better. Things won’t be so terrible anymore. The new goo is wonderful and the bad timing is a thing of the past. Tomorrow, my timing will be perfect. Right time. Right drug. Right as rain.

Gotta go drink two more liters of water before bedtime. Don’t want to have dried up invisible veins for my big day. I’ll have the best veins ever.

Are you listening, Universe? I said I’LL HAVE THE BEST VEINS EVER. This is gonna work. Got that?

My expensive Internet slippers tried to kill me

Um…I’m a tad bit bruised around the nose area you might say.

It’s been a good long time since I took a good tumble.

I haven’t bragged about it much. Especially whilst suffering from the dizzies and woozies during this last relapse because it felt a little like tempting fate. I’m brave. I tempt fate a lot. But I hate to fall, so call me conservative on tempting the falling god, I wasn’t gonna brag about it. I’m sure wherever she is, God of Dramatic Falls would love to look down upon me and smite me something good.

And lo! So it was that I was visited by the God of Dramatic Falls earlier in the week, in front of not one, but three guests (one was a baby and she barely noticed, bless her heart). Since one of those guests was my mother, this was not the most convenient time to have such a dramatic battle with gravity as I think I nearly gave her a heart attack from the panic.

The thing is, it wasn’t entirely because of my MS that I took this expertly choreographed nose dive into pointy corner of the wooden post that supports my stairs and railing. It was only partially because of my MS but mostly it was because of my formerly favorite slippers.

You may have heard of them. They are advertised all over the internets just waiting for suckers like me to spend much too much money on a pair of slippers. I mean, why buy regular old cheap slippers when you can spend way too much on these! They’re called Mahabis.

What lured me in to buying Mahabis (not once, but twice I might add) was this awesome rubber bottom that attached to the wool slipper with a nifty little snap at the back of the slipper essentially making these slippers indoor/outdoor friendly.

I wear them a lot when I’m home since many slippers are deadly to me because they are too slippery on my mostly hardwood floors so I liked the rubber sole option. Also, as you might be aware, I spend a lot of time in lounge wear. It’s kind of nice to be able to run out to, say, the pharmacy, the grocery store, to the trash bins outside – or even to a restaurant for early-bird special sushi dinner (hypothetically).

I actually did this just a few short days ago.

I went out in my lounge wear, covered in cat hair, sporting epic bed head and wearing my snazzy indoor/outdoor slippers. The sushi was wonderful. My dinner companion unfazed by my obvious lack of cleanliness. My psyche only slightly damaged by being in public among the people after actual dark. I mean, it was 7PM when we left the restaurant but to me it felt like midnight. The miracle slippers look like this and they come to your house in a fancy box:

The slippers of death.

But I digress. Back to the story at hand…

I was picking up a dish that I had set out with some cakes for my guest to nibble with her tea while she sat on my couch feeding tiny adorable little baby Stella. I wanted to get the dish out of her way and carry it into the kitchen. Easy, right? Sure. Definitely. No biggie. My mom was in a chair across the room chatting with my friend about her formula that she has shipped in from Germany and how different it was back when my mom had her babies etc etc. In other words, she was distracted or she would have never allowed me to attempt to clean up the table all by myself.

I had the dish of cakes in one hand, absolutely nothing in the other and began to walk toward my kitchen completely unaware that the tiny snap that holds the rubber bottom to the top of the slipper had come unsnapped. The rubber bottom was unattached from the top of the slipper like a giant floppy tongue. It caught on the area rug runner I have going from the front door toward the kitchen and sent me and my dish of cakes flying forward.

As I was going down, because as I explained earlier my damn foot was stuck (flappy rubber bottom thingy was stuck between my slipper top and the rug), I was thinking omg, omg, omg, omg, no, no, no, no, not now, not here, NOT in front of my mother (she’ll never stop worrying about me now)…When BOOM. My face hit the corner of the wooden post of my stair railing, the dish went flying and the cakes spewed every which way.

Falling is both horrible and terrifying. It also feels like it’s not actually happening because in your mind, you had absolutely zero intention of doing the worm on your belly like you were attending a super crazy frat party. But somehow you are now lying face down in your living room on the hard wood floor absolutely stunned.

My first reaction was to feel my nose to see if I’d broken it because I hit that point on the wooden post face first and I hit it hard. To be honest, it hurt like I broke it but there was no blood which seemed like a good sign to me. It was throbbing, however, and that felt like a very bad sign. It felt bigger than usual on one side.

Whilst I was falling to the floor in a violent, messy, manner my mother jumped up from her chair and practically sprinted across the living room toward where I lay, to see if I’d survived. All I can say is thank the goddess that she wasn’t holding that 6-week old baby at the time because she just may have tossed her in the air in her frantic adrenaline powered panic to get across the room to me, still on the floor face down.

Falling is also surreal. When you sit yourself up you are in utter amazement, astonished that your body just did what your body just did. It just feels so wrong! As if things like that shouldn’t be possible in a decent world. I was dazed and in pain looking at cake strewn all over the floor and assuming shards of plate scattered over the hardwood floor. My mom had my face in her hands as she examined me to make sure I was actually and truly OK. I looked a little forward and saw the plate the cakes were on sitting under the leg of a small stool, unbroken. I gestured for my mom to get it before we pushed down on the stool and shattered it into a million pieces. I remember thinking…how the hell did the plate get UNDER the leg of that stool without getting broken? It didn’t seem possible in a sensible universe but this universe I live in is anything but sensible, so OK sure, I’ll accept the unbroken plate as a good outcome of an unpleasant, unplanned bit of acrobatics.

I did try to get up to get the plate myself, but my mother firmly told me to sit the hell down and stay still. She had already picked up the cakes, got my cordless vacuum from the kitchen and was cleaning the mess. Every time I tried to offer to get up and help, she gave me a look and I immediately stopped trying and sat the hell down. I’ve seen that look many times before over the course of my 50+ years.

It was the same look she has given me all of my life when I knew I was about to experience the full wrath of the powerful force that is the quintessential fully-in-charge-of-the-situation mother who loves you but is not having your crap right now. Whether it was for telling a lie and getting caught (“Tell the truth and shame the devil, Bethie”) or whether it was for taking a loan and not paying it back (“I should have named you crime because you don’t like to pay”) or whether it was for upsetting her in any of a hundred of ways…I got the look. I stopped. Did as I was told. The end. It was that same look she gave me each time I tried to get up.

I should emphasize the “trying” part of that sentence. That’s where the MS thing comes in. I was shaking, my legs no longer operational, my body aflame in pain pretty much all over. I had to crawl to the carpeted steps on my hands and knees (attractive) to get a good hold in order to hoist myself up. All the while, my friend is still feeding her beautiful baby telling me it was no big deal, don’t be embarrassed, everyone falls etc etc etc (and me feeling every one of those things was very far from the truth but grateful to her for saying them).

I couldn’t walk completely upright because of searing pain in my lower back. I fell on my face and somehow hurt my back? Even I’m impressed with that feat. My legs shook and felt inoperable as I stood up. My face throbbed. Today, two days post-fall, my nose has reached new levels of purple, it looks to be spreading to my eyes a bit and my shoulders and upper arms are sore like I lifted weights yesterday during a good, long workout. I didn’t do that. Obviously.

So, there you have it. My no-falling streak starts over as of last Friday. I made it almost 18 months on my feet the last time. I’m gonna try for two years this time. You know I like a good challenge. I’ll try to achieve this goal because my body didn’t really need the additional pain that comes with falling, on top of the regular old pain I’m always feeling. Nor did my face need redecoration of this particular sort.

Only 8 more days until Ocrevus infusion number 2. Let’s hope it does some magic and gives this body a little boost.

My body could use a damn break. And I’m not talking about my nose.

Keep Passing the Open Windows

Finally a real top down day.

That’s the best advice I have, after beginning to come out of my very first significant relapse since my MS diagnosis nearly two years ago. Keep passing the open windows. I’ll explain more about that later, but first a few details.

I had two big meetings last week. One you already know about that I got through by the miracle of high dose prednisone. After 1000mg of Vitamin P, you can pretty much do anything.

But I had another big meeting looming the following Wednesday this time a lunch with the CEO of our largest client, someone I consider to be not only an amazing client but a good friend. I was beyond my steroids by almost a week. I know enough by now to know that Vitamin P high only lasts a few days for me, but I hoped with all of my heart the remnants would get me through this next hurdle on an unusually hot September afternoon. I mean really hot. Like 92 degrees record-breaking hot.

It made it. I had a lovely lunch meeting. My client did as I asked and allowed me to walk behind him and not in front as we left the restaurant just in case (I was definitely walking a bit wonky which still makes me feel self-conscious even after all of this time). I made it home, got into bed super early and told myself I would try to make an appearance in the actual office the next day. I was hoping that when I opened my eyes in the morning, the weird wobbliness would finally be gone, even though I wished the same wish every night since July 19 when this whole thing started and it hadn’t really happened yet.

The a-ha moment came as I lie in bed that early evening. I thought to myself, “That’s why this disease sucks so much.” I mean, there are a lot of ways in which having MS sucks but the biggest one is that it can (and does) change from day to day. You try to plan a week, but it’s futile. You think a particularly bad relapse is never going to end, especially when it’s your first. You truly believe with all of your heart that it will only get worse. You hit some pretty low lows. Your house, to which you’ve been confined for over two months now, starts to look shabby to you. You look around at your stuff, your precious comforts and you find them old, worn out and pathetic. You see cracks in walls you never noticed before. You wonder how long you’ll be able to live in this house with all of its stupid steps. You tell yourself it’s probably not very long.

Then you open your eyes some random day and boom. It happens.

You feel different. Not run-a-marathon different but can get out of bed and shower different. You manage to put on clothing and makeup and even actual jewelry. You leave the house feeling mortally afraid, but slightly hopeful that maybe you don’t have to be all that scared all of the time anymore. At least you don’t feel exhausted just by walking to the car. You get to the office and gingerly walk the short distance from the parking garage to the office only slightly terrified by the idea of crossing the street. You have a good day. You go home again and head to bed early (it’s now almost your regular bed time). You think about maybe doing it again the next day. Then you do.

The thing that keeps you off balance (pun intended) is that you never know, literally never will know, how long the good lasts before the bad knocks you on your ass again.

You realize that the days of making plans, any plans at all, are pretty much behind you. You realize that there might be really important things happening on one of those surprise bad days and you will be powerless to do a damn thing about that. You have to listen to your body. You can’t push forward when you haven’t the power to stand. You also realize that you can’t really plan little things either (like laundry, flower planting or social activities) because your ability has been changing hour by hour, sometimes minute by minute for months now.

When it’s over, it’s almost as jarring as it was when the whole relapse thing started!

You’re suspicious of how you feel. You feel good(ish) but are afraid to trust it. You want to feel optimistic and roll with it but what if it goes away before you actually make it to your office in one piece? You can’t trust your own body when it’s fundamentally not trustworthy, when crazy things like the damn weather can turn everything upside down in minutes.

Somehow, one decent day turns into three decent days and before you know it, the weather breaks and it’s almost a week. Is it really over?

Back to the explanation of my headline for this post. One of my favorite books by one of my favorite authors is The Hotel New Hampshire by John Irving. It’s a Dickens-like epic tale about the Berry family and their adventures (mostly maudlin, tragic misadventures) growing up in hotels, following their patriarch Win Berry who is the very embodiment of the word “dreamer.”

According to the New York Times review back in 1981, the major theme of Irving’s book was simple:

”The way the world worked – which was badly – was just a strong incentive to live purposefully, and to be determined about living well.” All the noisy slapstick, then, is Irving’s way of domesticating the malevolent vicissitudes of life.

The book can be read as a tragedy but it has an infectious hope throughout that refuses to let the maudlin, randomness of life ruin the Berry clan. Well. Not all of them anyway.

One of the kids, Lily, is small. She stops growing around 6 years old and never starts again. She is daunted by life as a person so small who feels things so very large. One of her brothers describes the sound of her crying to be the very sound of anguish, pain beyond pain, a gigantic wail that comes from the tiniest of bodies.

The children are told a story about a street clown named the King of Mice, who jumps out a window to his death one day after despair got the best of him. On a box containing his pets that was left behind are the words “Life is serious, but art is fun.”

Win Berry and his brood take the story to heart and remind each other to “keep passing the open windows” when they go through the sad, crazy, painful or unimaginable things that all families go through. They keep passing the open windows. It’s almost a family motto of sorts. Until one day many years later once Lily has grown to be a successful best-selling author, she finds herself in a terrible bout of writer’s block. She feels pressured to live up to her early success. In the end, Lily kills herself by (of course) jumping out a window. Her suicide note reads, “Sorry. Just not big enough.”

I don’t tell you this story to freak you out or to make you think that I’ve ever considered not passing my own open windows throughout life. The thought hadn’t occurred to me ever before. It hasn’t seriously occurred to me even now, but when you’re in the thick of a downward spiral that you’ve never experienced before that seems to have no bottom, you find yourself having some pretty scary thoughts. What if I can’t do this? That might be the scariest one of all.

I think the lesson of this relapse, now that I hope I can firmly say it is in my rear-view mirror, is that you can’t focus on the pain in any day or even any moment – you have to keep passing the open windows. A relapse hits and life is, indeed, suddenly very serious but you have to find the ability – be it from your faith, your loved ones, your optimism or your stubbornness we all have different ways – to know that it will end and you will feel better someday. Maybe not entirely better. Maybe some of the bad sticks around. But maybe it doesn’t too. You just have to have blind faith. There is literally no other option, lest you start to consider not passing the open windows and that’s just not an option for most of us. There has to be good to come. Even if you can’t see it, feel it or even imagine it.

The cool weather is making me very happy for other reasons too. I drive a convertible. Because of my extreme sensitivity to heat and humidity, I hardly ever drop the top in the summer time. Windows up, air conditioner blaring, that’s how I roll when it’s hot. Now that it’s deliciously cool (finally) I put the top down for my errands yesterday. First, I went to lunch with my mom. Took my nephew to Petco for some supplies for his kitties. And then I went to Target to get some essentials that I’d run out of during the long months of dizzy sickness when driving anywhere wasn’t even an option. It wasn’t until I crawled into bed last night that it hit me.

I did ALL of that in one day. For some of you, that probably doesn’t sound like all that much. To me it felt like a goddamn miracle. I know a lot of you understand that all too well. You’re the ones who I came to for encouragement, perspective, words of wisdom or just some much needed laughs. You’d been there before and you were wise to tell me that it wouldn’t always feel this way. I can’t lie. I didn’t really believe you at the time. I thought you were just being nice.

But I do believe now. We all have to keep passing the open windows. I’m going to remember this first relapse, probably first of many, as a concrete reminder that today is what we have. “Life is serious but art is fun!” Thanks to John Irving for helping me remember that.

My next Ocrevus infusion is on November 6. I’m desperately looking forward to it hoping that this is the one that I walk away from beginning to finally feel better for longer. If it’s not, there’s another one after that. And another one after that. And probably new and different drugs and new and different therapies…the point is, assuming that tomorrow will look a lot like today is never a good thing to think whether today was awesome or horrendous.

This relapse reminded me of that. And why I will continue to keep passing the open windows.

This is a happy post about fear

Sounds like an oxymoron, I realize, to write a happy post about fear. That’s why I’m starting with the good news. I survived! Yet, as I continue to slog my way through what can now officially be termed my first major MS relapse, I’ve been thinking a lot about the mental toll this disease takes on a person.

I’ve never been a fearful person. I used to have a borderline unrealistic perception that I could easily handle anything that was tossed my way. I’m sure this comes from my upbringing. The generally happy world I inhabited wherein I was always encouraged, praised and celebrated for just about any little thing. It served me well as I got older. I was never an excellent student, I hated studying and I really disliked hard work (Hi, 20-year-old me? You shoulda tried a little harder).

But even my stunning mediocrity as a student didn’t appear to hold me back all that much. I worked hard (though I hated it), got the internships, got the jobs and I was on my way.

Fear had never been a major factor in my life until the first really bad thing happened to me as an adult, when my very healthy, vibrant and joyful husband died very suddenly when we were both just 30 years old. I was plunged into fear for the first time – and heartbreak, grief, horror and extreme sadness – but it’s the fear I remember feeling first because it was utterly foreign to me.

The things we planned together I would now have to experience alone. The plans we made and big dreams we shared went poof! In a matter of five days where my husband lay unconscious in a sterile Neuro ICU. I remember going home to the house we shared together, our little starter home, and aimlessly walking through the rooms that used to feel so small, almost not big enough for even just the two of us. All of the sudden those rooms seemed enormous.

Maybe it was my youth. Maybe it was pure survival instinct but I put on my ‘I can handle this’ face almost immediately. Oh, I was a hot mess in private, trust this, but I held it together for the outside world. I felt like I had to. There was nothing worse to me at that time than to see the instant looks of sadness, horror and pity that seemed to turn my way the minute I walked into any room. I would always be the tragic girl. I needed to pretend I could handle it. I had to support me now, alone, and I couldn’t fail. I kicked fear to the curb (at least on the outside) and threw myself into my work with a mania I didn’t even know I had in me. I was searching for lost security, a foundation of safety, the means to take care of myself alone, now, because that was what I had.

Since those days, (now almost a shocking 20 years ago), I’ve experienced difficult situations, problems that freaked me out, near disasters and family problems that definitely stretched the limits of my belief in myself, but I never feared I couldn’t handle it, help out or figure out. I’ve always felt capable. I like to fix things. I like to solve problems. I realized somewhere along the way that I had sold myself short in my twenties by allowing myself to believe I wasn’t really all that smart. I finally felt like I could believe it. There was very little I believed I couldn’t do (strictly mentally speaking of course! I would never run marathons or be an elite athlete but hell, I never even wanted to do those things anyway so that was A-OK with me).

More recently, I was reintroduced to Fear with a capital “F” when I got the call about my initial diagnosis of MS. I just sat there looking at my phone thinking…um, what?

What do I even do with this information? If you’ve read any of this blog in the past, you know it wasn’t pretty. I went downhill fairly quickly. My “aggressive” disease resisted treatment. I failed Tysabri. Went through countless rounds of high-dose steroids. Got approved for Ocrevus and had my first full dose in May of this year. Then, promptly rolled into my first grand relapse that knocked me literally on my ass, landed me in the hospital and now that we’re up to date, put me on yet another round of high-dose steroids in a last-ditch effort to get me back on my feet in time for an important meeting.

While all of that was going on, something happened deep inside of me. I became consumed by fear. It felt so foreign to me, that I didn’t even know what to call it at first. I was afraid of stupid things like my clothes not fitting or my face looking odd. I was afraid about big, huge things like what if I can’t work, think or excel in this career I’d spent almost the last 30 years building? What if I could no longer live in my beloved three-story house, my sanctuary I created for myself after my husband died so long ago, the house the one place I felt safe and always comforted?

There were even more giant fears lurking at all times like, what happens when I can’t walk? How will I dial my iPhone if I need help in an emergency? I’ve thrived living alone, blissfully happily for almost 20 years. What if someday I can’t do that anymore?

Those big fears are to be expected. I’d been agonizing about them in the back of my mind for months, maybe years, before my diagnosis put a point on the problem. It was the new fears that hit me after my recent relapse that freaked me out the most.

Little things. Things we all take for granted. I might suddenly not be able to stand up at any given point in time. I was shaky on my feet almost always and liable to fall down at any moment. I would be besieged with sudden and violent urges to vomit – whether or not I happened to be near a proper place to do such a thing (they are limited…trust me).

I was afraid to shower because when I closed my eyes I would immediately lose my equilibrium. I gave up on actual clothes and gave in to a daily wardrobe of pajamas and yoga pants that have never seen the inside of any yoga studio. I was down to showering once a week if I was feeling super lucky. I started to become desperate to get outside of the house.

So, I did. I decided to try and leave the house and made a few appearances at my office which I sorely missed. I’d walk out the front door like it was any other day but it all felt different than I remembered it.

It felt dark, although the sun was shining. It felt foreign even though I’d done this routine every single work day for the last 18 years I’ve lived in this house without even thinking about it. I felt vulnerable. Almost naked. What if there was nothing for me to hold on to? Why did this fucking cane make me feel even more unsteady? What if I couldn’t make it across the street from the parking garage to my office?

Crossing the street is an odd and singular challenge for me now. You have to look both ways then walk straight ahead. It’s one of the first things we’re taught when we’re old enough to walk outside alone. But when I look both ways the whole world starts to spin and I can’t just take a step like a normal person would. I have to regain my balance first and only then can I take a step and Jesus! By that time, I have to look both ways again or risk being mowed down by a bus. I could spend all day standing on the corner of Sixth and William Penn Place.

I was mortally afraid of all of the things out there that could hurt me.

It was all too much. I used all I had in me just to get to the office. There was nothing left of me once I arrived that could be of any use to anyone. I realized I needed to be productive at work. I need to be able to do my job. I can’t do that when I’m not able to think once I arrive. I get paid to think. Thinking is my thing. I was beginning to panic. Again.

Then the vertigo came back with a vengeance, then the sickness and oh, lookie here! My old symptoms are back now too. My dear sweet friends, weakness, debilitating fatigue, constant pain and wonky legs. How nice to see you all again! You bunch of annoying assholes.

A call from The Great Scott, an unprecedented same-day appointment at his request, and another round of high dose steroids…you know the rest.

The steroids are like the best of times and the worst of times for me. I almost instantly feel like myself again. The OLD me, the capable one. The fun one. The girl who can command a room and make people listen to what she has to say. This particular dose came at a really important time because I had a big important meeting, important for me to be physically present, and I was going to be at that meeting come hell or high water. Thanks to Vitamin P, I did it.

Of course, I’m really not the old me anymore, I just felt more like her. Getting dressed nowadays is always a giant challenge. I’d like to thank the folks at Universal Standard for my entirely brand-new wardrobe of stylish yet simple black dresses that I can throw on with zero effort and feel kind of cool. The shoe choice always trips me up – but I had to put aside my paranoia and choose shoes that would be least likely to trip me up (literally) and somehow also looks stylish? I think I achieved one out of two of those requirements because sometimes you really can’t have it all. I got out of the house clean, relatively presentable and feeling pretty good. My walking was shaky but not anything nearly as bad as it had been just the day before.

Getting to the meeting itself involved extensive planning. I couldn’t walk the two blocks from my leased parking spot near my office to my client’s offices. I had to pay to park at the client’s location, choose the closest handicapped parking spot I could find and then navigate the shortest possible distance of non-railing walkways in order to get to the security desk to check in.

On my way to the meeting, though, even though I left my house a full hour in advance to give myself plenty of time to arrive the less than 6 miles I had to travel to accommodate for my slow walking pace, I encountered construction at every turn. I knew I was going to be late. This was not a meeting you show up to late. I started to panic but I knew I just had to get there as quickly as I could so I tried to focus.

I got my handi-spot. Held on to walls to get to the main lobby to head up to the security desk to sign in. Then I remembered the thing I hadn’t accommodated for in my plans.

The escalator from hell that literally seems to move at a clip of at least 55 miles per hour that stood between me and the security desk at the top. I’m guessing this is some kind of purposeful speed setting in order to keep the productive people moving productively through their regular fast-walking, rushing hither and yon professional days.

This was a busy time of day. People were everywhere. I lost at least five more minutes standing there waiting for a path to clear so I could somehow get myself on to this high-velocity beast whilst carrying all of my work tools and myself to the top without falling face first on the grated steps. I have rarely felt that kind of abject horror not caused by scary baby dolls or evil clowns in movies. I was flat out terrified.

I won’t bore you with the details of the meetings themselves but suffice to say, people continue to amaze me on the daily.

The very important people with whom I was meeting know of my situation and were nothing less than incredibly gracious and forgiving of my auspicious and extremely annoying ten-minutes late arrival. My colleague who was running the meeting with me was, as he always is, simply the very best by just jumping in and keeping things rolling and generally being his all-around amazing self.

It hit me then that this feeling I always seem to cling to that I have to carry things all of the time because it’s my job to do so is also kind of bullshit. I’m surrounded by incredibly talented people every day, people I consider friends more than colleagues. They have my back. They literally always have my back. I held it together in the meeting and did my thing the way I always do but I felt a humanity in that room that is sometimes missing from business meetings. I liked it a whole lot.

A planned two-hour meeting turned into a nearly six-hour meeting that required a change of venue within the giant office building but my legs and my friends helped me make it. It was one of those days where you just feel in your element. I felt engaged. I felt excited. I felt like I was on my game for the first time in longer than I care to note here. Even ten minutes late, I felt kind of victorious personally speaking. Another miracle fueled by Vitamin P.

There was one last hiccup. At the end of our meetings, my colleague was staying for more meetings with other clients and I’d have to get back to my car alone. I was riding high by this time and feeling pretty damn good so I declined every offer from my friends & clients for an escort to the parking garage. I assured them I was obviously wearing sensible shoes (wink, wink) and I parked almost directly outside of the elevator door. I was not looking forward to the escalator from hell but I did it once that day, and I just took a deep breath and did it again.

When I got down to the parking garage on the Blue floor, it looked all foreign to me. I couldn’t remember the right way to turn to get to the right door that would plunk me right in front of my car in the handi-spot. Of course, I chose the wrong direction and ended up on the entire other side of the parking structure and had to walk a full 360 around, up and down a few ramps, to finally find my car while toting my giant backpack full of my heavy computer and my ever-present giant bottle of water.

About halfway around the second turn I could feel it rising in my chest. The panic. I had no idea how I could be anywhere near where I was supposed to be because nothing looked familiar and it all kept turning in circles as I walked. I talked to myself as I walked. “Keep going, you’ll get there, you’re doing great, careful now, don’t trip, go slow, you will make it.” And so on and so on until at one point I had this incredible urge to just sit down and cry for a minute until I got myself together. I’m not that person. I don’t sit down in public parking structures to cry. It was at that very moment when I turned another corner and saw my little black car just a short way up another tiny ramp. I almost gasped for joy. I made it!

I sat in the car for a second and just breathed. It wasn’t over yet. I still had follow up work to do when I got home and worked well into the late-night hours to get it done. But thanks to Vitamin P, the decency of other humans and pure strength of will, the fear didn’t win on that day.

I know better than to think it won’t ever win. I’m becoming used to this imposing terrible roommate I’ve acquired recently and I don’t much like him. He pokes me in the ribs as I’m walking out the door and says, “Careful girlie, you don’t wanna take a tumble now do you,” with his evil little laugh. I am resting and working productively from home today to help my body recover. I’m doing what I should be doing, and yet his voice still nags at me.

Yesterday morning I downed my last ten 50mg prednisone dose. Those hideous tasting discs of evil were the last I’d be taking for a while and I hated choking them down not because of how truly horrible they would taste but because now I have no idea how long I have before my body goes wonky again and I remember that I actually really do have MS again.

I’m going to take The Great Scott’s optimism into my heart and believe that my next full dose of Ocrevus in early November might be the one that puts me into remission for a decent length of time, this time.

TGS is so hopeful on my behalf, it seems ungrateful not to support his positive attitude. The Fear can’t have all the fun. I’m going to invite another roommate into our little happy home. I’m going to call her Hope, invite her in and make her a nice comfy spot on the couch.

The Darkest Places (So Far)

In other words, when you get a diagnosis of multiple sclerosis that you weren’t expecting late-ish in life and let those words sink in, you understand viscerally that this is definitely not a good development. Things are about to change from top to bottom and every where in between. You pretty much get that from the very beginning (for me, early December 2015). You have to tell people who love you, first. Those are dark days indeed.

As you read and do some early research and find some voices you rely on for reliable information you feel yourself wanting to be hopeful, wanting all of those voices to be true. The voices of the Societies and Foundations and all the rest. This whole MS thing will be bad for a good long while, but it WILL get better. You will find your legs (bad choice of words or the perfect set of words. Depends on how you look at it). Just believe it. Hang in there. MS doesn’t have you!

The lazy writer in me wants to use the eye roll emoji in this post at this particular juncture. You get on that “MS doesn’t have me bus” and you listen to friends tell you stories about their friends (or friends of friends sister’s aunt twice removed) and she runs marathons with MS. Surely you can do that too! Chin up, buttercup. Better days are on the way.

And I do know there are better days on the way. Currently, better days are in speedy delivery mode as I choked down the most bitter giant 10 chalky tablets of prednisone ever made this evening after a command performance today with The Great Scott.

When TGS calls you and says be here at 1:40PM well…you put on your best black yoga pants/tank top combination. You have 75 identical versions of each so it’s a complex decision making process. You run your lint roller over your freshly laundered daily uniform because with four felines running around, and over, every surface of every item in my home that I’ve not left all that much in the last 6 or so weeks, you can’t be too careful. You don’t want TGS thinking you’re that cat lady (even though you are much much worse than that cat lady…he doesn’t need to know that). You pop an antivert and you get your growing behind off the couch to see the wizard.

And that is exactly what I did.

The Great One himself had two new students, Kyle and another Samir but not the same Samir from the last time. This Samir had some shiny and very voluminous black hair styled in a casual, not-over-done hipster doctor pompadour. It was really something. I’m a hair girl! I can’t help it. Kyle didn’t have a chance. I was covetous of Samir’s hair. Samir’s hair should have an Instagram account because MS’ers all over would follow him.

When Samir was doing my visual fields test and I had to stare at his fingertip and at his nose over and over again, I kept finding myself staring at his hair and he would say, “Down here, Maribeth” and I definitely blushed.

But I digress. After we went through the whole visual field song and dance again, twice, with each student, TGS talks to all of us as if we’re buddies. I think I’m officially one of them, now, based purely on the volume of times I’ve had to be in there in the last 6 months. He asked Kyle what we learn from the visual field test (the whole follow my finger, look at my nose routine). It was almost like TGS knew I was about to blurt out the answer and he look at me and silently shook his head ever so subtly, “Don’t.” (So I didn’t.)

Poor Kyle whiffed on both of his quiz questions. The other one was, “Can you tell me what other drugs beyond meclazine we sometimes use to manage vertigo caused by brain lesions Kyle?” I knew! I’ve been a vertigo researching fool these past 6 weeks or so. I KNOW THIS ONE TOO…I got the look again. I kept my mouth shut, again.

TGS is not pleased that his students appear to be dullards on this subject. Kyle actually stuttered. Poor Kyle.

“Sometimes we use benzos for this reason and we’re going to try that here to help Maribeth out. Also, Maribeth, this drug may kill two birds with one stone because I’m putting you on another course of high dose steroids starting today,” deadpanned The Most Great of all Scotts.

NOOOOOOoooooooooooooooOOOOOOOoooooooo!

“Ugh.” I actually said this. “Isn’t there any other option? I mean MORE steroids? I’m kind of tired of the steroid effect TGS. I just am. I know that makes me a shallow asshole but there has to be another option.”

“Well, there’s plasma replacement blah-blahtity-blah but that is an in-patient experience, is not likely to work and is really a terrible idea so we can probably agree not to go there, can’t we? You have an aggressive disease. A lot more aggressive than we thought. You like being aggressive in treatment, right? We need to give you a chance. This should help you over this hump until your next Ocrevus infusion in early November. I’m still hopeful this drug is going to be right for you, Maribeth. But you do have me re-thinking the two month flush for patients like you. I may be changing my mind on the necessity of things getting this bad before they get better.”

He has a point. I’m nothing if not aggressive.

I do the walking tests. He continues to be concerned that I am back to pre-Tysabri levels of impairment (old symptoms have come back with a vengeance). Couple that with the vertigo that just won’t quit and he’s pretty sure I can cancel my appointment with the Hearing & Balance Center. (I’m kind of bummed. I was planning to go in costume since it’s kind of close to Halloween. I was going to dress up as a crazy old woman with a broken brain who’s lost her damn mind.) So, no Halloween fun for BethyBright. Boo.

I look down. I know I am beaten. He’s not called The Great Scott for nothing. I’ll take the fucking steroids.

Here’s the thing. I know some of you get this because you have been there. Hell. You might be there right now. You know what I mean. It’s a period of time so bad that weird shit starts to happen to you inside of your broken brain. You have thoughts that people like you just don’t usually have. You think to yourself, as you consider these random scary thoughts, “Huh. I don’t normally think things like this.” That’s another concerning relapse-associated “symptom” that the docs don’t talk much about.

You find yourself mildly afraid to leave the house. The outside world starts to represent potential injury and/or embarrassment or both, so you find yourself not wanting to go out there. At all. Ever. But staying in here? That’s another story entirely.

Staying in here is where it’s relatively safe (at least you can puke in private?). But staying in here sends a girl down some dark rabbit holes…

  • What did I do to deserve this? What am I being punished for? (I have some ideas, but I thought I was over all of that. Guess I’m not.)
  • Why do I live in this house that means I need help to do the most basic stuff? Why do I deserve to live in this happy place with so much freaking STUFF? I should give away all of this cursed stuff. We’re all under the same evil eye, my stuff and me. It should go, too. It’s cursed. I am cursed. We should all GO.
  • Why do I have so many damn cats? Why do they need so so much? I should never have been optimistic enough to get all of these needy, bitchy creatures. I should have known it would all go to shit! It usually does. Literally. Then I’ll need even MORE help to carry that shit out of the damn cursed house.
  • Why would anyone want to talk to me now? This utter nightmare is the ONLY thing I ever think about, let alone talk about. When I talk about it to my visitors, those kind enough to come to me for human contact, I find myself on my own damn nerves. There just isn’t a way to sugar coat any of this. I know if the tables were turned I’d leave your house feeling sadder than sad because we used to have so many other, more pleasant things to talk about. Now I have this. Only. This.
  • I’m alone. I rely on the graciousness of others. This is my reality. I am blessed (#blessed – few things irritate me more than #blessed I’m not entirely sure why but every time I see it, it sounds ironic to me). I have so many friends, family and buddies who help me in so many ways because they love me. Hell. They even help me by just giving me tiny little happy surprises! Like the card last week that I needed at just the right moment. But really how long can any of this last? People WILL get sick of me not getting better. It’s just inevitable. I’m so needy that there isn’t any realistic number of humans on the planet to fulfill all of my damn needs. It’s just not physically possible. I mean I am with me all of the time and I’m sick of me not getting better. What happens when I get worse? Or when I get MUCH worse…I can’t really think about that for very long or I go to darker places still.
  • Are there darker places than this? Oh I know there are. I have a feeling I might visit them before this is all over

I may have seriously entertained not taking the damn steroids. I definitely considered it, I may have come close to skipping my stop at the pharmacy. I’m so tired of all of the stupid side effects of fucking steroids! Why do I have to have a disease that makes me LOOK bad too. Why couldn’t I get a disease that makes you look scarily thin? Trust me. I know. These are idiotic, stupid pointedly indulgent obnoxious thoughts. I thought these idiotic thoughts the whole way home from seeing TGS.

Then I thought about how I had a virtual anxiety attack over leaving my house today. I have never had a true anxiety problem in my life. Other problems, sure, but not anxiety. And how doing basic chores has me so exhausted that I think my entire life is going to feel this way. For all time. Forever and ever until I just give up and stop, stop doing all the things let it all go to shit and just sleep. Because I am alone I am and will always be…This, my therapy loving friends is what my precious Cheryl would call “catastrophic thinking.”

Then it hit me. Out of the blue in full-on pedal to the medal on my way to Catastrophy USA, I finally got my head straight. Like BOOM.

The disease is talking right now. Not me. The disease is talking stupid because it wants to win. Its only reason to exist is to ruin me. It wants me to be depressed, full of newfound anxiety, falling apart at the seams. It wants me to hate on this body it wants to feed on because it makes the whole process so much easier, more easily digestible. Like tenderizing meat before you cook it. Those are NOT my thoughts.

When I feel better, my thoughts will be my thoughts again.

I took the damn first dose of bitter pills. They won’t be my last. I need to accept this and I have. I’ll eat sensibly and try not to go on an ice cream binge (prednisone needs no assistance in achieving maximum bloat) but I will have a couple of spoonfuls every now and then if it will give me some much needed joy.

It gets really dark in this world. Scary thoughts can kick you right in the gut and have you questioning your sanity. Your fundamental worth. Then you get to that point where you start to realize that maybe a nice gentle marinade would be ever so much more appealing on the meat than all of that beating it with a spiky metal mallet has been.

(I know at least one of my blog followers read that last paragraph and giggled thinking, “She said beat the meat! Hee Hee.” You know who you are!)

I’m going to marinade in some prednisone and some calming benzos and let this thing ride. Cliches are a thing because most of a time, they have more than a little nugget of truth inside.

And you know when they say it’s always the darkest.

The spaces in between might be the hardest

The bright…and the dark. I guess this post is mostly the latter.

Nah. That’s probably somewhat of an overstatement but it keeps occurring to me, in the last week or so, as I wait and rest and do everything I am told I should be doing to help myself get back to non-nauseous living that the spaces in between are the things we never talk about. I’ve avoided writing this post all weekend because I don’t find it very interesting reading, let alone writing.

When you have a flare or are in the thick of a relapse there’s something inherently interesting about that, even if you’re the patient. There are problems to solve. A thing that must be dealt with. Procedures to consider. Drugs to take. Hospitals to escape from. Information to share. All very interesting things to write about should you happen to be a blogger who writes about your life with multiple sclerosis. But once all of that excitement is over, there’s the rest.

The in between stuff is what really sucks because it’s really a whole lot of minutes that turn into hours that turn into weeks and then suddenly it’s been a month since the whole drama started that are full of a whole lot of nothing at all. All of the rest.

You fill the moments with email and conference calls and Law & Order reruns running in the background and talking to friends and being occasionally visited by co-workers, friends and family. You walk around your house seeing corners and details you never knew were there. But you don’t walk too much because you have to conserve your energy for exciting things like cat feeding and litter scooping before your energy runs out. You can’t quit doing those things because you are already so very weak! You need your “exercise” even if it’s just a few flights of steps in a day. You can’t give up your special work outs!

The days look alike because you’re wearing the same clothes (sometimes clean versions, sometimes not because laundry is suddenly like an Olympic sport) and you’re looking at the same face without makeup and without clean hair. The days go by and the nights get longer because even doing the very small things you are able to do leaves you physically exhausted and likely to be happily in bed before the sun goes down.

You read to keep yourself from thinking. So, you read a lot. You read so much you’re on book number 23 of 2017 and there’s no end in sight. You might break your personal annual book record. When you get tired of reading, you write. You write to help get bad thoughts out of your head and into the journal where they can fester without directly threatening your sanity. You journal about the things you could never write about on your blog. People would worry. You can’t have people worrying.

You are always waiting. The days and nights are chock full ‘o waiting.

You go to bed each night wishing and asking the universe to make tomorrow the day when you finally wake up feeling normal again. You get pissed off after you take a short trip outside and realize that the very most minimum of moving about in the outside world leaves you dizzy and eventually heaving into a portable puke bag that you stole from the hospital (I’m very slick like that). Every morning offers new hope of possible normalcy that is usually dashed by around 3PM when you frantically rinse out the stolen puke bag because you never really believed you would need so many of those damn things so you only stole a few.

Other moments are full of experimenting with medicines because in all of your alone time you’ve convinced yourself that you can manage this entire stupid situation if only you could figure out the right cocktail and timing for said cocktail. The drugs that help with the dizziness don’t help enough to make up for the horrible tiredness that they cause. The nausea drug added to that makes for an instant torpor that makes leaving the house out of the question. You aren’t sick when you take the drugs, but you are also pretty much a zombie and you need to function well enough to have all of those conference calls.

You begin to feel like a prisoner in your home. You convince yourself that mind over matter works with brain diseases and then you find out violently that you are terribly wrong. When you move around too much, you get nauseous. When you get nauseous you get sick. Repeat.

Yesterday I drove. My brother was my co-pilot for safety’s sake. I did OK. I walked around quite a bit. I didn’t feel dizzy. It was my experiment to see how I might get through a day should I decide to finally give in and make it into my office this week. I was initially jubilant because I felt like it was a good experiment. I got a little bit hopeful that I had finally come to be outside world friendly! I might be able to leave the house. In clothing that isn’t clothing I could and do sleep in.

Then around 4PM the dizzies hit. I was feeling very worn out. Food wasn’t even an option because my stomach was roiling. I desperately stumbled around the house looking for the clean, recently rinsed out puke bag and gagged into it for what felt like the millionth time in the last three weeks. Or has it been four weeks already? I think it’s been four weeks.

Going to my office involves a few really minor actions. Minor if you are a normal. I have to get dressed. I have to pack up my bag and get my computer in my backpack and get from my house to the car, from my car to my office and back again at the end of the day.

The thing is, before any of that happens I will have done two set of stairs down and two sets of stairs back up to my dressing room after doing my cat chores. So I’m already going to be worn out. Crazy, right? But even knowing that, I’m almost sure I could make it to my car once dressed without using one of my special portable puke bags.

But what happens once I get there? I’d have to walk from my car and into the office which involves actually going outside, carrying that backpack that holds my computer and my giant bottle of water, and probably using Stan, my new cane, to help make sure I actually make it from the parking garage to the building just across the street.

I’m not sure how long it would be that I was actually IN the office before I’d be desperately heaving into a portable bag but this time in public with people all around me. I mean, randomly pulling out a bright green plastic bag and hurling your guts into it at random intervals is often considered anti-social behavior in polite company.  Many of my closest work colleagues are traveling next week (to meetings I should be traveling to along with them but of course that’s impossible because I can barely drive or walk let alone fly) so I’d be forced to impose myself on people who maybe don’t know me as well or who I might not feel as comfortable with asking to hold my puke bag for me, ya know?

It’s also still hot here in Pittsburgh. Above 80 degrees hot and that, on top of all of the little things that are involved with getting me from point A to point B is the perfect combination of factors to ensure that this imagined scenario will play out exactly as I’ve described here. I know the weather for the next week promises some relief from the heat and humidity so maybe I could plan my week around that to give myself more of a chance of success. I am an obsessive user of any and all weather apps that help me plan out days when I am less likely to feel like shit on a shingle. This is also completely normal to me. This obsessive weather watching.

Guess what? All of this thinking and planning and strategizing has me exhausted again. It’s only 4:20PM and way too early for getting back into the bed that I just dragged myself out of at 12:30PM.

There will be more waiting. More days of wearing lounge wear and sporting bed head as I take conference calls and respond to email. More days of being annoyed by my cats who I really love a lot but whom I’m not accustomed to spending quite this much time among. They are needy little jerks. Sometimes I forget I love them. Then I remember and I feel guilty.

This is all to say that when you have so much time to just wait and think and do nothing much at all you get a little overwhelmed with the idea of making your life even a little bit more complicated by trying to accomplish any of it in the outside world.

My new plan is to wait until Wednesday to head to the office. It’s cleaning lady day. I need to vacate the premises. It’s supposed to be cooler and not as humid by Wednesday. Another good sign. Maybe a few more days of resting and sleeping and waiting and nothingness will leave me feeling almost human by Wednesday! I can hope. I never stop hoping.

The image above is a self portrait I did probably ten years ago before all of this insanity started. I used to paint with oils. I used to love painting but I can’t really do that anymore because I don’t have a studio in the house where I can shut out the kitties from chemicals that could harm them. I used to paint on my front porch which involved carrying my easel, my canvas and my paints outside and then back in again once I was done for the day. I keep my painting supplies in the basement out of kitty reach. More steps. I haven’t painted anything in a really long time probably all because of those steps and that carrying and my literal lack of energy for anything other than trying to live the most basic kind of life.

The moments in between are when you start resenting the hell out of things like that. That’s why you don’t like writing about them. The moments in between are the things you would really like to forget but you cannot because there are so damn many of them!

I’m told it won’t always be like this. I believe that, I really do. But it doesn’t make you any less pissed off in those many moments in between. You’re only human and so am I.

The most important rule of MS Club

I almost hesitate to say this out loud (or in writing, which is the same thing, really, maybe even worse)…but I’ve been feeling a little better these last few days. Not “jump out of bed and run a marathon” better. Not “these boots are made for walking” better. Nothing quite like that.

Just not quite so bad, better. I took a shower yesterday. I didn’t feel like I was going to perish. I didn’t have to take a nap after my shower. Also, I woke up several days in a row without the aid of an alarm while it was actually still morning. I was on “vacation” from work last week so I had the luxury of not setting an alarm. Even so, I found myself awake and quasi-mobile well before noon. Imagine! Also, I noticed last week that I haven’t been eating Ibruprofen like skittles.

Strange things are afoot.

Do you know what happens when you’ve felt like utter excrement for so long and you start to feel even a teeny tiny bit better? You want to do ALL OF THE THINGS. ALL. OF. THE. THINGS. Every last one of the things. But then you remember that you’re a member of MS Club.

The Most Important Rule of MS Club is you need to never forget that you’re in MS Club.

This means something pretty simple. Definitely do NOT give in to the urge to believe you can suddenly do all of the things. And for the love of god, don’t try to do even two of the things at the same time on the same day. Just ease on into the whole not feeling like death warmed over thing and take it slow. Very, very slowly. Do not push yourself to pre-MS levels of expectation thinking some crazy ass miracle has occurred.

Just pump your brakes and take it slow.

Go to bed early after a long day in the office (I wore makeup and clothing and walked to and from my office without falling and omg it was awesome).

Do not stay up late writing all of the blog posts that have been swimming around in your broken brain for days now. Just jot down some ideas so you don’t forget what they were and then GO TO SLEEP. You need to work again tomorrow.

In that spirit, following are some of the blog posts I want to write but will not write on this night because I am a responsible adult with Multiple Sclerosis. Consider it a kind of “coming attractions” preview:

– Is it MS? Or is it middle age? An exploration of the age old answers to the burning question: what is really happening to me?!?

– Not all Flat Shoes are Created Equal: an exhaustive treatise on why flat black sandals can be almost as bad as four inch heels.

– How many days can one stay inside one’s home with the air set at 64 degrees before one is officially considered a shut in?

– Cane/hiking poles/rollator…which MS mobility aid will I be least likely to injure myself using and how does one decide?

– When your doctor cancels your appointment without explanation is it ok to send them a bill for your pain and suffering? And other MS Specialist dilemmas.

– What does “feeling better” really mean? Better than what? An existential debate.

– Witty replies to the question, “how are you?” That are not instant conversation killers.

…these and many more intriguing topics will be explored in future episodes of bethybrightanddark.com.

But they will not be written on this night. On this night I’m going to allow myself to read one chapter of my book before I close my eyes. I’m going to attempt to get a good solid eight to ten hours of sleep. Then I’m going to try to wake up tomorrow, put on suitable outdoor appropriate clothing, drive to my office downtown and attempt to do it all over again. Two days in a row!

Ideally, I will accomplish all of this while also making a better shoe choice than I made today. It’s gonna be awesome.