When everyone else seems to be drinking lemonade.

I’m a member of many Facebook groups dedicated to the transition to the new goo, Ocrevus, because I was looking for any information at all from any source at all about what to expect from the very, very new disease modifyer.

Protocol seemed to be all over the place. Some people were forced to do the 60-day flush (like me), others were told to start the new goo immediately without a wash out.

Initially most of the posts were about what to expect during the infusion. I guess because I had been on Tysabri for 15 months before the transition, I wasn’t all that concerned about the infusion experience itself. I knew to expect it to take longer. I knew I would get Benedryl and Solumedrol prior to the new goo. I was fully prepared for the experience. I trust my infusion nurses. I was looking forward to seeing them, really.

What I was jonesing for in my social media trolling, were stories of how people felt after getting their first full dose. I was dying for any reason at all to feel optimistic. I needed to believe I could eventually feel better, that these persisting and worsening symptoms I was experiencing since the two month flush began would eventually get better. I wanted to believe, very badly, that I would get better. I’d heard stories. I’d heard people say they felt better almost immediately. I wanted to hear more of those stories and get an idea of what was really possible related to the very mysterious new goo that nobody seems to know very much about.

The two month flush was not a good thing for me. I got to the point where I was before I started any treatment at all. I could barely walk. I wanted to sleep 24 hours a day. The heat paralyzed me. After taking a bit of a nose dive that felt very relapse-like, The Great Scott put me on a three-day course of high-dose Prednisone. That was after my second 1/2 dose of the new goo. I was starting to panic. I really needed to feel better and I just kept feeling worse. I swallowed those bitter (literally) pills by the handful with joy because I was that desperate to feel better.

The Facebook groups that I joined to get information from other patients started to have the opposite of my intended effect, though.

In short, they really started to piss me off. Post after post of “I can walk again!” Post after post of people writing about regaining use of formerly useless limbs. Some no longer using previously necessary walking aids. Their hands and feet were no longer numb. Their vision was coming back in their eye they had trouble with for years.

People were feeling fan-freaking-tastic all over the internet and I’m over here taking a slow, infuriating nose dive into becoming a hermit who can’t walk more than a block because of the incredible weakness in my lower body.

I have new symptoms I didn’t even have before! I have trouble lifting my legs now. It used to be only my right leg, but then it was also my left. Putting on underwear, shoes and pants required sitting or holding on to something with one hand. My problem with my legs isn’t the mechanism of walking (this is kind of complicated) but I don’t have the feeling I used to have of my legs not knowing what to do when my brain told them to walk. Ampyra really helps me with that problem. It still does. My new problem is overwhelming weakness. My legs feel like they could go out from under me at any minute. I walk more like a drunk than I used to before the two month flush. I find myself holding on to walls, telephone poles and random strangers. I’ve finally opened my mind to the idea of getting a cane. It’s that bad.

The most noticeable new/old symptom I’m experiencing is pain – overwhelming pain in my back that makes me feel like I can’t stand up for longer than 10 minutes. I never thought Tysabri did much for me, but it must have been doing more than I thought because I haven’t had pain like this in a very long time. It’s what makes me need to lay down in the middle of sheet changing. It’s what makes standing up and socializing at a party virtually impossible. It’s what makes Ibuprofen qualify as one of my major food groups.

The steroids made me feel better for about ten minutes but then left behind their usual pleasantries – moon face, apple belly and camel hump. Yeah. You read that right. In my research about how long my post-steroid uglies might last, I found out that Prednisone at very high doses not only makes your face look like a giant pie, but it also contributes to the redistribution of fat in your body (hence the “apple” belly and camel hump at the top of your back).

I mean. If you know me in real life, you already know about my obsession with my hump. I could talk about it here, but suffice to say it’s a form of insanity resulting from a life-long posture problem and a collarbone not quite set properly from a childhood accident that leaves me with a sort of hump-like thing at the top of my back behind my neck. Most people who know me will tell you they think I’m insane. They will tell you they can’t see my hump. They are liars.

You might also already know that having a quasi-flat stomach was kind of my only feature I could generally embrace. I’m a hippy Italian woman. I have always been “thick” as the kids call it. But thanks to never having giving birth, and some good luck, I never really had a gut. I never had wash-board abs or anything even close, don’t get it twisted, but my entire wardrobe is built around not having a giant belly. That wardrobe is rather useless right now.

You might be laughing at the irony of how these particular side-effects would be so terribly bothersome for me. I’m eating vegetables and drinking water and doing all the things they say you should do…to no avail. I still have all three…the Prednisone trifecta of things to make me more miserable. The damn steroids didn’t even make me feel better long enough to make any of this even close to worth it.

I would tell you these things no longer matter to the newly not-vain me, but they do. I still hate that I can’t just throw on clothes and feel OK without thinking about it all that much. I still hate that my face looks like a puffy, giant, squirrel with cheeks full of nuts.

I really hate that my other more valid and important symptoms do not appear to be getting any better. Newly Nice Nurse Carol advised patience. She taught me about cytokines and what happens when you kill a lot of B cells in your body all at once (that would be a whole lot of inflammation). She advised me not to lose hope when I’m not immediately feeling all miraculously cured. She and TGS both believe if I give this time, this drug will help me.

I want them to be right. But patience is not my best quality either. Reading about so many people who feel so much better almost immediately almost makes me angry. It makes the following words swim around in my brain at the most inopportune times…

“What is wrong with me? Why can’t it work for me, too?”

I’m not giving up on the big O. I’m not throwing in the towel and accepting drunk walking as my new normal just yet. But damn. A little relief somewhere would be most welcome about now. I want to be one of those miracle post-ers! I don’t want to be mad at them. I want to share in their glee. I want to BE one of them.

This is to say that all of this just leaves me feeling like a bad person who can’t muster joy in her heart for others who are doing better than me. It makes me feel like I’m the only MS’er out here who has been given lemons but has not figured out just yet how to make the damn MS lemonade.

I’m more like sucking on lemons and feeling the heart burn and making funny puckery looks with my moon face all the while trying to hold my life together in some tiny semblance of what it used to be.

I think I’m starting to understand why people of faith benefit from their belief. It gives them something to hold on to when there’s not much left in this world to grasp. It gives them a way to keep believing in good and not giving in to their baser instincts. I am not a person of much faith. I guess life has shown me a few too many things that have led me to question the whole “benevolent master ruler who keeps us safe and happy” thing. But anymore, I get it. I find myself asking someone, (I’m not sure who, the universe maybe? The great goddess in the sky? The hippie Jesus I learned about in Catholic school in the 70’s?), I find myself asking something, anything, whatever it is, to give me the strength to not be discouraged by the good fortune of others. I find myself asking it to help me look at my moon face and say “You’re ok, kid, it was only a face. It’s not who you are. It never was.”

Don’t get me wrong. I know I am nowhere near as bad off as many of my fellow MS’ers. I still have so many things to be grateful for. I still haven’t had to have any discussions about catheters or wheel chairs and this in and of itself is evidence of how grateful I should be feeling. I still have a job that I’m still pretty good at!

I will be grateful. I will figure it out, eventually. I will remember how to make lemonade. Then maybe I will invite you to my chilly house to drink some, mixed with some raspberry vodka, to celebrate my discovery.

My new quest, my new thing to learn, is that life is not a competition. Having a chronic, degenerative disease is not a thing you can win. I might not see it, but we’re all dealing with something and you can bet it’s not something super fun. Being someone with a generally invisible disease, I should know this better than most. How could I have forgotten?

This good things that some of my fellow MS’ers are experiencing and posting all over Facebook about might be the first good things they’ve had in 20 or 30 years! I can see my silver lining immediately. I wasn’t diagnosed when I was young. I have done a lot. I’ve lived a lot and seen a lot before this hideous mystery took up residence in my central nervous system. I can still walk! Maybe it looks funny, but I can do it.

I’m only a year and a half old in MS-years. I’ve got a long road ahead of me. I better find that lemonade recipe fast. Anyone have Beyonce’s number?

 

Another day…another missive from The Great Scott

Last time, on bethybrightanddark.com, we found our heroine in some distress.

After a two month flush without meds, and the long awaited first dose of the new goo (aka Ocrevus), Bethybright was getting darker by the day. Body parts had stopped working as they should work. Pain was a constant companion. There’d been shaky legs, heavy legs and legs that didn’t really work like legs. There was some serious relapsing going on up in there at a terrible time for our heroine.

After another round of high-dose prednisone, with a face the size of the man on the moon, our heroine had one of the single worst days of her professional career on a day that should have been one of her best.

Poor Bethybright. She found herself dangling at the end of a very thin, very frayed rope and about to give up and let go (into bed, but that sentence felt more dramatic without that part).

In her anguish and professional shame, late at night while she lay in bed, Bethybright penned a lengthy email to The Great and Powerful Scott begging him for direction.

Dear TGS:

How could I keep getting worse? Was something terribly wrong? Did I need more steroids but what about my poor face and the fact that they didn’t really work last week? Is it time for me to give in and get a cane? See, calling on friends to walk you from the parking garage to your office and back again is somewhat impractical even when you have fantastic friends. Did I need a fallback plan until this new goo, which I’m starting to lose faith in, starts to kick in? I can’t just stay home until I can walk again, right? HELP ME TGS! HELP!

Signed,

BethyDesperatelyDark and Getting Darker

 

I waited for two days. Nothing. I called and left an irritated message. Nothing. I uttered the unspeakable words to my precious (aka Cheryl my therapist), “I feel like I need to start thinking about a new doctor.” And we both blanched and shook our heads violently, no, anything but that. Once you get to The Great Scott you don’t break up with HIM. You just don’t. It’s because of him that I got to be one of the first patients to get the new goo. He’s the man. He’s one of two men, really, but the other one is at UMPC and I can’t go there in-network, so TGS is the only man for me if I don’t want to go bankrupt. I knew I wasn’t ready to walk away. I began to hate him for it.

Three days later he called me. THREE DAYS.

“Maribeth, it’s Dr. Scott. Well, Maribeth, you fell off my to-do list last night and you are probably very irritated with me. I’m about to leave for a three week vacation, it’s a bit hectic here, but I want to get you settled before I leave. Please call Lisa in my office, she can talk you through some options. I apologize for my tardy response.”

He called me at like 9am, of course I missed the damn call. I was neck deep in conference calls at that time. But at my first break, I called Lisa and Lisa wins the prize for the most helpful member of the TGS team of not-so-great support staff. She was wonderful actually.

He gave me some options. He offered more steroids (I took a hard pass…not worth it, not even close to worth it). He said he’s gotten some anecdotal feedback that some patients who’ve slipped into relapse while on the two-month-flush have taken a little longer to start to see benefits from the new goo, but he still thinks it’s going to work for me.

He said he would support whatever I wanted to do. Steroids. Or wait it out. I decided to wait it out. But while I’m waiting, he’s sending me a scrip for physical therapy. This way, a therapist can help me determine if a walking aid would be helpful for me for the especially bad days.

I just said I might be getting a walking aid.

We’re not going to get into the fact that I just admitted for the first time that I need help walking on really bad days. It’s not a walking problem really – Ampyra helps my legs get the signals they need for walking almost properly. The challenge with my legs is that they are so weak that they threaten to go out from under me at any given, random moment. Part of the reason why the damn party was so incredibly hard for me was this issue with my ability to stay on my feet. It’s not so great right now.

But hey. If it’s going to take a while for the new goo to work it’s magic, a temporary cane is OK with me. It’s much more OK with me than rolling around on Sixth Avenue while attempting to walk into my office. That I am decidedly not OK with.

We’ll see. If I get a cane, I’m going to give it a name. I will know what it is when I see him. I already know it’s going to be a he.

I almost hate to say this, because it changes by the day, but I think I might be feeling a little bit better today. Ever. So. Slightly.

How do I know this, you ask? Well, I took a shower and didn’t feel like I was about to perish halfway through shaving my second useless leg. I’m also finding steps not quite so daunting today. I’m thinking about changing the sheets on my bed! If I have to lay down halfway through that chore, we will know I am full of crap and I don’t feel better at all. But at least I feel like TRYING.

Trying to try is a thing. I keep remembering that. I have to keep trying to try.

On our next episode, our heroine will attempt to make it into the office and do actual work in said office instead of in her living room. News at eleven.

From the archives…MS Memories

My bitmoji is much cooler and more “able’ than the real me.
Before I started this blog, I used to get my MS-related ya-yas out on my personal Facebook page. I’m not sure why sharing feelings in a social media forum about being diagnosed with a disease like this helped me at all, but it did. I think it gave me a way to share some of what I was going through in a broader way so that maybe when I actually saw people in real live person, I wouldn’t have to explain what my life is like now. How dramatically things can change in just a few months. Or minutes, as the case may be. I hate answering the question we almost always get asked first in conversation…that would be, “How are you doing?”

Thanks to Facebook Memories, some old posts pop up every now and then that help me remember how far I’ve come. Some of them make me realize, at the very same time, how much things never change.  It’s a strange oxymoron.

This post marked my 6 month diagnosis anniversary. It felt timely so I’m sharing it here, again, pun fully intended:

It’s worth stating that I’ve just passed the 6 month mark post-MS diagnosis.

I’ve learned a ton in that time and experienced a whole new world of medical jargon, research, endless needles and insurance rules. I’ve learned about how MS works, what treatment options exist today, what potential treatment options are on the horizon and much about how other people deal with the daily task of living with multiple sclerosis. I’ve read so many things that have helped me so much! But none of those things really prepared me for the basic change in how I now perceive time.

Time is a funny thing.

When we’re young we seem to have more of it than we can fill with activity and discovery. As we get older, it gets more elusive. There’s more pressure to fill your given hours in pursuits worthy of what little hours you could have left as life starts to feel not that lengthy after all. But lately, thanks to this summertime heat and humidity and the basic reality of living with this disease, a day just simply isn’t long enough anymore.

In fact, based on the reality of my sheer need for sleep, I’d like an additional 8 to 10 hours in a day. If I had 32 or 34 hours to work with in a day, it would be far more likely that I could rest as much as my body seems to want between each minor daily task and still not feel like I am somehow failing at life.

I could sleep in later in the morning and not feel like I was somehow short changing my co-workers or shirking my “important” duties. I could go back to sleep on the days I really need to without that guilt and fear that I was letting someone or something down. I could wake up knowing that there was plenty of time to get things done at a manageable, leisurely pace!

I could take my time making my ever more complicated meals and then eating said meals and then digesting said meals (you’d be surprised – or maybe you wouldn’t – what subsisting on 9 cups of mostly vegetables each day does to your body. Not all of it is pleasant). I could take the time necessary for preparation and shopping trips, because of course an extra 8 hours in a day would mean it would be much easier to space out trips to the grocery store among the other errands and chores a regular life requires. Like showering. For example.

I could plan necessary chores for times of the day when I am most capable and likely to manage best. Like, say, I could do the laundry when I can’t sleep at night because I could use those extra 8 hours I’d have in a day to sleep when I need to sleep and not fall behind. I could go for a walk when it’s dark out and not as god-awful hot. I could go to the pool at night when the mere thought of walking to the actual water from the parking lot in the blaring sun doesn’t ruin the whole idea of going in the first place.

With an extra 8 hours in a day I could make time to do the things my heart yearns to do. Like write – not just in my journal or rambling long Facebook posts but really write. Like a book. Or something more lofty and worthwhile. I could read ALL OF THE BOOKS. Each night I have to force myself to close my book because I cannot bear the thought of what not getting at least 8 or 9 hours of sleep at night will mean for the day ahead. Without it, I am quite literally useless.

Just think of how many more books I could read, how many awesome shows I could watch, how many literary works of genius I could produce, how clean I would be, how my house would be spotless and organized, my cats claws all neatly trimmed, litter boxes cleaned, days full of healthy meals with ample digestion time and watered flowers I would have with just 8 more hours in a day! Think of the friends I could see and the life I could live if i didn’t have to sleep so much of it away!

But wait. I’m gonna go out on a limb here and say that most of you reading this probably feel you could use more time in the day, too. Moms and dads, young professionals, single people, artists, craftspeople, exercisers, social butterflies and work-a-holics, the peri-menopausal among us – you probably all want those extra 8 hours too. It’s kind of basic, really.

It’s not just me. It’s not just because I have a stupid disease. It’s just life. That’s the way life is. Maybe we all feel that way as we inch closer to middle age and a time in life when time itself finally stops feeling infinite.

Or maybe I’m just telling myself that so I can stop being afraid that I’m sleeping my life away. It’s really hard to tell.

The party was awesome (the party was horrible)

That’s me with my favorite clients and my boss.

This is me too. Well not really. But you understand.
All of the work to get to the big day was worth it.

Our new office Open House was a great success. All of that pre-party angst was over and things fell into place nicely. The last minute construction issues that had been keeping me up at night, actually got completed. Almost every single thing was done.  The office looked fantastic.

People came. Lots of people came! And it looked like they were having fun.

We had many guests in from the home office for the event since we were also having an agency-wide Town Hall meeting live from our new offices earlier in the day. I was the keynote speaker. I worked on my deck for days. I had such a great story to tell! It was a great celebration of everything we’ve done in our little office over the last almost 14 years and I was awash in the glow of finally, finally having the chance to talk about how we did it.

And it was possibly the worst presentation I’ve ever given in my life.

We had technical difficulties. The slides weren’t showing me my notes at all. I kept losing my train of thought. Then more technical difficulties made me lose it again. Even that was ok! People were super nice about it. It sucks to present to people via video conference in the first place let alone when your feed keeps going in and out and you’re not seeing your damn notes. I let myself off the hook (sort of). But I wasn’t happy. I moved on.

At the end of the Town Hall meeting, my boss made an announcement about my recent promotion while a slide on the screen showed a picture of Gal Gidot in Wonder Woman. I was beyond embarrassed. A little touched. And awash in irony.

Wonder Woman, indeed. I could barely stay on my feet. After the presentation debacle, I still had one more goal: Survive the party.

Surviving the party meant the following to me: Stay on my feet. Look like I was having fun. Walk and talk to folks around the office who were in visiting. Sneak out when it was technically over at 7PM without making a scene. Go home. Crash.

But when I woke up Thursday morning, I knew it was going to be one of those days (again). I was struggling. Pain. Unsteady legs. Lots of things going on probably brought on by stress, a long, long day ahead of me and a few too many long days behind me in the last week. There were a few other factors I cannot get into in a public forum but suffice to say I made things extra hard on myself. By accident. But still. I was a mess.

I had a plan. I was wearing something easy and comfortable (black of course) with flat shoes. I showered the day before so I didn’t have to exhaust myself getting clean right before the long day began. I had stacked the invitation list with people I’ve been dying to see but hadn’t seen in a long while because I’ve just not been up to socializing much.

This was one party I wouldn’t be able to cancel out of! I kind of had to be there.

My friends and co-workers took their turns holding me up, walking me to the bathroom, propping me up in handy corners and on available chairs. I didn’t eat much because I was so unsteady I couldn’t eat, socialize and stay vertical all at the same time. I had to pick two, like on the value menu at Panera.

When I have to be somewhere, doing something that looks totally normal to regular people for a perfectly normal amount of time, it’s not normal to me. My body goes into some kind of weird shut down mode. It starts to feel like that second picture above. My legs get super stiff and heavy. My knees ache and my back throbs. The pain tingling throughout my body is almost like a buzzing, like a constant backing track. My eyes go glassy and I start using the wrong words for the wrong thing in casual conversation.

My body doesn’t always feel like this, I promise you. Sometimes it’s merely a mild annoyance. Sometimes I just blow it off and take that day as a work from home day and move on. Sometimes they happen when you have life to live. Like last night. And you can’t avoid trying to play the game.

When this happens, you feel like a failure. You feel pathetic and sad. I mean, what it must have looked like! Me, being dragged around by my elbow, from spot to spot, looking like death warmed over and about to fall over.

People kept telling me how great I looked. I know I don’t look great. I look like a swollen, bloated Ursula the Sea Witch who’s been on steroids for a while and can’t stop eating and bloating like a giant water balloon that it takes parade handlers to keep on the ground. I know I do. I can see the pictures. I have actual mirrors in my home, people. I know what I see.

But someone not very close to me, said something very wise and surprising to me last night. She said…Only to you, Beth. You look sad, pathetic and busted up but ONLY TO YOU. Nobody else looks at you that way. It’s in your head. To the outside world, you’re killing this. Just accept that.

That made me think of cognitive restructuring and my last meeting with my precious therapist, Cheryl.

I was telling her how lately I can barely leave the house. I feel fat. Old. Ugly. I feel like a house frau who only wears yoga pants and baggy tank tops (because most of the time I am a house frau who only wears yoga pants and baggy tank tops). I looked in the mirror last week and thought to myself, “Well, my face being all distorted and puffy actually isn’t so bad because my wrinkles are barely visible! Winning!”

I was telling Cheryl that our decade long attempt to get me to deal with this failing in my sanity, was also failing miserably. My inner voices were louder than ever and even more hatefully aggressive. I had a new therapeutic request! A challenge if she chose to accept it, you might say.

I wanted to walk away from it. I don’t want to rationalize, know why or what for…I want it to be OVER. I don’t have time for it. It’s dumb. It’s wasteful and ungrateful and immature. It’s actually more than a little bit pathetic. How many REAL problems do I need to have, I asked Cheryl, before I can walk away from the imaginary ones? Who the hell cares what I LOOK LIKE? WHY DO I EVEN CARE???

Here’s the reality, folks.

My list of things that mattered in a day was quite long before this whole MS thing started. I had an official Persona. A thing to protect. I had to dress the part, act the part, and expertly play the part. My daily list of things to think about before getting out of bed and unleashing myself upon the world used to include things like:

  • what kind of mood am I in?
  • dress or jeans or something fun?
  • what kind of jewelry?
  • what shoes? high, higher or really high?
  • should I do elaborate make-up or keep it simple?
  • Who am I going to see today?
  • Am I going out after work?
  • how hot is it going to be today?

About 18 months ago, my list of things that matter in one day got strangely very short, very fast:

  • can I move?
  • am I in pain?
  • can I walk far enough to leave the house today?
  • can I get appropriate clothes on my body for going outside?
  • how hot is it outside?
  • (some things never change)

As Cheryl and I talked more about Public Beth, my well curated persona perfected over a course of 45 years or so, we started to realize something pretty obvious. I put the pressure on myself to create Public Beth. I thought she was what the world wanted. I thought being Public Beth was the path to happiness and eventual success. People seemed to love Public Beth and I fed off of that positive reinforcement like food from the gods. I really liked Public Beth. The mountains of selfies I used to post are all out there to prove it. I took serious pride in Public Beth.

I used to try really, really hard at all times. I was never not trying. Never. As I got older, I maybe pulled back on some things and simplified some routines, but I was a person who couldn’t not try. It is ingrained into who I am. I think I thought it was who I am, which in and of itself is a bit horrifying. But there you have it.

I felt like I had to adhere to these insane standards. I had to be the prettiest, the most stylish, the most successful and the most creative, the very most fun and delightful at all times. I had to be an “It” girl or I was nothing. Like I said, I did mellow out around 45 but I never really gave it up. I just changed the definition.

It’s too hard, now.

Now, I’m 50. I’m relatively newly diagnosed with a chronic degenerative disease. I often have little control over my limbs, so exercise is tough. I take drugs, many of them not just steroids, that make me bloat and gain weight. I am so tired all of the time that sometimes eating ice cream for dinner is less taxing than making a nice fresh kale salad.

Sometimes, at the end of the day I can’t lift my actual legs to take my pants off. It’s like they’re dead. When I get tired, it feels like lights in the rooms in the house of my body are shutting down one by one, room by room, until the house is totally dark and not a flicker of light can be seen. Maybe a tiny one in the attic. The one for my brain that can never turn completely off.

I know I don’t really  look like Ursula the Sea Witch (much), but after years of telling myself horrible things every time I get a glimpse of myself in a plate glass window or god-forbid a photograph, it’s what I see. Sitting in the chair at the hair salon before the cape is on is my very own personal hell.

So after the 5000th discussion about this issue, Cheryl taught me techniques for literally re-wiring my brain. She told me all about cognitive restructuring. I’ve been using my techniques so diligently! I believe they will work. I want to put Public Beth away. Just be regular old me. And worry about important things. Like my health and being happy more of the time and stop being so hateful to my broken, imperfect, not very reliable body.

It made me think of the party again and how having a public persona is what most people do. It’s how you play the game of life. Small talk is bearable for public personas. You laugh and say witty things and your eyes dart around the room looking for the person you’re supposed to be talking to next before you actually walk away from the person you’re currently talking to. I saw so many people’s eyes doing this last evening it almost made me kind of sad. Even when not constantly looking at our phones, human beings still have such a hard time focusing on what they’re actually doing at any given time.

Public Beth isn’t compatible with the real me. I might try to look like her on rare occasions (not all that easy with this moon face but hell, I like a challenge). I still try to use her to protect me even now. But she fails because she quite literally doesn’t matter anymore. She has ceased to exist. I miss her. I can’t lie. But it was probably time for her to move on.

I have more important things to care about. The public clash of Public Beth and Real Beth made it feel like there were actually two of me at the office party. The one outside that was trying so very hard to hold it together, just until 7PM and the one inside, the real one, who needed two friends to walk her to her car, one at each elbow, because at the end of that night I was broken. Legs turned off. Done.

It was a really awesome party. I did enjoy it. But I also hated it. I think I have a bit more time to figure out what I really feel about things that are really important. I have my internal mantra for my program of cognitive restructuring  to kill that hateful inner voice I have, but I may need to move on to the physical snap of the rubber band on my wrist.

I wasn’t supposed to refer to myself as Ursula the Sea Witch ever again. I was doing so well! Cognitive restructuring ain’t easy.

 

Relapse: Part Deaux

If this keeps up, I’m gonna need a bigger nightstand.
He called me. He actually called me himself. He didn’t sic Evil Nurse Carol on me, The Great Scott all powerful and good called me back his very own self. 

I explained more about my situation. The intense pain. The inability to stand for very long (like less than ten minutes). The weird numbness in my hands. My fatigue hasn’t been bad at all and my walking wasn’t terrible (thanks Ampyra) but I was so weak I could hardly stand so that kind of prevented any distance walking right there. 

He listened intently. He explained his point of view, bestowed on me from on high, as he is wont to do. He believes I’m experiencing a relapse. He thinks the two month flush was the thing that allowed it to happen on top of the fact that we both thought Tysabri wasn’t really doing all that much for me over the course of 15 months I’d been taking it. Then he explained that the Ocrevus can’t be to blame, rather it was probably benefitting my fatigue levels a bit (he’s heard this anecdotally from the infusion nurses who report on patient response to the new goo). 

“Well, Maribeth,” TGS said to me in the dulcet tones of the expert, “I had hoped to avoid this but you keep giving me new challenges so I think we’re going to give you a little hit of steroids to help cut this relapse short. You’ve done well on them in the past. We need to get you feeling a bit better don’t we?”

I really give TGS a bad rap. He’s really quite wonderful when he’s not arguing with me and my well-researched points of view. 

I’m on low dose steroids (50 mg once a day for ten days). This means stomache drugs to ease the side effects of the Prednisone and a sleeping pill to make sure I’m not up 24 hours a day. My nightstand medical drawer runneth over but if this gets me through my eventful next week of work, it will be worth it. 

It will be worth the bloated face and swollen feet and hands. It will be worth torturing my liver for a little longer. After all, didn’t we just learn that I have a crazy healthy liver thanks to that awesome Hepatitus B scare? Why yes! Yes we did. My liver can take it. 

I’m praying this little boost juices me up enough to get through two big days next week. Client dinner on Wednesday night with visiting dignitaries. All day office festivities on Thursday culminating in the official Grand Opening open house at the new and improved Moxie Pittsburgh offices. I’m not even being remotely sarcastic when I tell you I’m really looking forward to both! I honestly wasn’t sure how I was going to pull it off with the shape I’ve been in lately. I might have been able to fake one day, but both was an exercise in magical thinking even for me, the High Preistus of Magical Thinking. 

I’m hoping Vitamin P doesn’t let me down. I know so many people who hate being out on the steroids. I personally wish I could take them all the time. I’d get used to having a giant fat face and swollen body parts, I really would. Just to not be in pain for a little while and to be able to function almost like I used to is reason enough to put up with a little bloaty mcbloat face. I’m losing my death grip on vanity, it would seem. 

And who am I kidding? I can’t come close to anything near what I used to do. That ship has sailed, thanks to my busted central nervous system. But I can come close to being enough. Enough to feel happy and confident that I did a good job. I guess I never realized before how important that is to me. I guess I just took it for granted. 

So, if I do anything terribly inappropriate at the big office party I can always blame it on roid rage. If Vitamin P isn’t enough to hold me up and I take a fantastic tumble or have to sit all night, I can blame that on my stupid disease but I’m really hoping to feel well enough to actually have fun. 

Remember that? Having fun? I used to be pretty good at that. I hope I remember how. 

I think the thing about The Great Scott that I love the most is how he always manages to give me that other thing I seem to run out of a lot lately. 

That would be the most elusive drug of all. The one that doesn’t fit in my nightstand. Hope. He gives me hope. That’s what makes him truly great in my book. 

Drunk Texting, MS Edition

Names have been eliminated to protect the innocent. And the not-so-innocent.

Another shit body day. Pain everywhere. Legs whack.

Before I went to bed last night, I sent a lengthy email to The Great Scott (TGS) inquiring about this whole thing we call a “relapse” and telling him I think I’m actually having one. New symptoms that last longer than 24 hours? Check.

As soon as I hit send I got that same feeling I used to get after finally giving in and sending the text to the boy I shouldn’t be texting after a few too many glasses of wine. I’m referring to that nearly instant desire to somehow physically enter the internets or the airwaves and pull those words back. No sooner did I hit “send” on my email, I felt this horrible regret. Like I just admitted something embarrassing by admitting that my body isn’t working properly. Maybe he will wait a day or two to respond, just like the recipients of drunk texts of yore, just to leave me hanging in angst for a few more hours. I anticipate his answer being the usual “Well, Maribeth, that’s just your MS suck it up buttercup.”

Well. He wouldn’t say it quite like that but his dry tone and sardonic twinge will feel like he just said that. Truth is, I really like The Great Scott. I feel lucky to be in his care. He is the great and powerful, of course, and somehow the universe delivered me into his care. The universe knew I needed this neurologist, one who would be willing to listen to my endless arguments about science and his lifelong specialty and not just dismiss me. He argues with me.

Ask anyone who knows me. I need to look at every topic (good or bad) from every angle. Maybe it’s the writer in me, this obsession with motives and reasons but whatever the reason, there it is. TGS has lively discussion with me even when he vehemently disagrees with me.

I also worry, though, that he just wants me to shut up and accept things. I know evil nurse Carol certainly does. I know I’m projecting. I know they probably never think about me at all until my name appears in the list of unread messages and one or the other or both look at it and sigh and think to themselves, “Jesus. She’s still trying to understand the un-understandable” before typing a polite (TGS) or a terse (evil nurse Carol) reply. I know this is their job and I’m kind of like their client. I sometimes shudder when I get certain emails at work. I know how they feel.

I just don’t know if they can possibly understand what it feels like to go to bed so many nights in a row (at least a week) wishing and hoping and yearning to wake up and feel not quite as bad as the day before. I’m not even asking for feeling good like I felt before all of this shit hit the fan. I just want the regular bad. Like the pre-two-month-flush level of bad. I’d take that.

Now I lay me down to sleep, I pray the universe my pain to keep. If I should fall when I get up to pee, I pray the universe sends someone to help me (who doesn’t care about my mismatched pajamas).

That’s not how that prayer goes. But it’s what I got right now. I wish TGS and Evil Nurse Carol (suddenly she deserves capitalization to me for some reason) could know how much I want to help them understand what this is like each night. And how it feels to wake up another day with numb hands, weak legs and a back that feels like it’s on fire knowing that the universe has said “sorry sunshine, this is what you get” yet again.

It’s so much like the drunk texting the wrong boy feeling that it’s almost uncanny. That feeling of, oh shit! I shouldn’t have done that. Now he knows I care. Now he knows I’m not strong and mighty and over the whole thing, especially over HIM.

NOW HE KNOWS.

And I’ll be on those same pins and needles tomorrow checking my email with numb hands waiting for the boy’s response.

Or will it be from Her. That’s kind of like old times too.

Maybe I have unrealistic expectations

The stairs of death and the sorting chair.
It always comes down to this. The most basic things are my undoing. But when I thought about it more, I am starting to realize something that is probably painfully obvious to everyone but me.

And that is the simple fact that this might be as good as it gets. I keep hoping to somehow feel better. But maybe this is feeling better! Maybe this is it.

I remember when I first went on Tysabri and The Great Scott explained to me that it might help me to feel a little better but it could take up to 6 months before I noticed anything. He told me that disease modifying drugs (DMTs for those in the know) are primarily intended to keep your disease from progressing, not to undo existing symptoms.

Even knowing that fact full well, with every passing month after that 6th infusion I got more frustrated. It wasn’t helping me. Other people in the infusion room got 20-22 “good” days a month. I got no good days a month. It was frustrating but I hung in there. I knew I only had a year of safely taking Tysabri because of my JC positive status. I was on month 15 when Ocrevus was beginning to get a lot of buzz.

TGS told me he thought I’d be a good candidate for the new goo, as he called it. He said it might help me feel a bit better but more importantly it might help stop the progression of my symptoms that seem to have just kept getting worse and worse as time went by. I know I have relapsing/remitting MS on paper but I’m telling you here and now, if I’ve ever had a remittance, I sure as hell didn’t notice it. Each passing week there were new and ever more frustrating symptoms. My walking got worse and worse. I finally started the walking drug – and that helps, but it only helps. It doesn’t fix me. It merely makes me able to walk very short distances. I was all about jumping on the new goo bandwagon.  Hope is another drug I can’t resist.

That’s the thing about us early diagnosis people…you can’t quite give in to thinking that this is what it’s going to be like now. You can’t quite stop waiting for the miracle that’s going to mean this whole hideous experience was just a bad and very long dream. You grasp at straws.

So I went off Tysabri for the famous, more like infamous, two month flush. I felt horrible. I barely left my house for two months. I could barely muster the energy to get through 3 or 4 hours a day completely conscious. I managed to work. I managed to get into the office every now and then  but it was ugly. I felt horrible.

The thought starting sneaking into my broken brain…maybe it had been working all along. If this is what I feel like without it, it had to be helping more than I believed. I just didn’t know how bad things could get. I wouldn’t allow myself to go there. I had to believe it wasn’t working and my struggle was all Tysabri’s fault and not the fault of my broken central nervous system. I had to believe that because the alternative wasn’t palatable to me.

I pinned my hopes on the new goo. When I got approved for Ocrevus I did a little happy dance. So it made me more likely to get cancer. So what? I would be less likely to get PML and that’s nearly always deadly so…winning! I can look for cancer. I can prevent it or treat it. That was much more appealing to me than a deadly brain virus. Sign me up.

I had a few really great days after my first infusion where I got the first half dose. I did then and I do now chalk this up to the hit of Solumedrol they give you with the Ocrevus. It wore off and I kind of went back to before (I couldn’t let myself call it normal…I can’t accept this as normal yet). This time, though, I had some lingering post-two-month-flush things going on, things like terrible back pain, weakness in my thighs and really bad headaches the kind I’ve never had before in my life. I might have felt a little less fatigued but not much. I focused my hopes on the second 1/2 dose. I mean, how much could a 1/2 dose really do?

I made myself feel better. I allowed myself to believe there was hope to get back to “normal” by focusing on the magic that would happen after my second half dose. I had a crazy busy work week and I made it through somehow so that’s a good sign, right?

Well, you probably know already what I’m going to tell you. I had my second dose on May 23. It’s almost a week later and I’m here to tell you that it’s been a tough week. I’m struggling. I remembered I took the week after Memorial Day off from work on Tuesday morning after Memorial Day and I was beyond relieved. I didn’t feel strong enough to shower AND go into work. I knew it was going to be a day of “or’s.”

My legs are still weak as hell. I’m actually having pretty severe balance issues, which is new for me. The headaches continue. I’m not feeling great. I keep trying to pretend I do then I do something that should be easy, like taking a shower or changing the sheets on my bed, and I have to hold on to the bed or the walls of the shower because I’m trying not to give in and simply go down because the pain in my lower back is so sharp I feel like I’m being cut in half.

There are a few things I need to do this weekend before I go back to work on Monday.  Changing the sheets was one and that almost did me in. I did what I’ve been doing during the two month flush – I laid on the bed for half an hour after I finished and waited for the pain to go away. The kitties have come to really love this tradition. They walk all over me purring and head butting and being generally lovable but that really only helps a little. I feel pathetic. I had the thought I have so frequently lately, “This has to get better at some point. It HAS to get better.”

The other tasks on my list are just as boring. Laundry, because when I’ve run out of pajama bottoms that I haven’t accidentally peed through at some point or other during the last several weeks, it’s time to do laundry. First I had to sort. My back was throbbing so I realized quickly that I had to sit. Hence the chair you see above. I sat in front of my giant laundry tub and I sorted. It reminded me of how I put my clean pillow cases on – while seated on the bed. It’s what I have to do. For now, is what goes through my head as soon as I type those words, but is it really only for now? Or am I being delusional?

I know there will likely be four trips up and down the stairs while I switch loads, carrying laundry up and back down, you know the laundry drill. You probably do it without even thinking. You are probably annoyed by it but it’s nothing more than that, an annoyance. I feel like I’m doing a triathlon. FOR NOW, I think again.

But is it?

Maybe the new goo is only capable of doing so much. Maybe this is it and I should stop thinking about for now and start figuring out how to accept this reality. I need a chair to sort laundry. I need to sit while putting pillows in pillow cases. My pain is almost constant and also makes me feel very tired. This is just what it’s like now. Things like this will happen to all of us as we get older, it’s inevitable. We will all slow down. Age isn’t really avoidable. I’m just getting it all at once. It isn’t like losing a limb. It just makes little things big things and fast things impossible. It is what it is!

The other things on my list for today – grocery shopping, pet store and a shower – those will wait until tomorrow. They will have to. I’m tired of thinking of a time when “this” isn’t going to be like this. It’s probably not going to change and I need to accept it. It could be so much worse! I have happiness in my life, in spite of it. It probably looks nothing like your vision of happiness or even my own vision of happiness from two years or so ago, before my diagnosis. But I’m not unhappy. I’m just annoyed.

So I think my new quest, since I always seem to need to have a quest, is to figure out how to stop waiting and hoping to feel better. My new quest is to adjust my thinking (again).

I need to stop being disappointed when the pain comes, or when I have to sit down, or when I can’t do things I wanted to do. It is what is is. We all have our things to deal with in life. This is mine. This is my latest, I should say. There will likely be others to come cause hey, I have a chronic disease! That’s chronic degenerative disease life, man, it only gets worse.

The real truth is that I won’t be able to stop hoping. I know myself too well. But I am hoping that I do better at not beating myself up for my failings. I need to stop feeling like I’m failing because I’m not getting better. Maybe I will get better! Maybe that day WILL come. But until it does, I have to just live and stop waiting to live.

I have joined a few Ocrevus support groups today on Facebook that have already been helpful. It helps to hear about others and their experiences with this brand new drug because so little is known about how or when or if it works. Just knowing that I’m not the only one who is on the new goo who isn’t feeling all better yet makes me feel better. Just knowing that there are others who are waiting, waiting, waiting to feel better and getting frustrated that it hasn’t magically kicked in just yet. Reading one woman’s comment about waiting it out, not expecting miracles after one dose made me feel better. It might mean nothing, but it made me feel better.

I’m going to cultivate patience and peace. If it doesn’t get better, I will learn how to be this new me and not be miserable. I know I will. Because I have to. This new life is different, so different than what I expected to be living right now, but it isn’t terrible.

Gotta go now and switch loads. It’s almost bedtime and I need clean jammies. Clean jammies and clean sheets. See? Life isn’t bad. Life is just different.