MS Life is Chock Full ‘o Irony

You probably already knew that. MS is a mean, relentless, ironic disease. It’s actually one of my most obvious observations since this whole wacky ride began almost two years ago this month. Well, two years ago in December anyway but close enough.

The things I’ve hated on about myself or thought were critical to my state of mind are the things aggravated most by my multiple sclerosis. So in essence, MS is working to make my worst fears actual realities. Here is but one of many examples…

My looks have always been way too important to me. I took vanity to some dizzying heights in my twenties and thirties. Hell, even into my forties, who am I kidding? It was the thing I always clung to as necessary for my happiness and sense of well being.  As a result, the second I’d been wronged or jilted in some way or when things happened to me in life that presented unpleasant challenges, I would immediately focus all of my energy on hating the way I looked. It’s my standard stress reaction, according to my Precious, Cheryl my therapist. Cheryl is rarely wrong. Because this reaction of mine is pretty much guaranteed. Something stresses me out? Something hurts me? Obviously, it’s because of all of my flaws.

There’s quite a few of those pesky perceived flaws. I’m not pretty enough, I’m not thin enough, I’m not stylish or cool enough, I’m not the kind of girl guys like, I have major hideous physical flaws. I catch glimpses of myself in any reflective surface and see what I believe is a real-life monster. I believe this to be actual truth (though Cheryl often reminds me that I have “broken eyes” that see things that aren’t really there when I’m stressed out…whatever, that’s just crazy).

In circumstances like this when I’m in that reliable downward spiral, when I become the monster-girl, there is one perceived hideous monstrous flaw that bothers me a LOT. It is the area of my upper back that I affectionately refer to as my hump.  It’s part of an entire upper-body focused twisted obsession wherein I’ve convinced myself that my neck is too thick, my posture is terrible and as such I’ve developed a roundness in my upper back akin to good old Quasimodo.

I refer to my hump often. My hump really ruins any dream I’ve ever had of being perceived as graceful. It’s round bumpy humpy-ness utterly ruins my profile. I loathe my hump. It haunts me.

Lately, since my relapse from hell I’ve developed some odd symptoms. I’ve been having a severe, burning pain in my hump which has never been attractive but had yet to have actual feeling associated with it. Now it burns like hellfire that requires me to ice it for any kind of relief. Pain relievers have zero effect on my burning hump.

The next weird thing I’ve been experiencing is an overwhelming thirst. Like, ten days in a desert without water thirst. I’m woken up in the middle of the night nearly every night with a mouth and throat so dry I can barely swallow. I’ve been drinking a lot more than a gallon of water a day. I’ve had to increase my 5 gallon bottled water delivery from 4 per month, to 5 per month and most recently I’m up to six 5 gallon bottles in a MONTH. That’s just insane. I live alone!

And finally, I have noticed a very strange, uh, re-organization of where I carry weight. I’ve never bothered much about my belly because comparatively speaking, it wasn’t anything to really worry about. Now I have a gut. I have a round ass face and a thick neck. My skin is weirdly dry. Try not to be jealous. I know it’s hard.

I was worried I might have developed some kind of serious condition like diabetes or thyroid disease (or worse). Isn’t one disease at a time enough?

My primary care doctor, Dr. Mackey, ordered a bunch of blood work for me so we could figure out what was going on before I saw her today for my annual visit. We talked about my hump pain, my amazing thirst, my roundness in unwanted places…and then we discovered something even more mysterious. My blood results were amazing. No blood sugar issues, lowest A1C in my life, thyroid levels normal. Normal. Normal. Normal.

And yet…searing pain in my hump, debilitating thirst, dry skin and all the rest. Even Dr. Mackey (kind woman that she is) said, “You do seem to have developed a roundness at your upper back that concerns me.”  A roundness?!?! She was medically acknowledging my biggest fear.

MY HUMP IS REAL! It’s not imaginary and it has been getting worse and guess why? Come on, I’m sure you’ve guessed by now…It’s likely to be due to something called Cushing’s Syndrome that is sometimes caused by long term use of high-dose steroids. You know long-term like over the last six months of my life. I’ve been on steroids 5, maybe 6 times? That includes my IV Solumedrol in the hospital that time. I get a small hit of Solumedrol with each of my Ocrevus infusions.

“Will it go away?” I asked her, feeling utterly desperate. “How do we get it to go away? Or make it stop growing?!?!?” I think Dr. Mackey could hear the desperation in my voice. I mean, I’m less than subtle as a general rule.

And then she said, “Well. You can avoid being on high dose steroids as often as you have this year but that’s kind of impossible seeing as your MS has been so incredibly active in the past 6-8 months.”

Um. Ok. That little piece of information is a giant chunk of suck. I can’t avoid steroids! Unless I somehow miraculously stop relapsing every few months, I have a future chock full o’ steroids. Unless the new goo suddenly kicks in and I suddenly start feeling like a real girl again (as if that’s likely to happen).

F.M.L.

MS, it turns out, is trying to ruing everything about me. My physicality, my appearance, my general ability to do basic tasks – and now, NOW, it’s going to mean I’ll likely be in constant adrenal suppression that will make my hump even humpier than it already is. Just when I was trying a new era, one where I try harder to  love-my-broken-body! Goddamit. I want to be nicer to my body, I want to stop resenting it so actively but damn if it isn’t really hard to love your damn hump. Humps are inherently unlovable. Trust me on this.

I’ve read that Cushing’s Syndrome is reversible. According to the Cushing’s Support and Research Foundation, “This process of weaning and wakening of the adrenal axis may take up to a year, and should be monitored by an endocrinologist or physician who has ample clinical experience with the process.”

Another specialist? Another “process.” When I see that word anymore I shudder. I’m not asking for a whole lot of instant gratification, people! Just a teeny, tiny twinge. Why isn’t there some speedy method of hump reduction? Is there ANY JUSTICE IN THE WORLD AT ALL?!?!?

So me and my burning hump will be trying to figure out how to wake up our adrenal axis (whatever the hell that is). Until such time that “process” is completed, prepare to listen to me complain about my damn firey upper back “roundness.”

Dr. Mackey is such an amazingly nice woman, but I cannot deny that I wanted to punch her in the throat when she used that word.

Maybe MS is trying to cure me, finally, of fatal vanity. Maybe MS is trying to help me re-focus on more lofty things like trying to feel good instead of trying to look good. Maybe it’s trying to force me to accept that it’s always been what’s inside that counts (even though I thought that was actually a thing people would say to unattractive girls when they felt sorry for them).

I’ve made a vow, a solemn vow, to try and love my hump (and all of the other objectionable things about this body these days). I don’t know if I’m up to this challenge.

But it’s either that or waking up my adrenal axis and that sounds kind of intimidating. I’m sure it involves a lot of kale.

Post Script:

Here are some good things that happened today to me and my hump…

– I went to the doctor AND to my office today, meaning I walked more steps today than I’ve been able to walk in a while and also remain upright. (1,701 to be exact…I’ve made it clear before that my expectations are really not that high.)

– I ate a giant healthy salad for lunch AND butternut squash soup. I’m so healthy! I also walked to get said salad and soup all by myself. Not very far, but still. It counts. I didn’t need a walking companion.

– I made some serious progress on experiencing life on the outside today, more than I’ve been able to accomplish in a good while. I guess that’s progress.

 

 

The blog post that almost wasn’t

Not my real desk. Not my real writing. I actually journal with an app these days. I’m so tech savvy.

By now, if you’ve read anything of this blog you know that I am a daily writer. I’ve written in a journal for over 20 years. I have stacks and stacks of paper books full of my scribbles. These days I use an actual app and I journal on anything – my phone, my computer and my iPad. Along with my Precious (aka my therapist Cheryl), I don’t have much hope of remaining quasi-sane without daily journaling.

Writing is cathartic for me. It’s something I do because I need to do it – not because I want to. I can’t not do it. So imagine how happy it makes me when you guys tell me you like reading something I’ve written. It’s beyond anything I could have ever wished for.

I started putting my personal writings on this blog because I needed a community. I needed to find people like you all that I could learn from. Real people with real MS who were bound to be so much better at managing this disease than I am at present. I have great doctors, I really do, but it shocks me to this day how The Great Scott, while clearly one of the very best among MS specialists out there, still doesn’t quite get it. I know this every time he asks me, “When did you last walk a mile, Maribeth.” I resist throttling him mostly because I like him and I need his big brain.

Unless you have MS, you can’t possibly understand what it feels like to have it. You can empathize and listen and love and help. I’m grateful for all of those around me who do these things consistently every single day. But you also need a community. So I found one. Props to http://www.trippingonair.com/ for being my original inspiration to take my writing public. You should check her out. She wins awards and stuff and is one of my personal favorite MS bloggers out there.

All of that said, I still write in my journal things that I need to deal with in writing first and foremost for myself. Things that are private (believe it or not, I do keep some things private. Not much! But a small few topics). After infusion #2 of the new goo (Ocrevus for the newbies) I found myself struggling to write Musions on My Newest Infusion #2, which would have been the next logical blog post. I went to bed, tired to the bone from the juice, but not able to sleep. So I did what I usually do when that happens. I wrote in my journal.

This morning, when I’d read over what I wrote to myself last night it made me realize that I needed to share it here with you all, as well. It was the best description I could give about how I felt about this infusion #2. So I’m repeating it here (verbatim, no editing so there’s probably a million writer mistakes included).  I should first apologize for this marathon long blog post. Folks that get through the whole thing might just be super human! People generally like short pithy posts, or tips or hacks or whatever. That’s not me. Oh well. Gotta be me.

So here it is:

It was infusion day today. Big number 2.

I haven’t blogged about it yet but wanted to talk about it here, with myself, because I’m already in bed too late for getting maximum rest before attempting to both shower AND get to the office tomorrow but my brain is in overdrive. (Probably that tiny pinch of steroids injected into my bloodstream today is making sleep elusive.)

It would be notable if I accomplished those amazing feats I mention above but I’d been hoping to get the same little boost I got from Ocrevus the last time (really the first time) and when I’m feeling unrealistically optimistic, I do stupid things. Things like emailing my entire staff and telling them I’m going to be focusing on getting into the office more after infusion day number 2 is in the bag. I may or may not have committed to being in the office tomorrow. The very first day after my big nearly 8 hour day at Allegheny General’s infusion center.

Not all that smart, am I? No you aren’t that smart, Beth.

I feel like I need to kick myself in the ass. Hit restart. I gave myself until this day, big infusion day number two, to stop believing this body simply can’t operate in the outside world as a regular, if slightly ability challenged, human. Today will be over in a few hours and I feel like I have to try harder to make it happen, to stop my brain from undermining every single little thing in my life.

The trick is, figuring out how to do that without trying so hard that I kick myself back into relapse again. Or fall (again). Or end up in the hospital (again). It’s really difficult to determine where that line is. My nose is still a bit purple! It’s literally as plain as the nose on my face, one might say, that pushing too far without realizing it can have dire consequences.

How far is too far? I honestly don’t know and that scares me. But there’s a feeling that comes over me. The feeling of a good day. I haven’t had one in quite a while but it hasn’t been so long that I’ve forgotten what it feels like.

It’s not specific to any symptom. It’s not just how I feel when my feet hit the floor in the morning and I walk a little easier. It’s not a sudden burst of energy. It’s not a lightening bolt when you look back on the day and realize you weren’t popping Advil like Skittles. It’s more like a slow realization that the pain suddenly is not quite as painful. It’s a feeling of lightness. A feeling of safety. A feeling of peace. It never lasts very long, at least not lately. But it’s the good place.

Those are the days when my MS is quiet.

The thing I always fail to realize on a good day is that the constant noise in my head is somehow not there. It usually runs on a loop in my brain daily. “I can’t I can’t I can’t I can’t I can’t…what if? what if? what if? what if? always always always always always… it hurts it hurts it hurts it hurts it hurts I won’t I won’t I won’t I won’t I won’t…” Repeat. That voice allows MS to put a veil over life that makes everything slightly less vivid. Slightly less clear. Slightly less appealing. Slightly less possible.

I don’t know how to stop that voice. I’m probably stupid to give myself some kind of clear line in my own personal sand to test myself. To force myself into action. To present myself with an actual date.

Take a shower. Leave the house. ON THE SAME DAY. Believe it works and it will work. Allow yourself not to be scared.

It all sounds so inspirational and like so much bullshit. It could actually BE too hard. I might get out of the shower tomorrow and feel like my limbs are suddenly made of over cooked pasta. I might fall down when my feet hit the floor when I get out of bed. The world around me could suddenly be spinning like a crazed whirly bird. I might throw up again. I might have something entirely brand fucking new like not being able to see right or one or the other side of my entire body suddenly going completely numb.

Any of that could happen. That’s what this crazy ass messed up disease actually does to our bodies. And it’s entirely unique and different for each of us. We can relate to each other (us who are in this strange club called multiple sclerosis most of whom are my digital friends, but not all). It helps to know that someone else had a similar thing happen to them that one time…but that only goes so far. Your MS is your MS and until you look it in the face and make some kind of friends with it, every day will be a complete and utter surprise. I literally have no idea from minute to minute, second to second, moment to moment what my central nervous system has cooked up for me with her girl Friday (my immune system). I have to just accept it. I am almost two years into this mess and I’m shocked that I still haven’t accepted it.

Listen. Here’s the bottom line. Every day is a complete and utter surprise even for people that don’t have MS. My unpredictability is almost better than theirs, all of those normals I mean, because mine has a name.

Theirs is just called “life” and holy shit that’s the scariest disease of all because it also changes moment by moment. I used to be one of them (a normal) and i know how I felt. I thought I knew how my life would change for a million different reasons…I had a plan. I was reasonably smart and I worked so very hard and made such important plans. I would tell myself that by being a good, kind, loving human being I would have my happy little place in the world. Things would go my way. They had, for the most part, so it was an easy myth to believe…But I didn’t know. None of us has the first fucking clue what’s going to happen on any day of the week. We just think we do. I know!

Maybe when I look my named disease in the face and accept all of that chaos I will begin to accept that disease isn’t always ugly. It has facets and eccentricities just like we all do. I think I know what it’s going to do. It’s going to destroy me. It simply has to. That’s why it exists! But maybe there’s more to it than that. Maybe disease can be a teacher. Maybe I can learn how to stop thinking the teacher is a mindless dolt, and start listening to her.

Or maybe I can’t. I honestly don’t know at this point in my own personal evolution. I have no idea what’s going to happen next. And neither does anyone else. This might sound crazy but that’s the part that makes me feel better. That I know that fact to be gospel-according-to-beth-truth. We never know. We never have known. It’s always been a complete crap shoot. And it still is.

Will I shower and go to work in the office tomorrow to triumph over the gauntlet I threw down for myself?

The truth is, I don’t know. I know I will try that’s all I know for certain.

Post Script:

My original plan was overly ambitious, after all. My day started today with phone calls at 7:30AM and then call after call after call until it was 3PM and I still hadn’t showered or brushed my teeth. I did make some important things happen with all of those calls so it didn’t feel like a failure to me. I just had to suck it up an accept that I was being overly ambitious.

It’s a good thing too. Because I did finally shower around 3:30 PM and that shower kicked my MS-having ass. I never would have been able to get done what I got done today had I attempted to go into the office after an early shower, as I so foolishly planned for the day after a rough infusion experience.

I know it will take some time before the new goo makes it’s magic. I’m there in my head now. But now that I’m finally physically clean? I’m going to the office tomorrow. Baby steps are still steps in the right direction. I’m giving myself a much needed pass on not holding to my commitment to be there today. In the end, I’m trying. I’m trying so very hard! That has to be enough.

A visit with the wizard

I was nervous looking at my calendar and realizing I had an appointment with The Great Scott yesterday.

I always have this irrational fear that I'm not doing my MS quite right. I used to walk out of that office feeling like a failure when TGS would ask me, "When was the last time you walked a mile, Maribeth?" It took everything I had in me not to burst out laughing, not in a good way, and then lunge across his desk and go for his throat. I'd leave feeling like a failure. I should be doing this whole MS thing better. Getting myself checked into the hospital as an in-patient while TGS was off on vacation felt like the ultimate failure.

The thing is, though, without me noticing,  The Great Scott and I have started a more productive phase of our relationship somehow. He has finally gotten to the point where he knows I'm no push over and he also knows that nobody wants me to be better at having MS more than ME.

I think he's pegged me for the chronic over-achiever I am. He seems to finally understand how much I hate this entire thing. I hate it from beginning to end. Being in the same place has allowed us to move on to  a new phase of our relationship. The one where he stops trying to bullshit me about walking a mile and starts talking to me straight about more realistic things.

I got taken into the inner sanctum early by a nurse, and I had left my bag and my phone out in the lobby with my nephew who served as my ride and support for the day since I am not driving-ready just yet. I still get too dizzy when I'm moving around to trust myself behind the wheel of my car. So I just had to sit there, in the sterile room, quietly with my thoughts while I awaited the appearance of TGS.

I steeled myself for the lecture. I wondered how he would react when I freaked the hell out when he asked me when the last time I walked a mile was. That quiet time had me all balled up and anxious. That was probably the longest I've ever been separated from my phone in…years.

A soft tap on the door preceded his grand entrance and the first thing I noticed was that TGS was tan. He was looking all browned up and healthy and I suddenly got a mental image of him wearing madras shorts on some fancy Caribbean beach somewhere sipping a mai tai and I almost giggled.

"Well, there she is," he said while ushering in two other doctors. "I'm running a little behind, Maribeth, so Dr. A and Dr. B here are going to talk through the progression of events that brought you to the hospital and then I'll come back and we can talk next steps."

Dr.'s A and B were very kindly young men. I had to go through the whole progression of events from my first Ocrevus infusion in May…then on to my landslide in June resulting in my short stint on high-dose oral steroids, and my subsequent slide into feeling slightly off balance and thinking maybe I needed a cane and/or physical therapy, to the fateful day when I woke up all wonky and sick that landed me in that hell hole they call a Level One Trauma Center for four very long and miserable days.

Then I had to explain how I was discharged without so much as a strip of paper or any directions on what to do next. I also explained how the three different neurologists that I saw in the clink had three different theories on what landed me there.

Dr. A explained, "The doctors in the hospital checked you for stroke, which this clearly was not. They diagnosed you with vestibular neuronitus not a relapse of your MS. I'm not sure what I think about that, but we will see what Dr. Scott has to say." And as if on cue, after a soft tap-tap on the door, in walked in Malibu TGS looking relaxed and friendly.

They all conferred, all of my many doctors, and The Great Tan Scott looked at me and said quite matter-of-factly, "So the doctors in the hospital who saw you said you have vestibular neuronitus. I disagree one hundred percent. Those doctors were wrong."

I said, "Well, respectfully, my first reaction to hearing that news today was…how dumb. When you hear hoof beats, think horses not zebras. It made zero sense to me."

I actually made TGS laugh!

"I was about to use a similar analogy but yours works just fine. This is obviously an ongoing relapse, Maribeth. You've had a rough time. But I still think the new goo is going to help you," he said.

"I feel like this whole thing is one big blur of really bad timing," I said to him. And he agreed with me again! I am now officially in crazy town. Vacation must agree with The Great Scott.

"I think once you get beyond this vertigo, you'll start getting back to a better place but this is a rough patch. Nearly 40% of my MS patients experience this kind of thing. A lesion the size of a pin prick could be present in your brain stem in the region of the vestibular nerve (since you already have so many lesions in the brain and C-spine, this is the obvious conclusion). The lesion could be the size of a pin prick, not visible on your MRI, but that doesn't mean it's not there. Or as you put it, horses for sure and definitely not zebras," said TGS.

Other little gems he dropped on me during our brief visit (in his words):

To me…"Vertigo can be stubborn. It can last weeks, or months and even years. You can't do anything about it but wait it out. If you're not feeling better in  few weeks we may consider an outpatient stint at the Vestibular Rehabilitation Unit at Allegheny General. But that shouldn't be necessary." (Good christ on a cracker…a few more weeks of this?!?! I am in danger of losing my mind if I cannot get back to my life sooner than that. I think the look on my face conveys this reaction completely, therefore I do not verbalize it.)

To the other doctors… "Maribeth here has progressed a bit more rapidly than is usual for a newly diagnosed MS patient. She's still in the thick of it and is struggling with a higher than normal disability level than is usual for a newly diagnosed patient. Hence our aggressive approach to her therapy." (Yikes. He never said that out loud to me before, but knowing he thinks the same things I've been thinking somehow made me feel validated.)

To me again…"You've had a rough time. I am confident the new goo is going to be great for you. I remain fully optimistic that we did the right thing. Your disease is just a bit more active than usual so it's going to take you a little longer. Usually new patients level off within five years or so. So it's coming for you, the feeling better part, it's just that you have no choice but to wait it out." (FIVE YEARS NOW?!? Jesus. I'm going to feel better when I'm 55 years old?!?? Good lord.)

To the other doctors again… "What is the mechanism that makes Ampyra work Dr.A?" And Dr. A clearly had no idea because he was literally stuttering, so I piped up, "It's a potassium channel blocker. It smooths out the electrical signals between my brain and my legs. It only works for 30% of patients who try it but it clearly works for me since when I don't take it, I cannot walk." The Great Scott looks at me sort of surprised, like, and says, "Well, you're exactly right. Are you looking for a job now, Maribeth?" (He made a joke! A funny! Malibu Scott is a lot more mellow than pasty not-tan Great Scott. Also I think Dr. B may be mute because I've not heard him speak this entire time.)

Back to me again… "There is no reason for us not to continue to be optimistic, here, Maribeth. I know this has been discouraging. Hospital visits are not fun. But if we're patient, I think the new goo is going to get you to a new normal that you can manage. Listen, today, fewer than  10% of newly diagnosed MS patients end up in a wheelchair. The therapies are so much better now than what we had to work with in the past. A wheel chair used to be a forgone conclusion but it's now very unlikely. I know you are discouraged. But I remain optimistic on your behalf." (Well, at least one of us is. I guess I'll take it.)

On the topic of PT…"Let's give you time to heal and get back to your office first. You need to take this slow. Do not prolong the situation by pushing yourself too hard. Rest and time are the only things that are going to help this situation. I suggest you try and give yourself plenty of both." (Wait, WHAT?!? This, from when-did-you-last-walk-a-mile-guy? I am so surprised I am rendered speechless. A rarity for me. TGS seems shocked by this as well.)

And SCENE.

My nephew and I went and had lunch after my appointment. Being a passenger in a car was not great for me. I was super woozy. All of that walking around in the outside world, where I've been absent lately, turned out to be a bit much for me. I realized I had a raging head ache. And I was feeling even more nauseous than usual. After my nephew helped me with a few small chores and many laughs (that kid…he cracks me up), I planted myself in my living room chair – the one that I feel might swallow me whole one day since I've been spending so very much time sitting in it. My chair and me are becoming one. I try to look at my computer to answer a few work email, and I realize it's no good. I am going to be sick.

I drag myself through my kitty chores, get upstairs and put on my jammies and prepare to lay flat on my back until the sick feeling goes away when another more powerful wave of nausea hits me. I dig in my bedside table for the handy puke bags I stole from the hospital, and you know what happened next.

I felt immediately better. I lay down. I read a short three chapters of my next book…and I go to sleep. It was just starting to get dark when I put my book down. I didn't care.

I'm following doctor's orders. When The Great Scott tells you to rest and take it easy, you rest and take it easy. I am going to try and cultivate his infectious optimism and hope that I am back in outside-world-form within a few weeks. I know it seems like a really long time. Because it is a really long time. What MS has taught me this week is that I really have no true notion of what a long time really is. A few weeks that feel like a lifetime? It could be worse. It could always be a whole lot worse.

One more tiny piece of news.

When we got back to my house after our post-doctor appointment lunch, I had a few packages on my front porch. One of them was marked with the words "fashionablecanes.com." My nephew grabbed it up and was like, "Yo, let's see if this cane is really fashionable enough for you, AB." And we laughed. We opened the box and we met my first cane.

I'm calling him Stan. He is rather basic, but reliable. He isn't flashy but he will help me when I'm no longer unable to drive, but I might still need some support to keep from holding on to walls, buildings and random strangers whilst walking around downtown Pittsburgh.

I still need to get the hang of walking with Stan. Somehow, I feel less awkward drunk walking around town grabbing on to random stuff than I do when trying to walk with Stan around my living room. I'm sure I will get used to him.

I'm a loner, we know this, but sometimes you need a little help from a friend named Stan. And Malibu Great Scott. I'm going to miss his tan when I see him again in November.

The tortoise and the hare (guess which one I am)…

I'm working on adjusting my expectations but I have to be honest, it's harder than I want it to be. Listen. I've never been the hare. Even at my best, I've never been what you would call naturally speedy or lithe. I've always been rather clumsy which in turn meant that I did things slower than the average bird. I also might have been described, by people who know me well, as a person who is either all on or all off. I am either 100% dedicated to my task or I want nothing to do with it at all – there was very little middle ground in my life. I believed in black and white. Gray was a shade in which I didn't do so well.

Fast forward to the last 18 months after my diagnosis of multiple sclerosis. I was teaching myself to do life a little differently. I had to learn that my brain might want to do all of the things – but my body probably had other ideas. There was a lot of pain and a lot of feeling like I was running on empty. I was learning – I didn't like it. But I was learning. I was learning that my life would be lived, from now on, in small chunks. In shades of gray.

I used to get frustrated by only being able to do two or three things in a row before I'd crap out. Those typical things might include…going to work, coming home to kitty chores and maybe some writing at night. Or on a weekend they might include going to run errands (one store only), getting a pedi and changing the sheets OR doing laundry (never both). I was learning.

In the weeks since my hospitalization, I've had to start thinking about a whole new level of slow. I'm down to one thing a day. ONE THING.

Yesterday, I took a shower. That depleted me to the level that I could  barely sit up straight while my dear friend trimmed up my hair and waxed my eyebrows in my kitchen last night. The day before that, my one thing was trying to drive to the grocery store to pick up groceries. It was super hot. I got super dizzy. That one thing was almost one thing too many. Lesson learned.

Today's one thing was running the vacuum. My cleaning lady had to call off this week so it will be two weeks until she cleans again. The cat hair situation was becoming a bit much. Every day I come down from my bedroom to plop in my chair to try and amuse myself for a few hours before I fall into bed again to sleep more, I am distracted by the tumbleweeds. Tumbleweeds of cat hair, blowing through my home, now that the windows are gloriously open and the breezes are flowing into my home. I had to do something about the tumbleweeds.

I did it. I vacuumed. I felt better. And I felt worse. This would be my one thing for today.

Today was a glorious day! The dew point is low and the temps are more fall-like than late summer. After my hair cut last night I was so tired, I forgot to eat. I was hungry this morning and even though staying in bed was tempting, I had to eat something. I thought for a hot minute that maybe I'd attempt to go out again today. Maybe I'd walk to the end of the block – see how I did. Maybe I would run to Target to get a non-slip shower mat (my stupid stick-on shower treads were an epic fail…they didn't last through even one shower).

But once I sat in the kitchen with the breeze flowing through the open windows eating a yummy blueberry muffin, I knew what I really wanted to do was to go back to bed. I needed more sleep. The sheers blowing in the wind in my bedroom relax me. The twinkling of the chimes that hang on the porch of my house and my neighbor's porch calm me. When the air is on, and the 17 fans I have running in my bedroom are running and the windows are closed up tight to keep the dreaded heat and humidity outside – I can't hear the chimes. I can't hear much of anything. It's like nothing outside of my room (or my house) even exists.

But today! Today was the kind of weather I live for. And while most people in the world would be outside doing outside things and having fun and traipsing around the city doing perfect weather things, like brunching and window shopping and maybe hitting up a farmer's market or a second hand store…I listened to my body and went back to bed.

I would like to tell you that I didn't feel badly about doing what my body told me I needed to do. I did have the passing feeling of regret that I'd waste this perfect day. I didn't waste it though. I had a lovely sleep. I had lunch with my mom (late lunch of course) on my porch. After lunch, I came inside. I ate a fresh peach and some cherries – my latest obsession since remembering that I love cherries and they were on sale on Thursday when I got my groceries. Of course I didn't know that, but my mom did. She's like a professional bargain shopper. I had forgotten how much I love cherries.

And then I attacked the cat hair tumbleweeds. Only on the first floor, mind you, I'm not a triathlete of home chores or anything. By the time I sat down to wind up the cord, one important chore completed, I realized how doing that one thing felt like working out.

I have to figure out how to do more than one thing soon. I mean, I can't stay home forever. I have to move around in the world. I have to try.

I can accept that I'm the tortoise. I always preferred the tortoise to the hare. The hare was a bit full of himself for my taste and it is the actual moral of the story by Mr. Aesop, isn't it? Slow and steady win the race. I guess I never realized how slow slow could go.

I'm going to try a few more things next week. I'm going to try to get myself to the office. My cat lady helper is only signed on through Monday. After that, I will have to handle the steps at least twice a day to handle the litter boxes. I am already training myself to accept that this might be the extent of what I can accomplish in a single day. If I shower, one or the other of those things will have to give since I'm down to one-a-day status. I can't help but wonder how long this snail's pace can keep up?

I see The Great Scott on Wednesday. I'm actually a little nervous about it. I am wondering what he's going to have to say about my whole stint in the joint and the decrepit condition of my body since then. It's been almost two whole weeks since I got out. I'm not dizzy 100% of the time anymore but I'm nowhere near pre-hospital levels – which in and of themselves were not really that impressive at all, if we're being totally honest.

I'm going to get a name for my PT so I can make an appointment with someone who knows MS and get that started, too. I wonder how I will have energy to do the things I need to do to make myself stronger when I'm in this one-thing-a-day phase. Where does going to physical therapy fit in? What will have to give (besides everything)?

Slow and steady win the race, said Mr. Aesop. I wonder if the tortoise had a chronic autoimmune disorder? I wonder if he resented his inching along the race track, noting every pebble, every twig, every leaf on every bush planted low to the ground while he kept his little tortoise eyes focused right in front of him so as not to get too overwhelmed by the task at hand. I wonder if he knew he would win the race in the end..Or if maybe he learned that the race isn't really meant to be won. It's meant to be experienced and maybe even learned from.

I wonder if he was ever afraid that he was going so slow, he was barely moving at all?

But how about this weather, folks! It's glorious. It's what my mom used to call perfect sleeping weather. I guess it's a good thing then, that I am going to be doing a lot of just that. Very soon. Again. I will lay in bed and read my scary book and remind myself that the tortoise actually wins the race in the story. He just does him (he always looks happy in the illustrations). The other forest animals cheered him on the entire way. He gets there, when he gets there.

I guess I will too.

Don’t call it a comeback

I got cocky again.

I know. Shocker but hear me out. I had a decent day yesterday. I got through the whole 8 or so hours of my work day without taking antivert. I participated in a day long training session that I actually enjoyed and felt included in even though I was on the telephone and all of my colleagues were together in a room. I thought it would suck and it didn't. I had a good day.

I went to bed super early after reading a few more chapters of my super scary book (another distraction technique). I had cranked the thermostat down to my usual nighttime temperature of 60 degrees and I slept like a damn baby.

But I'd gone to bed after putting the chain on the door – which was dumb because I should have remembered that Kathy would be coming in the morning around 5am and she'd not be able to get in the house. Sure enough my phone ringing at 5am alerted me to the problem. I stumbled down the steps to unlock the door and then stumbled right back upstairs to go back to precious sleep. I knew I was going to try day two without antivert and I needed the rest.

But when my feet hit the floor once my eyes opened for the second time today, I knew I wasn't all together steady. I still decided not to take the antivert. I needed to try. I had plans later that afternoon to go pick up some groceries I had ordered online. My mom insisted on coming with me – just to be sure I was ok. All I had to do was drive a few blocks to the grocery store, call the number and wait for the guy to come out and put the groceries in my trunk. Easy peasy!

As soon as I stepped outside I knew it probably wasn't such a good idea. It was muggy and humid today. The air felt thick. As soon as it hit my skin I shifted into super slow mo. I opened my car door, the car that hasn't been driven in over two weeks, and went to sit down when the wave of dizziness came over me.

"Do you want me to drive?" Asked my mom.
"No, I want to see if I can. It's literally like two blocks and we'll be going slow," I said.

She didn't love the idea but we were already in the car so off we went. It took longer than usual for the air to cool off the car that had been sitting in my driveway in the heat for two weeks. I felt like I was suffocating. But we drove super slow. Every time I turned my head to look at traffic or see if I could turn my stomach did a little flip. We got to the grocery store without incident. I drove through McDonalds so my mom could get her favorite treat of late (iced coffee sugar free vanilla) and I got a vanilla ice cream cone. Then we drove trough the ATM so I'd be sure to have some cash if I was gonna be home and taking deliveries and paying off helpers and such.

By the time we got home, I declared myself a failure. The dizzies were back. I felt like I could lie on the floor and sleep for a year. I had another meeting to get through today and a tentative plan to go in the office tomorrow for a quick company meeting I'd planned earlier in the week when I was feeling optimistic. But after my short foray into the outside world, I quickly realized that driving more than a couple of blocks would be idiotic. I'd be doing that meeting by phone. Goddammit.

I've read all the articles and blogs and talked to all the smart friends and experienced MS'ers about how hard it is to come back from any setback when you have this disease.

I knew, intellectually speaking, that this would be the case after my short hospitalization. But in the back of my broken brain, I always seem to think I'm going to be special. It might be hard for other people, I'd think, but not me. I'm pretty stubborn. I can do things. Lots of things. MS is different for everyone! I could be an exception. I assumed I would be an exception.

I'm an idiot. As it turns out, the only thing about me that is exceptional as it relates to my multiple sclerosis is my incredible ability to deny what's happening right in front of my own two eyes. I didn't really believe I'd be going to the hospital in an ambulance (an ambulance for chrissakes!) until we were pulling into the ER ambulance bay and even then I was still in denial. Every night that I was in the hospital, I'd convince myself that tomorrow I HAD to be going home.

The depths of my denial are really difficult to grasp. I can be laying here in bed at 8:30pm, feeling my limbs give out and my back begin to ache and my head slightly spinning and still wonder if maybe I could be a-ok tomorrow and make it into the office for my little meeting anyway…

…yeh. Not gonna happen. I'm not outside-world-compatible just yet. I'm hoping that after (another) weekend of extreme resting and generally doing a whole lotta nothing, maybe I'll be feeling outside world ready by next week? Maybe?

I guess it's firmly in the wait and see camp right now.

Something knocks you down, in this case quite literally, then the ripples emanate outward into your life like rings in a placid lake hit by raindrops. They get bigger and bigger until they finally disappear and the lake is still, like a mirror, reflecting your own image back at you. The question is, what image is it that you finally see once the ripples stop?

Well. That, too, involves a whole lot of wait and see.

I've mentioned to a few people I've been in telephone meetings with this week how much I suck at patience. I'm not so good at the waiting and seeing game. I'm more the make it happen and change it if you don't like it kinda girl. Maybe that's why I'm good at my job? But this is one very clear example of a situation where taking too much action can put you right back where you started…and we've already established how I will not under any circumstances be going back to the hospital any time soon if I can help it.

Even if it kills me, I need to find my inner zen and wait this shit out. Then I need to take baby steps, literally, before I can really walk. Then I will start PT and little by little I will get stronger – but it will be little by little. That's just how this stuff works.

Sometimes I think this is happening to me because the universe is trying to teach me an important lesson. Slow down. Stop trying so goddamn hard. Just be. Just breathe. I wonder how dense I must be for the universe to think she needs to give me a freaking chronic illness with which to teach me these important lessons. Couldn't the universe have just made me like yoga?

Nah. I'm a "learn the hard way" kind of girl. I will be dealing with these particular ripples for as long as they feel like sticking around and I will just have to accept that.

On the upside…I can read a bit easier and also watch television. I bought some new sticky tread things for my death trap of a shower hopefully making getting clean not so much of a feat. I also have mini-hair and eyebrow day in my kitchen tomorrow evening because my beloved friend and hair wizard knows me well enough to know I need to be cleaned up a bit in order to feel closer to normal and going to the salon right now is also pretty low on the list of things I should be doing right now.

It will all work itself out. I will be ok. I just don't know when. And that just has to be ok.

Tales from the puffy village

That's it up there. The puffy village. The place I love most in the world, where I come for comfort, where I lay my head when the world out there becomes too much. An old boyfriend dubbed my overly comfortable bed the puffy village a long time ago because he said it was so insanely comfortable you could live there happily for all time. The boyfriend is long gone. The puffy remains.

I take a lot of care making her as comfy as possible. I choose my sheets and bedding with obsessive care the way I used to select designer shoes. Currently, I'm in a mixed print phase.
Just looking at this picture makes me happy.

Mostly.

See, I've spent a whole lot of time in the puffy since being sprung from the hospital on Monday evening. I mean, I'm glad I got out. I couldn't stand the idea of that hideous torture chamber they call Allegheny General Hospital for even one more second. I guess I thought it would be better at home. I'd feel better. The ruse I performed for the overly attentive PT team would turn out to be real and I'd go back to being able to stand up, walk around, bend over touch my toes and do a little jig. But as I'm sure you've figured out by now, things actually haven't gotten much better at all.

I'm so dizzy it's ridiculous. I can barely remain on my feet. I hold on to anything and everything in order to do basic things like walk to the bathroom or down the steps to the kitchen. My legs are weak on top of the dizziness I feel in my brain. I feel like my house has been transformed into a fancy house boat that happens to always traverse super rough waters.

The antivert I'm taking for the dizziness makes me tired and doesn't seem to help the vertigo much at all. I haven't left the house since getting home Monday night. I've been asleep approximately 85% of the time since. I'm still in pajamas all day and I've yet to risk the shower. I'm deathly afraid of falling and ending up in the hospital again – and lord knows, that's just not gonna be something I allow to happen.

Family and friends are at my beck and call to handle chores, to feed me, to make deliveries and make me laugh. Mostly they're there to help me up and down the steps and take care of my very spoiled menagerie of felines. Damn, I have a lot of cats.

I can't read because my right eye is wonky. I can type if I keep one eye closed. Television is hard, again, because of the wonky eye. My list of things I can do consecutively has grown shorter. I'm down to one thing at a time before I need to rest. I used to have at least two things in me, sometimes even three.

It's hitting me hard because I'm finally realizing that this just is what it is! The part I thought was the worst, where I was waiting for the magical drug to kick in and make me more human, that was the good part! I thought it was the bad part. I thought I could only get better.

Turns out, it's super easy to get so much worse. I wonder how long it's going to take me to bounce back from this episode? What will my new normal be? Will I ever get back to my doing three small things in a row self? How long will I be the queen of the puffy village?

At what point do I simply cease to exist?

I know. I'm super dramatic. Spending so much time alone in deep thought whilst listening to one's body fail all around her will do that to a girl. And that pisses me off even more!

I'm the queen of the loners! Ask anyone who knows me and they will tell you how much I enjoy my own company. It's probably a giant character flaw but it's true. These last few days I feel like I'm in the twilight zone where I'm walking from familiar room to familiar room, holding on to walls and chairs, looking for the person I used to be and not finding her. There's someone else here now. She can barely stand up and her hair is atrocious. Don't even look at her eyebrows! The horrors.

I keep telling myself this too shall pass. That's what everyone, literally everyone I know both in real life and in MS life, has told me and I believe those people. They're so much better at this MS thing than I am. They've gone to the darkest places and clawed their way back. I keep thinking I've accepted this thing in my life then something happens that turns my life ass over teacups and I'm back at the beginning looking around thinking, "what the hell just happened?"

I just want to not be dizzy so badly! I want to will it so with my broken brain. I want to sleep the sick away and wake up magically feeling a little worse for wear but generally just a little gimpy and slow. I thought that was the bad part! I thought things could only get better. As if I didn't know the truth.

The truth is that was probably as good as it gets. That whole time before this hospital incident when I felt like I'd hit rock bottom wasn't even close to the bottom! I'm looking at getting my first assistive walking device (form tbd hopefully with the help of some outpatient PT once I feel a bit more able). Once I get a cane, I'll probably need a walker soon after that. The wheel chair can't be too far behind right? At least a scooter…

I know how lucky I am to have the luxury of sleep in the world's most comfortable bed. After being deprived of sleep for so long, being in the puffy feels almost like heaven. And yet the whole thing changes a little tiny bit when you realize you're not in the bed by choice. You're in the bed because your body flat gave up on you. No combination of high thread count mixed print sheets can help you in that situation. You just have to suck it up. Try to be grateful and go back to sleep.

Every time I close my eyes these last few days I have this intense hope in my heart that when my eyes open again I'll be off this houseboat version of my life and back to my happy place where a shower isn't life threatening and awesome sheets are enough to make me feel happy.

Until then, here I lay. Flat on my back. Cultivating happy hopeful thoughts and functioning as a speed bump for my very many cats. It could be worse. It could be much worse.

Remember the hospital? Exactly. Shivers.

And then you rest 


I had a crazy busy week. Long hours. More running around than I’ve been used to. So much going on at work that my head was spinning by the time I got home each night so tired that I’d crawl right into bed to prepare for doing it again the next day. 

So today? I’m off today. One of the amazing things about my employer is the number of paid holidays. We are closed the Friday before Memorial Day as well as Monday. I get one extra day without an alarm going off. Four whole days to get my head back on straight before it all starts again on Tuesday. 

Am I out running errands or exercising or socializing? No. No I am not. I’ve declared today an official day of rest and the universe rewarded me with a gray, chilly day with which to enjoy the crap out of, totally guilt free. I’d feel too guilty doing this on a sunny day. Me and my creatures are snuggled up with a good book. We may all just stay here until tomorrow morning!

I’m trying to get better at not beating myself up for not being super woman. I’ve said it before and I’ll say it again, my job takes a lot out of me. It exhausts my brain with the constant thinking, problem solving, management, maneuvering and strategizing. It now also tires me out physically from the increased amount of walking I’m doing in my new office space. I’ve also been trying really hard to get back to more of a regular routine. I can work from home and be quite effective. It just messes with my mind and lord knows I don’t need one more thing messing with my broken brain. When I’m there, I’m useful. And happy. 

But being there, in my office, has also allowed me to get back to loving my home. My personal sanctuary begins to feel like a prison when I’m cooped up in it by necessity, instead of choice. When it’s by choice, mostly, like today it feels good again. It reminds me that I’m happy here. That this is really one of my most favorite places to be. 

I’m beginning to see a light at the end of this long, dark tunnel that I’ve been in since diagnosis. I am beginning to see something that looks like a new normal. It’s not fully realized just yet. I still have to figure out basic things (like how to travel without wanting to die) but the things I love are starting to look like they used to again. 

I’m laying in bed, writing a blog post, snuggling with kitties and preparing to do a little reading. It’s exactly what I want to be doing. And it feels kind of great. 

The journey you travel after diagnosis is fraught with loss. Everything starts to feel like a loss after all the waiting and wishing to feel better. You start to wonder who’s life you’re actually living now. You start to wonder if you’ll ever just be happy again. 

I know better than to think I’m out of the woods. I know there will be days ahead when I feel bleak and hopeless, just as I have felt in the last two years. 

There is magic, though, when you start to let go. When you’re not beating yourself up so violently for doing what you need to do, what your body requires you to do. There is magic when you realize that your body isn’t a separate thing from you – it is you, it is your vessel and your home. If you take care of it more (and I’m not talking about eating right and exercising even though I know I probably should) instead of hating on it, it starts to stop hating you back. 

After my second infusion of Ocrevus this week, I jumped right back into my old routine. I felt slightly less fatigued. I kept up. I definitely slept a lot to fuel the pace, but I kept up. 

Me and my body deserve this day of peace. We’re gonna go now and focus on enjoying it.