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.

Twas the night before infusion #2

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

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

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

I think my hopes are irrationally high.

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

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

I want to shower more than once a week.

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

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

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

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

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

My expensive Internet slippers tried to kill me

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

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

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

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

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

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

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

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

I actually did this just a few short days ago.

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

The slippers of death.

But I digress. Back to the story at hand…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep Passing the Open Windows

Finally a real top down day.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Baby Steps

I’ve been wanting to have a minute to report in on my first infusion with the new goo, more formally known as recently FDA-approved multiple sclerosis DMT, Ocrevus. But I’ve struggled to find the time. Busy with work, busy with home, busy with…not feeling like utter shit.

I know. Crazy right?

I’m not going all ga-ga just yet. I know nothing can work this fast and the semi-human feeling I am experiencing these last couple of days could very well be the result of that teeny tiny dose of Solumedrol that they give you along with your first Ocrevus infusion.

The Great Scott, aka TGS my crazy brilliant neurologist, and I argue pretty regularly about my opinion of my body’s reaction to Solumedrol. He claims there is clinically no difference between the outcome/effects of IV steroids versus high-dose oral steroids. My personal experience contradicts this expert opinion (he really is an expert, that TGS, that is not at all sarcastic). But Solumedrol is like magic in my veins that makes me feel like a real human girl instantly – if only for a short time. Oral steroids make me feel like I’ve taken some bad speeders from a street dealer. So I’m not discounting the fact that the tiny dose of the magical IV steroid elixir I received on Monday might be contributing to this not-like-utter-shit feeling.

But it’s still a good sign.

It’s not like I’m not in pain today. I am. It’s not like I’m not tired today. I am quite tired. It’s not like my legs are walking machines looking for the nearest track so they can run a few miles or at least speed walk a few blocks. They are not.

But I did have two decent days in a row. Did I overdo it because it’s been so long that I’ve felt like anything but utter shit?

Well, yes. Yes I did. But it feels oddly good to be so exhausted. It’s the good kind of exhausted not the utterly defeated kind of exhausted. Yesterday, for example, I both changed the sheets on my bed (speaking of which, there is a really good reason why a girl who has three partially black cats probably should pass on pristine white bedding…ew) AND I took a shower to prepare for going into the office today for the first time in over a week.

It hurt. Don’t get me wrong. It hurt a lot. Halfway through the sheet changing my lower back was on fire and I had to sit a couple of times before it was done. But I did it.

I did an “and” and not an “or” and it did not kill me.

Today, I put on clothing and left my house for more than two hours! OK. By clothing, I mean the exact same outfit I wore to my client meeting on Friday afternoon, that consisted of black leggings, a black tunic and black tennis shoes but that still almost counts. And by leaving the house, I mean I went to work in my actual office location and not my living room.

But I was actively out in the world for more hours today than I have been in weeks.

I didn’t curse the sun. I left my house before 11AM. I wanted to hug every person in my office (I resisted because, well, HR frowns on that but I wanted to). I woke up with three new old lady zits on my face and I kind of just ignored them and remembered I have mad make-up skills and I covered those babies like a pro. I participated in several meetings and didn’t struggle to concentrate or stumble over my words (without Modafinil).I wore giant sunglasses. I sang in the car with the top down.

What? I told you they were enormous sunglasses!

When I came home, I didn’t crawl up the stairs after scooping litter on two levels of my house. I didn’t take the steps two at a time or anything and I went slow as hell, but I didn’t feel like the walking dead.

I will likely be in bed by 9PM tonight. It’s supposed to rain tomorrow. I love the rain. I hope it starts raining tonight so I can listen to it while I drift off to sleep.

Today didn’t suck. Thanks for that, today. I needed that.

Greetings from the Inside

The view from the inside on a prettier day.

Here’s some news.

On what is usually my favorite day ever, that would be hair day, I experienced the first bleach disaster I’ve ever had while in a professional’s chair. My hair was flying off of my head like feathers in the wind. I could see it coming off on the blue towel I was using after my hair was washed and rinsed. Not good. Not good at all. Even my hair stylist was almost speechless.

I reviewed every medication I’m taking (no connection). Did research on autoimmune disorders and hair issues (no connection). We did nothing different than we do at every other hair appointment for the last three years! It’s like a goddamn mystery.

I guess it’s a good thing I like my hair short? I guess it’s a really good thing I like my hair really short. I’m going to be really sad if this is the end of my platinum blonde phase. I know my magician of a hair girl will not let that happen. But that whole thing was traumatic for both of us. I hope we both can get over it.

I purchased an industrial sized bottle of Olaplex #2, the stronger kind that they use in the salon, and I’ve been dousing my head in it since this morning when I woke up and realized my hair was still falling out. I plan to reapply all night and tomorrow until I shower for pre-infusion preparation.

Infusion is Monday morning at 8am sharp.

I have to eat breakfast, pack a lunch, drink tons of water and maybe bring a blanket. I’ll be there most of the day. My friend Michele is driving me and picking me up because I’m getting Benadryl first to avoid any infusion reactions. Another friend from the infusion room had his first infusion last week and he said he felt like shit after and pretty much slept all day (probably from the Benadryl). I’m hoping to be back to closer to normal by Tuesday, but Wednesday is probably more likely.

I also found out that I need an MRI to establish a new baseline based on my JC virus status. I thought this new drug wasn’t a risk for PML but I guess they’re being better safe than sorry since it’s so new and they probably have no real data to say whether or not it’s actually safer for me or not.

I’ve been sleeping a lot this weekend. After a client meeting and a disastrous hair day yesterday I felt like the walking dead by the time I got home from the salon. I went straight to bed. I read some and surfed social media some. But I also slept a whole lot. It felt good. The weather has turned cooler again (like the universe knows I can’t bear the heat on top of everything else right now).

I feel like I’ve dropped out of life in the outside world for the last ten days or so. I guess that’s because I mostly have.

Maybe it takes dropping out of your life for a spell to actually make you want to live it again. There’s some logic to it. Dropping out of your life makes you miss things. Like people. And clothes and outside and driving with the top down. It makes you feel disconnected from the things that make you you so you find yourself wondering who you are now.

I’m starting to feel better about trying to drop back into my life outside once this treatment gets up and running. I’m so afraid of feeling worse. I might feel worse at the beginning, that’s just a fact. It might take a while. But it should ultimately make me feel a bit better.

Maybe once I’m feeling better I’ll be ready to drop back into my life again. Walk out the front door (even if I have to walk slowly or even give in and get a cane), but I could walk out the front door and see what’s what out there. Maybe plant some flowers. Or go out and have a drink with friends. Go back to the office and see actual people and do work in the actual world instead of doing work from my actual living room.

When I’m feeling better maybe I’ll reach that point other more “mature” MS’ers always tell me about, the point where this disease isn’t the first thing I think of when I open my eyes, the only thought behind every other thought that goes through my mind every minute of every day and the last thought I think whilst swallowing my handful of nightly meds before I go to sleep every single night.

The people who’ve had this disease for awhile tell me everything I’m going through right now is perfectly normal. They went through it, too. I appreciate them sharing that perspective with me more than anyone can really understand. The thought that this might always be the way I feel is not a pleasant one.

Maybe when I feel better I will remember how to enjoy things again, including myself. That’s what I’m really wishing for.

Less than two more days. Two more sleeps before the next seesaw of hope and fear starts up all over again. I hope this one is the one that takes. I’m really wishing that hope wins more often this time.

The Home Stretch is Rough

I’ve been holding it together. Mostly. The two month flush is for real, though, and I’m back to that place where I feel like my body is just out of fuel.

I’m off work today. I scheduled a bunch of random vacation days, now known as days that look like most other days but now with less guilt, so I planned to take it easy. I was going to allow myself a bed day. After the busy pace of the last week, I needed it. My mom, though, needed to get out of her house so I rallied to meet her for lunch. And by “rallied” I mean I got out of the bed, put on yoga pants and brushed my teeth. I didn’t even look in the mirror. My bedhead today is epic.

We had a lovely little lunch. Nothing too taxing. My mom saw me struggling to get across the parking lot to the restaurant and she said, “Shake it out. Get some movement in those bones. That’s what I keep telling your dad.”  I smiled at her. If only she knew! There was a time that shaking it out and getting moving really did help. That time seems to have passed. Now, literally nothing helps.

Late last week, my new primary care doctor was talking me through my medical history. What a walk down memory lane that was. I remember her saying to me, “So you don’t feel rested even after a good  8 or 9 hours of sleep?” I kind of laughed at that thought. “I never feel rested. I pretty much never feel rested at all. Nothing helps.”

Exercise might help, everyone says it does. How do you do that, though? When do you do that? I sincerely can’t figure out how that would work. I can barely drag myself up and down the steps to do the laundry. How funny…I’m out of yoga pants and pajamas so I am currently doing laundry. Very slowly. I make it down the steps long enough to sort, toss a load in and rest. I make it up the steps to rest long enough for that load to get clean before I have to climb down and back up again another time. Parsing out tiny pieces of the day between times when my body tells me it has to stop for awhile before parsing out the next tiny window of activity.

I tell myself to stop it. I have to get through this, this super shitty very long several weeks where my body has hit “E” and is literally trying to operate without fuel. It’s almost over. It’s only another week. A little over 7 days, actually, where I can give myself a pass and just try to keep up with what life I can until the day comes when I get juiced with something new. I have no idea what the new goo will do or how I will feel once it travels its way through my bloodstream, but I have to believe it will help me feel better than this. I’m kind of over this, to be really honest.

I was told to prepare for a long day at the infusion center on May 8. I have my ride lined up. I’m all ready in every way possible. Now I just have to look these next ten days or so in the face and keep moving from point A to point B even if I have to rest a really long time in between.

Get your bones moving, she said. Shake it off. Damn. I wish it was really that simple. Ten days seems like a lifetime right now. An unending span of tiny tasks and small sets of stairs that will feel like running marathons and climbing mountains to me. Ten more days of opening my eyes in the morning and immediately wishing I could close them again for at least another 8 hours (or maybe another day or maybe another week). Ten more days of stumbling around like a drunk woman who hasn’t had a drink in months.

But it’s just ten days.

 

 

It’s (not) infusion day

And I’m having my damn soufflé, anyway, so take that Great Scott. Take that. 

Instead of my infusion I got to sign the paperwork for the new goo. Three signatures. No giant black type telling me “THIS COULD KILL YOU” on any of the pages (good sign). New order for blood work since there’s a one in 200 chance I have hepatitis B and would therefore need to pay close attention to my liver functions (“we’ll get you approved either way…it just makes things complicated,” said TGS). I knew I wouldn’t avoid the needle completely today. I just knew it. 

This extraordinary exchange happened:

TGS: We’ll stay in touch over the next couple of months. We don’t want you to relapse. 

Me: Well. As we’ve discussed and agreed to before, I’ve never actually gotten to that whole remission thing yet so I’m really hoping it doesn’t get too much worse. I need to function. 

TGS: If that happens we may consider steroids. 

Me: I know you insist there is no difference but oral steroids don’t work so well for me. IV steroids are the only thing that has ever made me feel better. 

TGS: I’m sorry but you’re just wrong. The studies – there are many studies, prove that they are exactly the same. 

Me: Ok then, so my actual experience with both methods means nothing?

TGS: Listen, some patients think what they think. You think eating ice cream makes your pee orange so that has to be true. It’s just not. 

Me: Didnt you tell me last time I saw you that physical lesions on my MRI aren’t indicative of how my disease is progressing? Didn’t you tell me that the ‘way the patient experiences and reports their symptoms’ is the best tool you have for evaluating my disease progression?

TGS: Yes, yes I did tell you that. 

Me: But my actual experience with oral steroids versus IV steroids isn’t relevant? How is that different?

TGS: Well, in that case, you’re just wrong and I’m right. That’s all there is to it. (Laughs)

Oh. Well then. Consider the gauntlet thrown, Great Scott, challenge accepted. I will be googling studies to prove you wrong in every second of every day where I am not either sleeping or working because I really hate when someone tells me “you’re just wrong.” Even when that someone is The Great Scott. What I actually said to him after this last statement? 

“Well whatever. You could be wrong too.”

He laughed. Then he started quizzing his student, Aviva, random questions:

TGS: How do mononucleotide blah blah stuff I can’t say work?

Avila: Well I believe they blah blah blah things I don’t understand. 

TGS: Well no. That’s wrong. I guess you had a fifty fifty chance. Now check Miss Nigro’s visual fields please. 

Poor Aviva. She and me are on the same team. I smile at her. She says, “He’s funny that way.”

I say, ” Well that’s one way to put it.” She winks at me. The Great Scott laughs again. My visual fields seem just fine. 

I got to Quest to get my blood work in time to also get to Panera before 11am when they mysteriously take away the soufflés somewhere where you cannot buy them. I enjoyed the crap out of that soufflé. 

Oh. One more thing. “What can I do about this physical fatigue over the next several months while I’m waiting for the new goo?” I asked. 

“Lose weight. Exercise. That’s all you can do,” says TGS. 

I sigh. “Really? That’s what you have for me? Does it make sense to you that I am so fatigued that it wears me out walking from my parking garage to my office and you want me to exercise?”

“Well it’s your only option. It’s just the way it is,” he says to me. I see Aviva roll her eyes behind his back. 

“Well it’s stupid. I have to work. I have to maintain my home. I am single. I need my job. I can’t just ‘find time!’ Who do you think I am? Goddamn Montel Williams?! I actually have things I need to DO that suck up what little energy I do have. Things like showering. And laundry. Yeah. That’s just the way it is,” I say. 

“Ok then, it was great seeing you today Maribeth. See you again in August. Aviva, please bring my tools to exam room 14. Have a great day Maribeth. If you don’t hear from us to schedule you in the next three weeks, give us a call,” TGS says as he walks out the door. 

It’s gonna be a long few months. 

Musions on Infusion (possibly the last chapter for a while?)

I’m laying in bed knowing I should be asleep if I want tomorrow not to suck, but my broken brain won’t let me drift away into blissful nothingness. Not even after being shot up with magical golden (possibly poison) elixir today. Possibly for the last time – at least that’s what The Great Scott would like.

But today wasn’t as uplifting and positive as I was hoping it to be. There’s so much mess surrounding this disease. I imagine that is probably true of most chronic illness. The quagmire of hospitals, doctors, insurance companies, specialty pharmacies, drug manufacturers, nurses and billing department representatives feels like scaling a giant mountain (while having MS).

It has me a bit melancholy, to be perfectly honest. Sometimes it’s all just so…much.

The day started with me telling the story of my Ampyra debacle to the nurses and fellow patients in the infusion room. The story that ended up screwing me out of $500, thanks to Nurse Carol. It helps to know that I’m not the only one who has been touched by the genteel patient service of the illustrious Nurse Carol. We all have had our share of bad experiences.  You’d think that would make me feel better but it only made me feel worse. Even the infusion nurses know what a nightmare she is.

Then I found out that the bill I recently paid (for another $384) was a mistake that I shouldn’t have paid because they have yet to set me up for a new year of Biogen assistance. So what that means is it’s probably quite unlikely that I’ll get any of that money back (even though it was a mistake). But even if I do, the thought of the phone calls, the email, the back and forth of health system/insurance company hoo-ha will likely take weeks. Or even months.

I also found out that because of some screw up in coding, none of my insurance claims since last July have been paid. Nothing has been processed. I’m not sure what that means but I have a feeling it will end up not being good for me when they finally figure out their own goddamn system.

Oh. I finally got word today that my long-term Ampyra authorization is approved. Yay! But wait. I actually have to pay the $250 co-pay even though I know it should only be $40 because the paperwork has yet to be finalized between Nurse Carol, the people at Ampyra and the super effective and helpful people at CVS/Caremark. That will be another battle to try to get the money back that I’ve already paid.

Then the talk in the infusion room shifted to the new goo. It seems TGS is very bullish on the timing of the approval of Ocrevus. He has most of us stopping Tysabri after today. But the infusion nurses aren’t hopeful. You see, first they have to get trained and approved to be a designated “center” for the new treatment. Then they have to somehow get all of our insurance companies to approve paying for a brand new, super expensive therapy (which would have been much easier if I still had prescription drug coverage from Blue Cross Blue Shield and not those blistering idiots from CVS/Caremark). It really makes me sad because it’s another thing over which I have zero control.

The short story is it might be a while before any of us are on the new goo. And it’s very possible that my insurance may prevent me from even getting it at all.

I’m seeing TGS on April 5 to get an update and to check in on the plan. Maybe making this my last infusion isn’t the best idea. At the same time, I’ve always known that I only had about a year on Tysabri before the risk of PML becomes too high to balance out the benefit. I’d probably have to go off of it anyway. And then what? Because I’m JC positive, the options will not be great. I can’t even consider the idea that I might have to go old school and inject myself with interferon or some other injectable. I don’t know that the pill options are any safer than Tysabri as it relates to risk of PML. It’s all just so complicated.

I think all four of us in the infusion room left feeling somewhat muddled. Being the newbie, and mired in the muck that is the newly diagnosed experience, I might be a bit more down than the others but none of us seemed to feel too optimistic walking out of the infusion room today.

I told Cheryl yesterday how I feel like this disease has taken over my life. It pervades my every waking moment. Can I? Should I? How will I? What if I can’t? What if they won’t? How much will be left of me when all of this reaches some kind of new balance? What if it never does?

The energy it takes to play the part of Old Me while New Me is dealing with all of this madness is gargantuan. But not playing the part of Old Me isn’t even an option. I’m a single spoonie, after all. Someone has to pay all of the ridiculous drug and hospital bills. It feels a bit like a Catch 22.

Nurse A looked at me today and said, “I’m really proud of you for how you’re handling all of this. Most people just let it go. They don’t fight it. They don’t even know how.” I looked at her incredulously and said, “What choice do I have? Honestly. I cannot see any other way.”

And it’s true. I don’t feel amazing or strong or even skilled when it comes to this battle. I feel like I’m David fighting the behemoth that is Goliath (aka our fucked up health care system) with broken weapons, one arm tied behind my back and money bleeding from my veins all around me in giant puddles.

I’m only a little over a year into this and I just feel so tired of it. I’m tired of everything being a goddamn fight.

But guess what? It doesn’t matter that I’m tired of it. I don’t have a choice. It’s truly my only option. Plain and simple. So, I am telling myself to suck it up, buttercup. Have a little pity party for your fabulous, old, carefree life (it sure seems pretty carefree in hindsight! How funny is that?), then move along and figure this shit out.

Tomorrow is another day. Put on a happy face, swallow some super pricey drugs, and get on with it. In hindsight, I guess that’s what we’re all doing, really, chronic disease or not. At least I’m not alone.

One tiny bright side to (potentially final) Tysabri infusion day…I have in my grubby paws the phone number for good old Nurse Carol’s supervisor.

I better get to sleep now ’cause I want to be at my broken best for that particular phone call.

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Musions on Infusion, episode (I forget)

I had an off-schedule infusion today because it was also my day to visit with The Great Scott, in the flesh. You see TGS when he can see you, not when you damn well feel like it, so off-schedule infusion it was!

It’s funny. The infusion room is not a place I am ever very enthusiastic about entering but in some ways it’s also the place where I learn the most about my disease and get the most useful information.

Going on an off day is like going to a party with a bunch of people you don’t know but who have known each other forever. One of the women in the room today has been getting infusions for 14 years. That kind of blew my mind. I can’t even remember which one this is for me, but it might be 12? I can’t be certain.

Another woman wore an anti-Donald Trump t-shirt and kept spewing news and stories from the Internet openly in the room as she read them from her phone. Here’s the thing. I am of like mind, and as you may have noticed if you know me at all, rather passionate about my anti-That Man feelings. But in the infusion room you cannot escape. It was clear there were three of us on the same page and one of us decidedly not on that page. It was more than a little bit awkward.

I learned today from my all-lady infusion group that menopause and MS are not friends. I told them I insisted to my gynecologist to put me back on the pill because I wasn’t prepared to deal with all of that at the same time as all of this. The ladies unanimously agreed that I made the right decision. Most of them are neck deep in the menopause (as I like to call it) and all having exacerbated symptoms as a result. I am not anywhere near ready to deal with that and THIS at the same time. I know I said that already but I felt like it deserved mentioning twice.

My month has been marked by a persistent viral illness and some pretty off the charts stress levels (the stress is caused by life events over which I have zero control and which are frankly not mine to write about openly so I choose not to, but trust me when I say it’s…a lot).

Illness and stress at the same time mean my usual degree of feeling like crap is multiplied by a factor of about a million and basic life tasks become super challenging. I’m dirtier than usual (showering is just not possible when I feel like this) and more tired than usual (I’m not even sure how that is possible, but somehow it is). Life hasn’t been all sunshine and roses this month, thank you very much, and I’m not signing up for menopause on top of that. Period. At least not willingly.

Nurse A was on her own today and hustling her little butt off. I feel badly for her. She tries so hard to remain positive and upbeat but every now and then you get a glimpse of what her life is like working for the hospital and it’s not easy. Then she has to deal with us on top of that. It makes making ads for a living feel kind of like having a lemonade stand.

One of my fellow infusees today was a very challenged walker. She arrived late, like most of them did today complaining about how shitty people drive when it rains in Pittsburgh (which they do! Man it was a hot mess this morning). She inched her way across the room, pushing her rollator in front of her. She dragged one hot pink Nike clad foot across the linoleum, taking teeny tiny steps forward with her good foot. It felt like she was never going to make it across that room and I couldn’t help but wonder why she didn’t take a chair closer to the door. But as I looked down and found myself in the same chair I always sit in (fourth chair in from the door) I realized that habits are hard to break and comfort comes packaged in familiarity. She wanted to be in her chair. I get that.

I had to stop mid-infusion to go have my sitting with The Great Scott.

Like I said, TGS waits for no woman so I got my line capped and headed across the office to the other side where the geniuses live. TGS had two students with him today observing me so we went over my case in intense detail. I learned things I probably learned before but was too muddled to pay attention or know what they meant. We looked at pictures of my brain for a very long time, different slices from different angles, all lit up with bright white spots, my own personal festivus of lesions. I asked TGS how many lesions I have. I don’t know why I wanted to know but when you have a disease marked by ambiguity sometimes any concrete information is welcome even if it’s quite meaningless.

TGS: “There’s a few, (1-2-3-4), there are more here, (7-11-14), and here are more in this view, (17-19-25). I’m going to say you have anywhere from 30 to 45 lesions in your brain. A few more on your cervical spine. They are the likely culprits for your walking difficulties.”

Me: “That sounds like a whole lot.”

TGS: “Well, it’s not a lot and it’s not a little. It’s pretty much average. But these days physical lesions in the MRI are less indicative of how you experience your disease. Research has shown this over time. The better indicator is how you are doing over time.”

Neuro Students: Enthusiastic head nodding, concerned faces, some muttering. Me thinking: “MORE TIME, JESUS CHRIST HELP ME.” But smiling pleasantly at all of them like a daft lunatic.

TGS: “Student #1, why do we prescribe Oxybutynin – Maribeth, I’m putting you on Oxybutynin.

Student #1 with very kind eyes: “Uh, something about smooth muscle, controlling the uh, the bladder control, uh…”

Haughty Student #2: “It works on the striated muscle in the blah-di-blah-di-blah blah blah blah…” I’m sure this was the right answer because TGS clucked approval at him.

But I got the impression that Student #1, with the kind eyes, was his preferred student since he had him do my vision field tests and some basic neuro tomfoolery that happens at every appointment. Student #1 was a super small Asian boy, very thin, jet black hair that stood perfectly on end uniformly all around. His eyes were very dark, definitely black and sparkly. He shook my hand when he walked in the door, his hands were very thin and cold. The other one? He was a beefy white dude with dead looking pale blue eyes and liver-looking lips with a half untucked plaid shirt and he did not shake my hand. I did not like him at all. He was way too superior.

TGS spoke directly to me today instead of into his mini-dictaphone. It was a pleasant change of pace. Here is what we (generally) agreed upon:

  • I’ve not yet experienced a real remission but he thinks it’s going to happen (guess what? it takes time!);
  • He thinks this drug isn’t helping me as much as he’d hoped. He said “Tysabri is what I consider my  best drug but it’s not working out that way for you. I think we want to put you on the new goo.” He means ocrelizumab, the not-yet-FDA-approved drug that everyone is buzzing about in the MS circles (who knew there were MS circles? Well, there are.);
  • The new drug should be approved at the end of March, so my last Tysabri infusion will be in March. Then I need to be flushed for two to three months. That means no DMTs for me for 60-90 days. This scares me a lot. I’m kind of dreading April through June as a result. TGS said we might do some low-dose steroids during that time, depending on “how bad you tank.” He actually SAID that. Sigh;
  • My other new drug (the one TGS quizzed the student about) is to help “calm” my over-active bladder. Super fun. I hope it helps because when I’m not sleeping I’m peeing and it’s getting rather old.
  • The best thing he said during those intense 20 minutes was this, while looking at my brain on the screen in the room, “Most people start to have brain shrinkage when they hit a certain age and they have MS. If I didn’t know anything about you or this case, I’d look at this brain and see a brain of a young healthy person. This is a young looking brain.”

That might be the best compliment anyone has ever given me.

So I shuffled back to the infusion room to finish off my fill-up and share the TGS’s opinions with the ladies, and maybe gloat a little about my awesome young brain.

They unanimously explain to me that the early years (YEARS) are the worst. Each of them had a good three or four years of utter hell before things leveled off and they found some kind of normal. Then for some of them, menopause shoved them back into utter hell and the whole leveling off thing has to happen again.

This scares me a bit. It seems fairly likely that by the time I “level off,” assuming I do, it should be right about time for my hormones to go wackadoodle. I feel like my MS timing is all off. Young looking brain or not.

But TGS remains optimistic on my behalf. He said to me, today, “I believe that once we find the drug that works for you all of this can be reversed. Or at least most of it. I am optimistic.”

He actually made eye contact when he said that part. I felt a mild shiver run down my spotty spine.

I wish he could write me a script for optimism. My insurance would probably reject me for that drug, too.