This is a happy post about fear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Darkest Places (So Far)

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

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

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

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

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

And that is exactly what I did.

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

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

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

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

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

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

NOOOOOOoooooooooooooooOOOOOOOoooooooo!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Relapse: the Post Script

The thing is it doesn’t really matter how fed up I am. When you go through something like this last relapse, you tell yourself that it’s a minor set back. It’s just a hiccup. It can’t last forever! But then 6 weeks go by and you’re still feeling it and you start to think maybe it will indeed last forever.

There’s a lot of waiting involved when one has multiple sclerosis, particularly if one is young in their MS. Like me. I’m about 21 MS months old. I’m practically a MS baby but I’ve had my share of waiting in those 21 months.

First I waited to get approved for Tysabri. Then I got approved and I was waiting for the 6th or 7th infusion when I was told I’d feel better…and didn’t. Then I went through the 2-month flush before starting ocrevus, two months of feeling like such utter excrement, I could barely get myself out of bed. But once again, I got through it by telling myself that this amazing new drug would be the one that gets me back on the road to feeling more like myself again, but the thing is, it didn’t. I had about a month of feeling suddenly energetic and it felt awesome. Then, out of nowhere, I had a relapse two and a half months after my first Ocrevus infusion. I landed in the hospital for four days. Then I was waiting again, entirely focused on when I could get out and get back home so I could feel better. Then I got home, finally. But the feeling better part didn’t really happen.

I mean, it did. It did get better but when “better” just means occasionally throwing up as opposed to every time I ingested food and feeling like I’m drunk only 75% of the time versus 90% of the time but you could argue (and you would be correct) that I am better than I was. But better, better? Nah.

I’m back to waiting for the next great hope. That would be November. I find myself looking forward to November when I get my second full dose of Ocrevus hoping that maybe that will be the magical dose that helps me feel better once more…But the little voice in the back of my brain whispers, “Then again it might not…”

This disease requires a long game that I have never developed. To have this disease you have to be OK with your entire life being turned upside down over and over again, with more promises of “better” that come and go without the relief you were told would be coming.

So you focus on the next milepost. The next thing that might get your “overly active” disease under control for the first time since this whole crazy ride started so you can maybe not get back to “normal” (normal is probably never to be again) but maybe establish some new normal where this disease doesn’t affect every part of my every breath of my every second of every day. I have the experienced MS-er friends. They, who are much older in MS years than I, assure me that this is coming. I believe them! But sometimes it just makes me feel stupid for believing in fairy tales.

I did make it back to work last week. I made it to the office two days in a row. It felt awesome to finally leave my house but I’d be a liar if I didn’t admit that it was hard as hell. I practically had to force myself out the front door. I don’t look like myself. I forgot how to wear real clothes. Putting on makeup (which I usually enjoy) felt like putting on a disguise, someone impersonating the old me, not me at all.

I was so very happy to be out there, I really was, but I was also scared to death. What if I’d used all of my good hours in those days getting myself out of the house and into the office? What if I ran out of good hours before I’d make it home again? What if I had to use one of my handy portable puke bags but this time not in the privacy of my own home but in public among people who look to me for leadership? I’m supposed to be inspiring, the inspiring leader of the office! I was afraid for every minute of every hour I was outside of my home. Who have I become?

I’m back home now for a week of rest taking a long-ago scheduled week of vacation because I think I obviously need more rest. Ya know what gets tiring after a while? So…Much…Rest. Rest is wearing me out. Resting a faulty body that never feels rested no matter how many hours I’ve been able to stay unconscious, though I know it’s the best and only thing I can do, it feels anything but restful.

Nobody is pressuring me. Everyone, from my peers to my team to my colleagues and bosses is being as supporting as you would expect them to be in a situation like this. The one person who isn’t cooperating is probably me. I have higher expectations for myself. I’ve not allowed myself to believe that THIS life is my new life. This is just one of those waiting periods, another thing that I need to deal with, wait out or get beyond. I tell myself that I love my quieter, slower life but much like anything else I’ve had imposed on me, I might like it but I don’t really want it. I only like being quiet and slow when I’m doing it on my own terms. These are decidedly not my own terms. I’m not sure who’s terms I’m working with but MS and its terms are not acceptable to me.

I struggle with the whole phases of grief thing. I remember it well from when I went through this after my husband died almost 20 years ago. It used to frustrate the hell out of me to realize, as I was going through it, that those phases didn’t happen in a nice, planned, consecutive order. They happen all at once. All at the same time, sometimes completely out of order. When you think it’s over, those phases start happening again all willy nilly. Once you’ve experienced grief, you know that nothing about grief is at all tidy. You cannot control it. You just have to let it do its thing and wait.

People will tell you that you will be able to see the other side when you’re grieving but you really can’t. When it has moved on and you have a new life, it’s almost like a surprise. When did that happen? You really can’t put your finger on it. Once it happens, you wonder how you never noticed it as it took over. The feeling of seeing grief in your rear view mirror is more shocking than that. It’s like an old childhood friend who suddenly moves away. You’re sad because you’ve spent so much time together that it started to feel comfortable, but you guys were never really very good friends. You know you won’t miss your friend, grief, not as much as you thought you would, but then again, it will never really be gone. You will always feel it. Lingering on the edges of your life that is mostly happy it will be back there to remind you that it could all go away. Poof. Just like it did once before.

There is a silver lining to all of this. It’s a pretty obvious one, really. The silver lining is that I’ve done this before. I can do it again. I thought I’d never get any sort of normal life back after the one I had went POOF, but I did. I actually made a life that I really started to love. I just have to do it again!

We all have these transitions that we go through all through our lives where we are suddenly forced to acknowledge that having plans, being focused on anything but the moments, is really kind of a lie. “Nothing gold can stay.” Ponyboy Curtis taught me this when I was a pre-teen.* It might not be gold, anymore, but you learn to get great joy from silver and bronze. Sometimes you even get some platinum here and there. My slow, strange life might change or it might not. It might just one day feel like it should. Real. Until then, there’s always November.

Also, it’s not hot anymore. I can’t even believe I’m saying this but I almost turned my furnace on tonight! I thought better of it. But I almost did. It’s gorgeous sleeping weather. I better get to it.

 

  • “Nothing gold can stay” is an iconic line from one of my favorite childhood books, The Outsiders by S.E. Hinton who was referring to a poem by Robert Frost in 1923:

Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf,
So Eden sank to grief,
So dawn goes down to day
Nothing gold can stay.

-Robert Frost

 

 

When everyone else seems to be drinking lemonade.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Relapse: Part Deaux

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maybe I have unrealistic expectations

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But is it?

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

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

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

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

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

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

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

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

We’ve set a date!

Or, more accurately, so happy for ME!

I am running on fumes people. FUMES. Each day further away I get from my last Tysabri infusion gets a little worse. There are a few less hours in every single day that I can function even remotely like a human person.

On the upside, I received the news today of my date for my FIRST Ocrevus infusion. It’s gonna take 7 hours. But it’s on MAY 8 and I cannot wait!

It better freaking work. Or…
#itbetterfreakingwork #thecountdownbegins

I’ve been kind of quiet lately

There is a happy ending to this story. I promise. Stay with me.
There’s been a good reason for it, to be honest. I wanted to write a post about the situation I found myself in last Friday afternoon but at the same time, I was in a stone cold panic just thinking about the notion of sharing something so incredibly horrifying to me.

The phone call came as I was making the delightful discovery that my local boutique grocery store, Feast on Brilliant, carries my favorite ice cream brand called Jeni’s Splendid Ice Cream previously only available to me via mail order (click that link right now…do it…trust me, you will thank me later.) I was sitting in my car texting this fantastic news to my niece when my phone started ringing. When I saw that it was The Great Scott himself calling me at 5PM on a Friday, I immediately got a pit in my stomach.

“Well, Maribeth, you’ve done it again. I’m a little stumped. But based on your blood work, you appear to have tested positive for Hepatitis B.”

There was more to the conversation than that but this was the end of the place in the conversation where I felt like the same person I was before.

I had another disease? A highly contagious, communicable disease? I had a freaking STD? We won’t even get into the irony of that statement but there you have it. I was to see a liver specialist to determine more information about my new condition. TGS had scheduled it for me for 8:00AM on Monday morning (holy crap, that was fast), and we would work with her to determine if I had any chance at all of getting approved to get the new goo, what with my damaged, infected liver situation.

TGS had already spoken with the people at Genentech who manufacture and market Ocrevus. They weren’t keen on my prospects of getting approved to take the new drug. It would be very dangerous for me. I had a high likelihood of developing liver complications, maybe even liver cancer, and they didn’t like that idea at all. TGS tried to calm me by telling me he wasn’t giving up but we had to work together with my new liver doctor to make our case during the roll out of a very new medicine where there is much information unknown. “I’m optimistic,” he said. “I’m not giving up. I don’t think you should either.”

I don’t know if I can explain what went through my head in those minutes of discussion.

I was reeling, frantic, horrified, ashamed, with outraged madness raging like wildfire burning through my brain. How could this happen to me? What kind of joke is the universe playing here? Who or what cosmic entity has it out for me that mightily that things like this can keep happening to me? When is enough enough already for the love of god?

Panic would be a mild word. Desperation would come closer. I had my hopes up so very high. I know the buzz in MS circles is full of hyperbole when it comes to Ocrevus, I get it. It’s complicated and might not be all that and might be more dangerous than anyone knows, blah, blah and blah. I get it. I really do.

But my options aren’t good otherwise. Tysabri is one of the most aggressive DMT options out there and it just didn’t take for me. Dr. Scott was extremely optimistic about getting me on something new and that was a good thing because my time on Tysabri was running out. My JC Positive status always meant that I was on short time with Tysabri. I’d gone 15 months but we originally agreed that I had about a year where the risk would be acceptable and after that, it was probably not a great idea for me to stay on the drug. Fifteen months means I’m three months into the danger zone. I’m not excited about that.

And since I’m being really honest here, I was blown away by the notion that I now had a disease that I probably got from having unsafe sex in my years of wild, reckless abandon, during my insane 30’s when I took to living life like I had a little tiny death wish. Or a great big death wish.

It seemed more than a little ironic to me that the things I did to prove my lack of worth to myself, my undeserving shameful existence, might actually ruin my life. Prevent me from being treated properly for my MS. Mark me with a giant letter B that didn’t stand for Beth but actually stood for dirty whore who will infect you if you get too close.

I know, by the way, that this is insane. I know there are many more ways to contract Hepatitis B than having unsafe sex, but it seemed like the most likely option for me from all of the information I read on the many web sites, chat rooms and Reddit threads dedicated to the topic. I spent the weekend feeling like I was living in an alternate dimension where everything looked like my regular life but nothing made sense.

I told a few people. I don’t even know why I did but it felt like the kind of dirty secret you had to disclose to at least three people to make it feel even a little bit real. So I did disclose to a few. My therapist. My best friends. My closest family members. I didn’t want anyone to know really but at the very same time I wanted everyone to know! Maybe if everyone knew it would make it feel more real?

Don’t drink from my water bottle, people, and for the love of god, don’t kiss me because, Jesus, this disease is no joke. It’s highly contagious. It does horrible things to your body, mostly your liver. Based on my non-stop scouring of the interwebs over the weekend, there wasn’t a whole lot good to say about my current circumstances. I, all of the sudden, found myself full of empathy for people out there who are infected with this dastardly illness. I wanted to meet them all and tell them they were good people who probably didn’t deserve what they had to deal with. I realized that was probably impractical but, still.

I counted down the minutes to my 8:00AM appointment with my new liver specialist. All weekend, it felt like that time would never come. I had pages full of questions I wanted to ask her, not the least of which was, who do I have to tell? Who is in danger from me? Do I have to call everyone I’ve ever had sex with? I mean, Jesus, please tell me no! What about make out buddies? Did I have to spend the rest of my life wrapped in plastic head to toe like the Old Lady in the Plastic Bubble to protect everyone around me from my infectious horribleness?

Dr. Goswami, my new liver doctor, was seeing me on the actual due date for her second child. She was all of about 4 feet tall and great with child. She asked me a million questions to which I answered 100% honest “NO’s” and even she looked confused.

“We’re going to do more tests,” she said. “This test you had tells me nothing but that you’ve been exposed to the HBV virus. There are many things we can do. You may need to be on medication for the rest of your life but we can figure this out.” She handed me four pages of blood work orders, an order for a liver ultrasound, and a pat on the head and a promise that someone (not her) would probably be in touch because Lord, help her, she hoped this baby was about to be born already. She was quite adorable. I felt like I was in a shit situation but in good hands. My favorite part of the appointment?

Dr. Goswami: “Are you currently sexually active with multiple partners?”

Me: “Um, no. I’m not. I am quite frankly sexually INactive with zero partners because Jesus, who can think about all of this and that at the same time?”

Dr. Goswami: “When was the last time you had unprotected sex?”

Me: “Um…I’m not sure? Maybe…um. God this is kind of embarrassing, but I can’t really remember. Maybe 5 years ago?”

Jason the Nurse (who has been in the room with us the entire time): LOUDLY CLEARS THROAT AND COUGHS WHILE ALSO SAYING “BULLSHIT” AND TURNING BRIGHT RED.

Ok. He didn’t actually say bullshit but he did choke. He did turn a lovely shade of crimson and I wondered if he was really cut out for this whole dealing with delicate conversations thing. I have to think mine wasn’t the most embarrassing conversation he’d been privy to in Dr. Goswami’s exam room. Or maybe not?

I left there and headed straight down to the lab to have no less than 10 vials of blood drawn from my veins. They could have taken more, I would have been OK with that. I kind of liked the idea of them taking all of my blood and maybe replacing it with better, improved cleaner blood, but that was not entirely realistic thinking. I went back to work with my head still in a whirl wondering what kind of Hepatitis information I would learn from all of those vials of blood and how would I ever learn to live with this? How could I tell people?

Late-ish on Tuesday night the blood results all of the sudden got posted to my health portal. I sat in front of my computer feeling sick trying to figure out if I had the nerve to click or if I’d rather just wait for the inevitable phone calls and the list of more dangerous drugs and all of the hullabaloo that would result from the confirmation of my latest diagnosis. I’m making light of this here, to tell a story, I suppose but I haven’t been in such a dark place in a very long time. I’ve visited some dark places but this one felt really bad. Maybe because of my age? Maybe because there is so very much uncertainty in my life that even just a little more felt like too much for me to handle.

I went to work those past couple of days and acted like a normal person does, but I didn’t feel like a normal person anymore. Not even a normal person with a chronic illness like MS. I felt decidedly bad. I felt damaged.

But on Tuesday night, I did click on those results. I had to! I held my breath as the little cursor arrow landed on top of the first of 6 lines six different hepatitis tests..

  1. Non-Reactive
  2. Non-Reactive
  3. Non-Reactive
  4. Non-Reactive
  5. Non-Reactive
  6. Non-Reactive

I stared at the screen blankly. Non-reactive? Does that mean negative? I think that means negative but I’m afraid to believe that so I better Google. Yes. I think it really does mean negative, but maybe there is more to this. I had a liver ultrasound scheduled for the next morning. Maybe the ultrasound would show my diseased, pathetic liver and prove these tests wrong.I went to bed feeling muddled. I wanted to be happy but I was afraid to be happy.

The next morning, I had the ultrasound. I drove to work. Just like a normal person. Just like before. I emailed both doctor’s offices and left messages on both voice mails. Nobody called me back.

Then today, I got word from The Great Scott himself, again, but this time on my voice mail…

“Maribeth, it seems we were wrong. My first impression is your first test was a false positive. I have to investigate more, however, because this is deeply concerning. I need to find out more about how this happened. I will be in touch, but the good news is this is good, very good news. The bad news is we probably caused you a very fretful couple of days and that is just not good. I am investigating with the labs and will get back to you as soon as I know more.”

In an email I received later this afternoon, it was explained further that the particular test the drug company requires for Ocrevus is so sensitive, it has a rate of more than 50% false positives. TGS and his team were unaware of this before this experience with me, but in his investigation and discussions with the liver specialist he was enlightened. He ordered this particular test originally  because it is the test that is required to be in the Ocrevus Study. TGS wanted to apologize for “making me go through this. With a brand new drug we are all learning about this drug and the requirements together.”

“That being said, two good things came out of this–1. Your liver is fine, the second set of testing verifies this. 2. We can move forward with getting you switched to Ocrevus. I know for a fact, Nurse A is working on our Prior Authorization as I walked back to the Infusion center and informed her you were approved to move forward with the medication.”

So…there is a lesson to be learned here. Lots of lessons really.

  1. Don’t panic until you get more information.
  2. Don’t assume you’re a bad person who deserves the bad things that keep happening to you. You’re probably not. Nobody is.
  3. People have a lot to deal with. From what I learned about Hepatitis B in my mad lost weekend of research, I can tell you that the people who have it suffer badly not just from the impact of the disease itself but from the incredible burden of being judged harshly by so many people all around them.

I will be more empathetic to all people who suffer. I will be more empathetic in general. People all around you are dealing with heavy shit. They may look just fine, they may look a little tired but they may mostly look just fine and you have literally NO idea what they are going through. None. Zero. Nada.

Don’t be judge-y. Don’t be cruel. Try to understand. Oh. I also learned to never forget that there can always be a false positive! I never believed in such things. I thought I deserved all the new bad things that were happening to me on top of the bad things that were already happening to me and you know what? I didn’t. You probably don’t either. Nor does that lady sitting across from you on the bus.

Be kind. Try to understand. People are dealing with a LOT and even if you can see it, it’s worse than what you see, I promise you.

Be kind. The end.

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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A little love…for me

I’ve written before about how bad I am at optimism.

I know it’s nothing to be proud of. I know our thoughts have a direct impact on our lives and how we experience the world. I hate being so hyper realistic bordering on pessimistic. I really do. I just can’t seem to get myself to the place where I can allow myself the kind of peace that is supposed to come from thinking happy thoughts.

But sometimes? Sometimes one or two positive thoughts sneak in at the strangest possible times. Like today, for example. I am going out on a limb of positivity right now to make the following bold claim: I think the walking drug works for me.

There. I said it.

I have no idea how two little pills every day could have such a magical effect. It makes my brain hurt to think about how a chemical substance could trick my brain into thinking I can walk like a normal human again. But it appears to be doing just that. My legs feel like legs instead of what they usually feel like (something akin to alien limbs controlled by a will entirely their own that don’t like to bend or move properly).

According to drugs.com, Ampyra “is used to improve walking in patients with multiple sclerosis (MS). Dalfampridine produced an increase in walking speed in clinical trials. Exactly how it works is not known. It is thought to increase nerve function.”

“Exactly how it works is unknown.” Huh. That’s not shocking to me at all. What’s shocking to me is that it actually seems to be working at all. The Great Scott told me that some patients experience positive results from taking Ampyra but not all. He said there was about a 30% chance it would work for me. That didn’t sound like the best odds to me. But goddamn, if it doesn’t appear to be working pretty well. I might be the 30%! I almost can’t believe it.

Now I’m also characteristically realistic about this potential good news. I know it might not work for long. It might become less effective over time (TGS warned me of that). Some other horrible outcome could rear it’s ugly head at any time and I’d just have to deal with that. Drugs are complicated.

For example, Modafinil, the other wonder drug that I take daily for my overwhelming fatigue is definitely messing with me and not in a good way.

Modafinil works to keep my brain alert and it really does just that rather magically. But it also seems to make a lot of things work a little too well because I’m all of the sudden anxious, full of anxiety, unable to stop obsessing over strange things, maybe even a tad paranoid. It also messes with my sleep – this cannot stand. I need all the sleep I can get. I find it hard to read. That, too, is completely unacceptable. I’m struggling to finish book #4 of 2017 and this is not helping me reach my ultimate goal!

I wanted the drug to give me energy not make me hyper vigilant and notably crazier than normal. I’ve decided to lay off of it for a few days to see if I notice a change back to my version of “normal.”

The thing about the human body is that it is a vast, complex maze of interconnected systems and parts that nobody really truly understands. They try. They really try. But most “medicine” is an elaborate process of trial and error. Doctors know a lot, I realize that, but even the best ones will tell you that what they don’t know boggles the mind. The fact that I currently take more than one drug daily that uses the phrase “exactly how it works is unknown” to describe its mechanism of operation in the human body is a little bit mind blowing to me. But there you have it.

There are more drug adventures coming for me in the near future.

I have my last Tysabri infusion in March and then I am going DMT-free for two to three months. I will be on ZERO major disease modifying drugs for two to three months. This fills me with fear unlike any other I’ve ever known. I’m having horrifying visions of myself crawling around on the floor or sleeping 15 hours a day for three months. Then today while chatting with Cheryl, my therapist with MS, a different thought popped into my head..another oddly optimistic thought.

Maybe I will feel better without the big bad drug. Maybe it’s making me feel worse while it also appears to be keeping my disease in check. The side effects of the DMTs are hard to separate from the actual symptoms of MS. The Great Scott doesn’t think this current drug is the one for me. He seems much more optimistic about the potential for the “new goo,” as he calls it.

The whole process of modern medicine is about trial and error! You just keep trying and trying until you find the magical combination of things that work for you.

Instead of feeling frustrated by that fact, like I usually do, it sounds oddly hopeful to me tonight. I’m giving myself a little Valentine’s Day love and allowing myself to believe that the right combination is out there for me.

I will find it. It will help me. I mean, look at me! I seem to be walking.