I’ve got nothing

So let’s try this thankfulness thing…

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

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

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

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

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

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

Things I am thankful for…MS Edition

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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

 

 

A visit with the wizard

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

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

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

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

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

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

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

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

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

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

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

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

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

I actually made TGS laugh!

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

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

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

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

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

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

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

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

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

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

And SCENE.

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

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

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

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

One more tiny piece of news.

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

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

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

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

Life on the inside, ep. 1

I have no choice but to laugh. Kind of.
So for those just catching up, I took a bit of a turn for the worst earlier this week. I woke up on Thursday to some significant vertigo that was quickly followed up by violent vomiting. 

I heard the MS Club rule book in my head, I forget which rule it is but it states that no new symptom can be attributed to an exacerbation of your disease unless it lasts for more than 24 hours. So I tried to wait it out. This may not have been the best choice. As the day went on I became basically bed-ridden. I couldn’t eat or drink without violently being ill. I called for help. Mostly because I couldn’t feed my cats or scoop their litter because stairs were pretty much out of the question unless I had a straight up death wish. Clearly, my priorities are straight. 

My mom and my sister came to my rescue. It was after a few more hours then watching me lay in bed moaning that we decided to wait it out. My sister came and slept on my couch (where she promptly was set upon by my very many felines who wanted to play with the new girl in town). When I woke up the next morning, I couldn’t quite believe it was possible but I was much worse. No food stayed down. No water even stayed down. After a call to quasi-nice Nurse Carol, we decided a trip to the ER was in order. I couldn’t stand up without vomiting or falling over, so we had to call a freaking ambulance. I mean…good gravy. A freaking ambulance. 

Since then, I’ve determined some important life lessons…

1. Ambulance guys know their shit but the journey getting this less than petite lady person out of the house felt nothing less than death defying. It’s humbling when it takes 5 grown ass men to move your limp self to a gurney. Ego hits! They just keep coming. 

2. The ER via ambulance plan itself was definitely the best option. No problem getting in and situated in my emergency cubby thing. One can’t quite call that a room. It was a cubby. With five other cubbies full of people at least as bad off or worse than me. 

3. The “bed” in the ER cubby was barely a cot made of royal blue rubber. It smelled like a new pool floaty when you take it right out of the package and you need to blow it up? It smelled just like that. It was extremely un-bed-like in any way. 

4. It’s a good thing I had that nice bed because I was to be laying on it for almost 9 hours. Apparently the hospital was “full to the gills” based on many heat related health issues all over town. Yet another reason to love the heat! My sarcasm skills are going to a whole other level around now, in case you were wondering. 

5. Because I’m a woman of a certain age with severe vertigo, they had to rule out stroke. Even though I have MS and it was a pretty good bet what was happening…CYA levels at hospitals are off the hook. So I had several very wild and wooly head manipulations by several different neurologists. Then a CAT scan (another first!). And still not admitted. Back to smelly the blue raft bed. 

6. MRI is scheduled, then, at 9:45pm. That appointment gets rescheduled no less than 5 times because of “lack of proper transportation.” Around 10pm, though, I am joyfully told I’m going up to a super comfy patient room. Finally! Some relief from the blue puffer bed. 

7. Or not. My hospital bed is also covered with the blue pleather-like material covered in a fitted sheet, a definite improvement, but it gets so hot in the night I seriously fear I may self combust in the hospital itself. 

8. I explain to the night nurse that I’ve not had food or water in my system for almost 35 hours and I’m feeling like I need both stat. “Oh…I’m so sorry but you’re on the stroke protocol and that means no food or drink tonight.” What!? I promptly lose my shit. “Call someone,” I all but bellow. “Im dying over here.” She calls. It takes three more calls to find out they’ve made a mistake. They can give me food. 

9. “Food” is a better term for the world’s saddest looking turkey sandwich and a cup of apple sauce. I haven’t eaten apple sauce since I lived at home and my mom made hers from scratch. I scarfed up that nasty purée faster than you could whistle Dixie. That’s how hungry I was. 

10. “New plan! No MRI tonight. But we’re gonna start you on Solumedrol tonight and start the drip at midnight. The neuro thinks this is more likely an exacerbation of your MS.” Omg, ya think?!? So they pump me full of crazy energy drugs at midnight. I asked for a sleeping pill. “Pharmacy never responded.” So yep. I was up pretty much all night obsessing about how horrible my “bed” actually is. 

11. I cannot get out of my bed without help. To pee even. I stand up? I fall over. The night time nurses aids each weigh about 75 pounds soaking wet. “Hold on to us,” they twinkle at me, “We have you.” Um…just. Sigh. 

12. Thursday, the day I took ill as they used to say in old school novels, was to have been a shower day. Chew on that for a moment. I’m officially categorized that thing that my dearly departed husband used to refer to as a “dirt pig.”

13. People keep complimenting my “awesome hair.” I am being punked because I am desperate for a hair cut. My hair is the shape and texture of baby doll hair (see number 11). And because of the Great Bleach Debacle of 2017, my hair is quite literally half dark brown (riddled with gray) and half bright white blonde. It is not nice to punk sick old ladies. 

14. Secret deodorant works for a really long time without reapplying. Pass it on. 

15. Hospitals have these amazing things called “bath wipes.” They are heated. They have soap in them. They require no rinsing. I am planning to steal many of these wondrous things on my way out. I feel I deserve them. Hell. I’ve earned several packs of those wonder wipes. Easily. 

16. Mostly because after my MRI at 8am this morning we’ve generally concluded that I do indeed have a new lesion on my vestibular spine where my spine meets my cerebellum which is where balance is controlled. Hence the general hideousness of the last few days. Hence the IV steroids. HENCE ALL OF IT. 

17. Nuerologist #5 tells me they are going to keep me at least a couple more days. More IV steroids. Then she asks me, “what is your living situation at home.” I didn’t even think before I answered, proudly, “Oh, I live alone.” 

18. WHY DIDN’T I LIE?!? “Oh. Well then. We will have to get you in some PT before we let you leave then. We need to be sure you can handle yourself at home alone.” I mean, if she could see me at home basically every day of my life they may have committed me to inpatient care a real long time ago. FML (to be blunt). Honesty is FOR SURE overrated. 

19. If you’ve ever had IV Solumedrol you know that shit taste it gives you in your mouth. I asked for something to suck on – hard candy, life savers basically anything to cover the horrible metal taste in my mouth. Guess what? Yeh. Exactly. In a hospital where they administer this stuff all of the time, they have nothing. Zero. Nada. 

20. I’m gonna smash that chocolate pudding. Even if it does taste like bad metal. 


In short, I’m gonna get fat on fancy carrots, chocolate pudding and full calorie ginger ale for the next couple of days whilst being held hostage at Allegheny General Hospital. 

The one silver lining? I finally found a Law and Order channel on my tv. It’s not SVU, I couldn’t get that lucky.  But I’m learning to love Jack as ADA again. There really always IS a silver lining. 

(Sarcasm game? ON POINT).

Also for everyone who has reached out in so many ways, thank you. Every single one of you. This would suck even more without you. 

When everyone else seems to be drinking lemonade.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Another day…another missive from The Great Scott

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

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

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

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

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

Dear TGS:

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

Signed,

BethyDesperatelyDark and Getting Darker

 

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

Three days later he called me. THREE DAYS.

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

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

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

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

I just said I might be getting a walking aid.

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

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

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

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

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

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

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

The party was awesome (the party was horrible)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s the reality, folks.

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

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

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

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

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

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

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

It’s too hard, now.

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

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

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

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

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

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

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

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

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