I finally had a massage

That one time a miracle occurred and I got a shot of all four felines in one frame. There from the top are Ivan (14), Owen (12), Fred (14) and Roger (9). My furry matching menagerie.

(READER NOTE: If you are a cat lover, or any kind of animal lover for that matter, this might be a post you want to skip. I’m serious. I can’t bear to think I’ve shared something that would upset anyone reading. Come back next time. Seriously. I won’t be hurt. I wish I didn’t have to write this one. I felt like I had to. Also, to be clear, all four of my beloved felines pictured above are all very much still with us. Happy as little clams. I promise.)

I had a massage yesterday. A very long over due massage.

I’ve been having some super irritating pain in my neck and back. I’m not MS-savvy enough to know if this is disease related or something else related. I’ve been seeing my massage therapist Michael, for over 18 years. I found him when I moved into my neighborhood at a salon very close to my house. He has become a friend and not just my massage guy. He has an awesome wife that I also really like a lot. I am usually an every other week massage customer so he might technically be my longest regular relationship with a male person. (It totally counts!)

But, I haven’t seen Michael since before the relapse in late July. That’s way too long. My back and neck (the area I affectionately refer to as my hump) has been throbbing with pain for weeks now. Of course I have no idea if it’s MS-related pain, or some other pain related to any one of a million different things. Even after the massage I was sore all night and into this morning. Tonight it’s a bit better. It doesn’t feel nearly as bad as it did yesterday but it’s still pretty sore.

I shared my slew of great news while laying face down on the massage table for optimal back and neck access. My news sounded a bit like this…Relapse, hospital, being home bound, more steroids, more steroids again, dead father, funeral, aftermath, finally getting back on my feet, kind of, the end. A veritable slew of fantastic news that I am growing weary of telling. I’m just going to make something cheerier up for the next time I see someone I haven’t seen in a while.

Then Michael showed me a picture of his new kitten Javier.  We always talk about our cats when I visit. Michael has two cats. Max is 0nly 6 years old. I stupidly asked how he was managing with three cats now. He said, “Well, that’s kind of a terrible story.” And I said, “After my litany of terrible news, how bad could it be?” I mean, I’m a realist. I had to know. I think about how I will handle the death of one of my cats all of the time! It’s morbid. And impossible to stop doing. Turns out that was a stupid thing to say. I was thinking to myself, “You need to hear this. You have a house full of old cats. You have to be prepared. It’s inevitable.”

So Michael told me what happened to Max.

Michael woke up one morning and heard his two cats running around the apartment, chasing each other and playing. That wasn’t unusual at all. He laid in bed listening. Then he heard a very strange hissing. He said it surprised him because his cats never hiss at each other. So he got up to look. His cat Max was laying on the floor panting with his tongue laying out the side of his mouth. Something was obviously very wrong. He started making growling and mewing noises as he tried to get to his feet but his entire back end couldn’t get off the ground. He was attempting to drag himself around, moaning and dragging his legs behind him on his belly, propelling himself forward with his front paws. Michael said it was a horrifying sight and the sounds were terrifying.

Our collective vet is literally three minutes from Michael’s apartment (also close to my house). He saw that it was near 8AM and he decided to get to the vet the second they opened so that he could decide if he could make it out to the emergency vet hospital, that is at least 30 minutes away from where we both live. He somehow got Max into a carrier, Max screaming the the entire time. He was biting at the metal bars on the carrier, making his teeth and gums bleed. Michael said he’d never heard those kinds of noises coming from a cat and he was freaked out. He’s a cat person. He’s had many cats. For him to be shaken like that it had to be pretty awful.

When Michael got inside the vet office, the receptionist told him there was no vet there until 8:30AM. The sounds coming from the carrier were getting worse, as was the blood coming out of Max’s mouth from trying to bite on the metal bars of the carrier. Michael opened the door to attempt to comfort Max. But there was nothing he could do to make the wailing and panting slow down. While his hand was in the cage attempting to comfort this poor cat, Max clamped down full force on Michael’s hand and bit his thumb hard. Now, Michael is bleeding too, all over the vet and all over the floor. Thank god he was called back to the examine room more quickly than he thought (thank heavens for early risers).

The vet tech saw what was going on and brought Max to the back immediately to be looked at. Michael just sat in the little exam room all by himself, feeling sick from both the blood and pain from his hand and the condition his cat was in. The vet tech had given him a cloth to hold on his bleeding hand to stop the blood.

The vet came into the exam room. Thank god it was the woman vet we both tend to like most. She explained that Max likely had a pulmonary embolism. He was paralyzed from his waist down and in a great deal of pain. There was only one thing to do. She asked if Michael wanted her to bring Max into the exam room for the injection. He, of course, said please, yes.

She walked back through the door in the exam room to the back of the facility where the procedures happen and was back in the exam room within less than a minute. She said she couldn’t bring Max in. He couldn’t be moved without causing him excruciating pain. She would have to bring him to the exam room once he was gone. By that time, Michael’s wife Mary was there with him. They both sat looking at poor Max wrapped in a soft blanket on the cold steel exam room table, finally quiet. Hearts broken.

I was on the massage table face down as he told me this story and I could feel myself getting anxious. What would I do? How could I ever handle such an event? How could I manage to do all of that if one of my very large cats is ever in such a situation? Would I even be able to manage it? Who would I call? I would probably call my friend Sandy but she’s not at my service at the drop of a hat. Nobody would be or should be. I might call Alex, my nephew who is my go-to helper…I honestly don’t know what I would do. It was making me sick just thinking about it. I was grateful to be face down. I don’t know what my face was doing with all of this running through my head watching tears dropping to the floor from the center of the head rest.

All I could think about all the rest of the day and into that night as I lay in bed still thinking about it incessantly, was what would I do in a similar situation? I tried to send a wish out to the universe to allow my kitties to go quietly in their sleep, when they have to go. Let me just come upon them once it’s over. Let me not have a dramatic final panic (like Michael went through) that I’m not sure I could even begin to handle. Michael is a strong guy – physically and otherwise. He’s not broken. Like me.

I can’t get it out of my head. I thought if I wrote it down it might help. It usually helps. It’s not helping as much as I’d hoped it would. But I had to try. I often feel lately like I have the world’s shittiest luck. You’ve probably read those exact words in previous posts. It’s a problem I have. The thing is, that’s so selfish and ungrateful of me. I have so many things to be grateful for even now. So many things have gone my way in this life that I should never have one day where I am not brimming over with unmitigated gratitude.

I feel like this disease changed everything almost instantly. Now, I’m the “only-bad-things-girl” and it scares the shit out of me. Why would the deaths of my cats be anything but horrific? That’s usually what I get these days. I have this certainty that I can’t shake. Only bad things. Only bad things. Only bad things. That’s not true, is it? It can’t be true.

That’s some major catastrophic thinking right there. I can hear Cheryl, my therapist, in my head and I know she’s right (even virtual Cheryl is usually pretty right on).

I need to shake it. Believe in something good. Believe in good outcomes and you will get good outcomes. It’s so freaking hard after nearly two years of my health going pretty steadily down hill before my very eyes. It’s really, really hard. How can I find my own faith in good things? How can I start believing that good things will start happening to me once more, if I can just get through this part. This shitty part. I need to make a plan. I need to figure out how.

Actually, I’ve done something entirely different. I’ve decided to try not to think about it at all.

Ha! How mature of me. My “plan” consists of this: Deal with that horrifying thing when that horrifying thing happens. Stop anticipating horrible things happening. Start believing that good things will. That’s usually my only and best option. Sounds easy.

It’s not.

(Sincere apologies to all of my cat loving readers…I know this one was painful to read. I wish almost wish I hadn’t written it. But I had to get it out of my head. I hope you will forgive me.)

When words fail the writer

Rest in peace, Daddy. You did good.

We all get there eventually, I guess. We all get to the point where you are just so blind with anger and frustration that you don’t even have words to describe how angry you really are. I’m a word girl. I’ve been struggling with words.

I think I may have taken the expressway to my current state but as of this middle of October, I am personally ready to put a lid on 2017. I know, I know. I hate to curse myself too, but hell, I’ve made a career of it thus far and still I’m here. So, go on, Universe, give it to me. Pour on a load more misery, a tad more challenge, a little more what the eff. Oh wait. You already have because you’re kind of an asshole.

I remember that now.

I hate feeling sorry for myself. I like to be the plucky, looking-always-on-the-bright-side kinda girl you all have been getting to know (or for some of you, who have known me for years and years) but at times, more times than I’d like to admit so far in 2017, even I get to the point where I have had enough. I have had enough.

This disease is a bitch. She lets you get all positive for like 20 minutes then you find yourself calling a friend for an escort to the office from the parking garage just across the street because you get dizzy when you actually try crossing the street (looking both ways…easier said than done for me at present).

You think your relapse has come to an end…but shit keeps going awry and life keeps happening (and eventually death happens too) and whoa. Is it possibly the truest statement ever made by some very wise and sage and learned medical professional that stress can magnify the symptoms of multiple sclerosis? Why, yes. Yes, it is. Stress is the devil.

I laugh in the face of stress! Or, I should say, I used to. Now I am stress’s bitch. Stress turned my legs into tree trunks, my body into a throbbing ball of intense pain, trembling like a rubber band stretched a little too tightly, ready to snap…and on top of that, drugs designed to keep me awake actually made me manic. Manic. At the funeral home where your beloved father is laying at rest in an open casket. Super appropriate. Thanks Provigil. You kept me from falling over but you also made me into a fast-talking, loud-talking, super-energetic ball of obnoxious at my own father’s viewing. Probably not the tone one should have going into such a horrible, sad event.

By the end of the night (it lasted five hours…just five hours where I was mostly able to sit) my entire body was shaking. I fidgeted around up and down, down and up, changing positions in my chair just trying to hide the pain I was in, weird smile plastered on my face. Once it was over and the people were gone, I couldn’t hide my shaking hands and my trembling legs. I barely made it to my car. I knew what was coming.

On top of being incredibly sad, after saying good bye to her husband of 56 years, now my mother would be worried about me on top of it. I thought I could hide it better. I was wrong. I used to be able to fake just about anything! Now I can’t. I had to arrange for help when I finally got home getting to my house from my own driveway (much less than the dreaded 100 feet) because there was nothing to hold on to between my car and my house and I didn’t think I’d make it. I’m very lucky that I have people in my life who come running when I call for emergency help. Who are willing to hug me for a while as I sit in my kitchen and sob, like a crazy person, not because my father was gone but because I couldn’t even not think about MS long enough to realize that my father was gone.

MS is always and will always be hanging around my neck like a fucking anchor, waiting to drag me down to the bottom where I probably won’t be able to get back up once I’m there. Even when everyone tells me it will get better! Stay positive! It won’t be like this forever…I hear the little voice inside of my head saying, “Um…but what if it is? What if it just keeps getting worse?” I see that happening out there too, folks, and this isn’t looking good from where I’m sitting (un-showered) trying to blend into the scenery so nobody notices. What if this is as good as it gets?

The next morning after the viewing, my mother had already texted me before I woke up around 9AM. Mass was at 11AM, the latest our church would allow for a Saturday funeral, and my mother texted that she wanted to talk to me and please call immediately when I woke up. I knew what was coming. She wanted me to know that she didn’t want me to go to the funeral. She said, “You’ve already done what you could do for Daddy, Bethie, and you can’t do any more. That was too much for you last night and nobody would judge you for not coming least of all me. Please go back to bed. Rest. Come to lunch later if you’re feeling up to it, but get your rest now.”

I try to do the right thing, generally speaking. I knew it was going to stress her out if she saw me struggling to walk into the church. I told her I’d gotten a ton of sleep the night before (I didn’t…thanks Provigil) and I was feeling much better. I told her I couldn’t bear to not attend my own father’s funeral. I asked her if she would be OK if I came because I really wanted to go. I didn’t tell her this part though. I didn’t tell her how fucking sick and tired I am of always being someone to worry about! I’m tired of wanting to help, but adding to the stress of others because they clearly know I can’t help (anymore). I’m the help-ee not the help-er and I fucking hate it. Also, if I ever used that kind of language with my mother she would beat my ass and wash my entire mouth out with soap several times, so please don’t tell her I have the language of a truck driver because it’s only getting worse the longer I have this cursed disease.

I didn’t do the right thing this time and it was selfish.

I got to the church uber early so nobody would see me walking in. I got myself into the first row of pews and sat down and tried to look calm and serene. When my family got there, we hugged, we held hands and we went through a ritual none of us are really all that into anymore but our father was a long-time singer in the church choir and would have had it no other way. We all realized at different times how much we missed hearing him on his “parts” of particular songs. We all had our own memories of Daddy singing in church. For me, it was when he sang the Ave Maria at my wedding. For my sister and brother, it was probably something completely different but our Dad loved to sing and he sang like an angel.

The bottom line is, I’m still recovering from that funeral. Something that should not be about me and how I feel, was about me and how I felt because I have this godforsaken disease that makes me needy. I cannot be a helper very often, or at all. If I was a good daughter I would have stayed home and slept more. I decided to be defiant and try anyway. I have allowed this disease to take so many things away from me. It’s been like watching tiny parts of myself erode so subtly that sometimes I don’t even realize that part is gone until weeks or even months have gone by since I last noticed it wasn’t there. I am always trying to get to know who I am now, because it just keeps changing. Little by little. I don’t even recognize myself most of the time. I couldn’t allow this stupid, infuriating disease be more important than my father’s funeral. I needed to be there.

I did my best and I made it through the mass and the after-mass lunch. Then I came home and slept for almost 24 hours. I expected that. It’s the “MS-tax” or so they call it, and I was prepared to pay it. What I wasn’t prepared for was waking up dizzy again. Or throwing up a bit more. Or being thrown back into drunk walking like I’d been doing during my relapse.

That whole scene I described above where I had to call the world’s best friend to be not only my friend but my human walking assistive device, happened the Tuesday after the funeral was over. I’d used my official “bereavement” time off and I felt the need to show my face in the office. I knew when I woke up throwing up that it was probably not the best idea. Goddammit I had showered the day before and I was clean and I would not waste a clean day at home! I drugged up, dressed myself and pushed myself out the door.

That was also NOT the right thing to do. I should have done my afternoon of telephone meetings from home instead of sitting in my office with the door closed where I wouldn’t be seeing or interacting with anyone there anyway. Ever since that Tuesday, I find myself in bed by 6:30PM at the earliest, 8PM at the latest. I’m still super shaky. It’s still too much effort to stay straight. I’m still wobbly and dizzy and sometimes I get sick too (not so much, though, I think that part might be over now). It’s not as bad as it was during peak relapse, not even close, but it’s not good. It’s like relapse-light? Is that a thing?

I’m sure it is. I’m sure this is all very typical and nothing to be alarmed about and not the way things will be forever. Or is it? The bottom line is that I can’t count on being able to fake my way through the hard things anymore. It might not always be this bad, but it will always be just bad enough to be a factor that I need to actively consider. I can never plan to go anywhere, not even to my own father’s funeral, without thinking of my MS and how I am going to deal with that on that particular day. I’m tired of myself. I’m tired of being so high maintenance and needy. I’m tired of having multiple sclerosis.

Believe me. I know. It can (and probably will) get worse. I should be grateful. I am grateful in my own ways. I make sure the Universe knows it, but sometimes? Sometimes I’m too angry to be grateful. I’m just so pissed off I could spit. It had been a few weeks of feeling this way, through my father’s final weeks, and I hated every minute of having to think about ME before I thought about HIM or my mother (or my siblings). I’m a burden before I’m officially a burden. And I’m over it.

What my mother said was true. I had done what I could reasonably do for my father before he died. Admittedly, it wasn’t much. I would pop over and see him. Chat a bit. Help him open up the Werther’s hard candies my sister brought for him. He loved those damn candies.

Even when he was struggling to talk or fighting to find the right words or struggling to breathe, when he saw me the first thing he’d say was, “How you doin’ today kid? You ok today?” He was worried about me and how I was doing knowing I had been struggling lately with my MS. And every single time he asked I lied and told him, “I’m doing OK today, Daddy. I’m doing pretty good. I’m going to be just fine.”

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.

A visit with the wizard

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

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

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

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

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

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

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

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

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

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

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

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

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

I actually made TGS laugh!

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

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

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

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

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

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

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

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

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

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

And SCENE.

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

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

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

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

One more tiny piece of news.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I guess I will too.

Don’t call it a comeback

I got cocky again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life on the inside, part deaux

So as most of you already know, I was rudely awakened at 3:45am with the arrival of my first roommate. One of only three such roommates I’ve ever had in my life who were not related to me in some way. 

It was rude. Bright lights. Outside voices asking about symptoms, the ins and outs of advanced directives, the ordering of snacks, the assemblage of various monitors and beeping apparatus. So. Yeah. No sleep again for this girl. My roomie is really nice. But now I have to hate her extra large because she’s getting out of here at 2pm. Today. Why?!? Why not ME?!? And yes. I am a bad person. But at least I admit it. 

I made some progress today, however. I posed what I thought was a perfectly logical and valid point to my neuro attending team. Why in the world would anyone give any human being a mega dose of Solumedrol at midnight? I mean, that practically ensures a sleepless night when sleepless nights are already likely based on my random self inflating bed with a motor located right under where my head lays each night. It’s like a water bed but with air. It gives me straight up motion sickness. But that is neither here nor there. Solumedrol at midnight! I’m no doctor. But that just seems like every kind of bad medical idea anyone’s ever had. 

The answer? Well. Because that’s what time the order went in. Oh. Right. That makes total sense then. 

My answer? So change the mother humping order you fools! I want my mega roids at 6am and 6pm. Period. There will be one day where I’m on a little extra roid juice, admittedly that’s not ideal. But want to know what’s an even worse idea? Getting pumped full of steroids and also expecting to sleep. Want to know what makes all MS symptoms worse? Two things. The horrible relentless heat. And, lack of proper rest. 

Proper rest tonight, in particular, is critical. 

Tomorrow I am being evaluated by the PT team. It’s up to them entirely whether or not I get released after my last Solumedrol infusion tomorrow at 6pm OR if they decide I am a danger to myself, they will keep me here until they can find me a room with an in-patient rehab unit. 

Oh. Hells no. Hell hell hell NO. I am not allowing that to happen. I’m adamantly opposed to in-patient anything after this debacle. No way. I’ll use my roid induced strength to stage a violent coup resulting in me wobble walking to the nearest exit and flagging me down a damn Uber. 

So I’m gonna take as many drugs as I can to help me sleep, even if I have to have family members sneak them in via body cavities, so I am well rested and not quite so wobbly tomorrow for my big test. I’m definitely doing better. I mean I can probably walk to the bathroom myself if they’d just let me. I haven’t thrown up in 24 hours at least. I’m practically an elite athlete right now in MS terms. Maybe ginger ale is some kind of magical life elixir and I just never knew about it before. 

I’m making up a new song. It’s by Beth Street and it’s called “No Wobbly” and it goes a little something like this…

I like the way you work it (no wobbly), girl ya got to walk it out. I like the way you work it (no wobbly) girl ya got to balance out. She’s got dirty hair rolling with the phatness. Solumedrol giving her the head fits. Street knowledge by the pound. Seen ’em close up with her face on the ground. But got to get her home stat so no wobbly’s where it’s at. 

My most sincere apologies to Blackstreet. But shorty’s got to get home before she loses her damn mind and Wobblies stand between me and that goal. All no wobbly vibes coming my way will be graciously accepted. 

I will not be an in-patient anywhere ever again as god is my witness. 

So I have to roll now. I have to plan this going away party for my roomie. Drink ALL the ginger ale. Load up on roids. (I was told I may require a xanax after my short term roid loading that has to happen today to get me on my new schedule. That should be interesting.)

And tonight is turkey dinner. I mean who’s really winning here? Turkeys are great walkers! It’s gotta be a good sign. 

#nowobblies

Sing it with me, folks. The puffy village is calling my name and I must get back to my precious before I go all Gollum on some PT hobbits tomorrow. 

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.

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.

Broken eyes, broken brains and the things we don’t talk about

That’s me trying to hide in the back. I was probably 12 or 13 – about the time in my life when someone called me “fat” for the first time. Also, obviously, one of my more awkward phases.
It’s Sunday and I find myself muddled. Again.

I think it’s the weekends where I find myself with lots of time to do nothing, that I struggle. Sometimes it’s not that I have the time to do nothing, it’s that my body demands that I do nothing. Even though I try to embrace this reality, this physical need for rest, I can’t help but resent it. The best part of this is that I usually/used to/generally live for rest and doing nothing. The struggle against it is what I find so odd. And off putting.

Ideas come into my head randomly that I find myself wanting to blog about but I’m struggling to find the right story, or way to tell the story is probably more accurate. So I don’t write anything. It’s easy to write about the details of my newly diagnosed MS experience. The symptoms, the processes, the frustrations and the health system dysfunction because that shit practically writes itself. And there are so many bloggers out there writing about that very thing, sometimes I feel like just another voice in a sea of voices that really all sound the same.

It’s the other stuff I want to write about but find myself without the words.

Why do I feel so ugly? Why do I hate looking at myself? Why do I have a face full of zits like a 13-year-old-girl going through puberty (all while being a recently turned 50-year-old woman who is looking more wrinkled and more haggard by the minute)? Why do photos of myself make me cringe? Why do I avoid looking at my own reflection in random mirrors or plate glass windows? Why do I just want to hide? Do I feel ugly, so I look ugly? Is this a mind over matter kind of thing? Why can’t I even take a selfie that doesn’t make me want to throw up? I can usually find my beauty in a selfie – but only in a photo I take myself. I can usually feel OK just realizing that what I see in the mirror and what other people see in the actual world are not the same thing (my main motivation for ever taking a selfie at all! Well that and good make up.)…but lately I find myself hitting ‘delete.’ I even loathe the pics I take myself, these days.

Why do I find myself thinking about my single status for the first time in…years? I have lived alone, mainly alone, for almost 15 years. I genuinely love my life, my solitude and mostly my freedom to do exactly as I please. Why do I struggle to admit, (even to myself), how long it’s been since I’ve had sex? Or even kissed a boy? Why do I find myself afraid of growing old alone when I had formerly accepted, more like joyfully embraced, this fact almost ten years ago? Why do I suddenly feel like a freak for preferring my solitude? Why do I struggle to find value in my life lived alone when it was never a problem for me before?

What is even going on up in there, inside my skull? My broken brain shouldn’t be this broken. But it is. Obviously.

The only way I can explain any of it is to explore my old ways of dealing with stress. The Old Me Method you might call it. It was pretty simple (and not entirely rational or even reasonable, but I’ve never claimed to be entirely sane). 

In times of extreme stress, or even just regular crappy days, I used to be able to fall back on “pretty”. Pretty was what I was. It was easy. I might not have been able to see it myself when I looked in a mirror but enough people convinced me of it over the course of my life on this planet that at one point I just decided to accept their words as true and ignore my own (apparently broken) eyes. Even when things were falling apart, I still had to be grateful because I was healthy. I was better than healthy: I was pretty. And being pretty meant pretty much everything (pun fully intended).

But I wasn’t thin, which was a struggle for me because my entire life I equated skinny with pretty. You couldn’t be one or the other you had to be both, in my opinion.

How could I be pretty if I wasn’t also thin? The answer was, I couldn’t. Or, worse, I would always be the “such a pretty face” girl. You have such a pretty face! I’ve heard that for as long as I can remember remembering. I loved hearing it even though I never really believed it. I thought people lied to me just to be nice.

My first boyfriend (when I was all of 13 years old) made fun of me for being fat after we broke up. Mutual friends, who were also 13-year-old boys, told me about it so I would stop openly pining over this kid who was obviously acting like a jerk. 

My first big “real” love told me more than once that I would be “the prettiest girl on campus” if I lost 20 pounds (yeah, he might not remember saying that but I will never forget it). Many years later, my husband’s parents had many excellent reasons not to like me, in their minds. They thought I was a gold digger. They thought I was too NOT blonde. They knew I was definitely NOT thin enough to fit into their country club lifestyle and they never even attempted to hide thinking any of those things.

My first major relationship after my husband died ended with me being unceremoniously dumped for a skinny girl, who was older than me, and in my opinion not nearly as “pretty.” I had put myself on the line for this guy. I gave him my whole heart, judgement of other people be damned, and believe me, there were a lot of people judging me in those early widow days. Then he abruptly left me – while he was still living in my house rent-free, because he said he needed room. He was feeling like I wanted to “own” him. Whatever that meant. I thought it was because in his mind he found something better. In fact, he actually said these words to me himself, when I once directly asked him tearfully how he could betray me like this. He said, “She was just too good to pass up, I guess.”

The most recent “real” relationship I had was with a guy who told me over and over again that he knew I could be thinner, because he’d seen the pictures where I actually was thinner, and I was in total control over it. I just needed to eat less and work out more. Easy. What a fucking idiot. He told me it was my mother’s fault I was overweight. She solved everything with food, he said. He said these things to me over and over again over the course of three years or so that we were together while also clinging to me like a parasite, trying to change every little thing about me. All while claiming to be crazy “in love” with me. I find it mildly confusing that his current girlfriend of many years isn’t anywhere close to thin. She’s lovely, but she’s also quite normal person sized – kind of like me. Maybe he grew up? All I can say is, better her than me.

Oddly, the only relationship I have ever been in (in my entire life) where I felt beautiful and accepted just as I am, is the one that I wasn’t allowed to tell anyone about.

He was not only much younger than me (way too much by all decent standards), he was also black which would have been frowned upon in my moderately racist Italian family, no way around that. But he wasn’t just black, he was BLACK. An ebony skinned Jamaican boy almost 10 years younger than me and totally inappropriate for me – not for any of these reasons. But because I got involved with him in the process of trying to get him un-involved with another one of my married friends. I inserted myself into a situation with the intent of making something right. It didn’t work, and somehow, we started spending time together. Lots of time. Quality time.

Don’t even ask me how that happened, it was really just twisted. But happen it did. I’m still being ostracized for it by those friends from my old married life. I honestly didn’t care. I knew what I was doing. I was happy. I felt beautiful and accepted for the first time in my life. It was worth being labeled a bad friend! I knew this relationship wouldn’t last (for very many practical reasons) and I was also OK with that. I didn’t really want a long-term relationship. I was mostly happy alone. But I loved it while it lasted and there’s no way around that one. How messed up is that?

What’s stranger to me is why can’t I stop thinking about things I thought I had dealt with years and years ago. I was happy! None of this mattered to me anymore. I worked my way through it. I never tried to run away from it. I faced all of it. I worked through it! Even Cheryl will tell you so. Cheryl has been with me through it all, guiding my work, making sure I wasn’t just playing. I was figuring it out. I won client of the year! More than once. It’s one of the things I am proudest of in my life (even though it’s not really a real thing, and I’m quite sure she says that to all of her patients – she can’t fool me). But I’m still quite proud.

Then suddenly out of nowhere, I get diagnosed with a chronic disease, my whole life changes in the course of a year, and all of the sudden all of this old, messed up shit starts flooding back…along with this hideous acne. My face is so messed up right now that my skin actually hurts.

It’s like I’m the Old Me again (in the bad ways, not the good young and fashionable Old Me) but without the freedom or the advantages Old Me had for disguising myself (those would be things like drinking too much, lots of sex, random dangerous behavior, really expensive and impractical shoes). I didn’t fear being alone because I knew I sincerely preferred it that way. But the truth was that if I decided that I wanted to be with someone, if I ever felt a little like “company,” I could do that any time I wanted. Hell, my cell phone was chock full of willing participants who I could summon with a quick text message (“you home?”) whenever I wanted to not be alone for a few hours at least…then I’d be blissfully happy to see him go.

I don’t feel that way anymore. I actually deleted most of those contacts from my phone.  That’s some final shit right there when you hit “delete.”

Being with a man can’t make me feel better anymore. Nothing can make me feel better except for me getting my head right. No movie or TV show or series of amazing books can make me better. No amount of alone time can do it either.

I am going to get through this (alone) just like I’ve gotten through every other thing. Why does this scare me so much, now? And why won’t these fucking zits go away?

Post Script: I almost didn’t post this entry. I felt too…fragile maybe? Vulnerable, definitely. My family reads this blog, some of my young family members. Maybe I’d like to avoid busting up the images in their heads of mostly wholesome Crazy Aunt Beth. People I work with read this blog and that’s even scarier. My entire career, hell the entire advertising agency industry, is based on your ability to project things like uber confidence, control and intelligence. It worried me to think what people would think, reading these things about me. I have to say, I’ve become a freaking expert over the years at mastering the art of the persona. It took effort and it was a full-time job. In some ways, it still is.

So, I decided to not “publicize” this post via social media where those people are likely to see it, click and read it immediately (places where I can’t easily control privacy settings). The reality is I write this blog for me. Part of me writes it in the hopes that I could help another newly diagnosed patient deal with this mess in a better, more informed way. Part of me writes it because I have always wanted to be a “real” writer. No, not even that actual bachelor’s degree I have in actual WRITING makes me feel like I have achieved enough with my writing to call myself a writer.

But mostly, I write this blog for me. I have zero idea why it helps me. I write in a journal every single day of my life and it has always been incredibly helpful to me. I still do it habitually. And it still helps. But knowing that actual people are reading my actual words, on this blog for some strange reason, helps me more. Could it be because I am a terrible narcissist? That might be part of it. It wouldn’t be the first time I’ve been accused of being such.

Another dimension of the phenomena made itself known to me recently, though, in a Facebook message from a friend who I really care about but don’t often see. It touched me so deeply – that someone I never see would not only think of me, but think of me as worthy of giving a very personal and special gift…it hit me like a ton of bricks. In my message reply to him I wrote, “You have no idea how much this means to me… Sometimes I feel like I’m disappearing.”

Or something like that. It hit me hard. I do feel like I’m disappearing. I feel like my edges are getting blurry and the things I believed to be right, true and reliable are just not. Call it growing up, call it a mid-life crisis – call it what you will.

But this blog helps me because it makes me feel visible, in some odd way. So, I am going to hit “post” on this really scary post. Luckily not many people will actually read it! I wish I knew how to get more people (not related to me) to read it. Maybe I should ask one of those digital marketing experts I’m surrounded by every day, about how to get more people to read my blog.