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?

My expensive Internet slippers tried to kill me

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

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

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

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

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

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

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

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

I actually did this just a few short days ago.

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

The slippers of death.

But I digress. Back to the story at hand…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep Passing the Open Windows

Finally a real top down day.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This is a happy post about fear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Darkest Places (So Far)

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

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

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

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

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

And that is exactly what I did.

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

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

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

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

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

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

NOOOOOOoooooooooooooooOOOOOOOoooooooo!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Technical difficulty: LOW (or is it?)

A metaphor for life with MS.

So I thought today was a simple day. I had meetings all morning that were best done on the phone from home (whew). Then I happily noticed that it is indeed Tuesday, and based on my last post, my 3PM appointment on Tuesdays was even more critical than usual for it was with my precious, otherwise known as Cheryl, my therapist.

I woke up feeling dizzy again. I called Nurse Carol and begged for more drugs because more times than not this week, I get the dizzies then I get the sickies and that kind of puts a damper on leaving the house (which implies moving around which appears to be the thing that makes me even dizzier). I took my meds today since I knew there were more meds waiting for me at the pharmacy and I no longer needed to ration the glorious puke-killing pills. Another great reason to leave the house!

I was feeling shaky though so I decided to depend on my new friend Stan, my very sophisticated but simple black cane.

There were crews working outside at two houses across my street and I didn’t relish the idea of getting from my house to my porch to my car (a relatively low difficulty task) but there’s a rather longish stretch of grass to get to my car without a railing to hold on to – and, well. I wasn’t willing to face plant in front of two teams of remodeling men.

I used Stan. I got to my car. I turned on my car and realized I didn’t have my mobile phone (“Beth’s Iphone cannot be found” my car informed me)…Well dammit. I had to do it again – the low difficulty trek from my car TO my front door. My legs are now tired. Then it hit me…my phone was actually upstairs on my second floor. I had to climb the steps.

OK then! I can do this. I climb the steps on shaky legs, holding onto the railing to keep from falling, and grab my stupid phone. By now I’m running a little late for my very important date. I realize when I get to the front door (again) that Stan is looking at me from the passenger seat of my car. Ok then (again) it’s not that far! I can do this.

It was just about to the curve of stones that signify that I’m almost close enough to hold on to my actual car on one side and my actual house on the other side, when my legs kind of lost their will to be legs and I started to go down. Now, if you are a human who falls often (whether or not you are luckily enough to have MS) you know that there are good ways to fall and bad ways to fall. My friend Sandy throws her purse to the ground with great vigor as she’s going down. We’re not quite sure why (perchance to have both hands available for maximum impact support) but I’ve witnessed this with my own two eyes and it is nothing if not an impressive strategy. I have nothing in my hands but my keys and my iPhone. I panicked.

In no particular order the following thoughts raced through my broken brain;

  • omg I’m going to fall in front of not one but TWO teams of construction workers. IN MY FRONT YARD.
  • omg one of them might have to carry me to my porch like that one time that moving company guy told me not to worry when he attempted to pick me up – “I was gonna move couches all day, lady, I think I can handle you.” Um. Right. So not a compliment, dude but thanks anyway.
  • OMG I AM GOING TO END UP BACK IN THE HOSPITAL THIS CANNOT HAPPEN.
  • omg I am going to miss my appointment with my precious and this also CANNOT HAPPEN.

My lizard brain took over. My feet started some bizarre combination of random jump moves that may have resembled someone having a fit and trying to tap dance simultaneously. At the very same time, my arms begin to windmill because somehow, my obviously broken brain thinks this will help save me.

My arms and my legs are now moving in many directions all at the same time trying to keep my face from hitting that little strip of craggy concrete that is my driveway. From my mouth is coming a sound something akin to a squeak, or moan, or some animal noise that I am trying not to make too loudly so as not to attract the attention of the teams of construction workers.

I didn’t fall.

It was a goddamned straight up MS miracle. But I didn’t succeed in not attracting the attention of the construction workers at both houses who commenced to applaud. Had this been an actual Olympic sport, I’d probably  have seen them hold up cards giving me low scores for technical difficulty but all 10’s across the board for artistic interpretation of falling on your ass in your own front yard.

I get to my car, my heart is racing and my hands are shaking. Stan looks at me from the passenger seat and practically laughs. I text Cheryl to let her know I am on my way but I may be late because I had yet to pick up my drugs at the pharmacy and I may or may not have legs that will allow me to both get to the pharmacy AND TO  Cheryl’s office. I suggest we might have our session by phone.

Not a second goes by when I get a response: “Oh my…and what’s worse (not really) I’m in Paris, mon amis.”

Um. Yeah. She definitely told me about this. She planned this trip as a re-do of her birthday celebration that she was not well enough to enjoy when it had been her actual birthday. I’ve told you before that Cheryl, also by coincidence, has MS. I cannot tell you which milestone birthday she was celebrating because she’d probably fly home right now and kill me, but rest assured we had discussed this schedule change in our last session (you know the one? I cried for an hour straight).

I knew damn well about her big trip to Paris. We talked about my own trip to Paris not that many years ago. I completely forgot all of those details until I got her text.

I took my life in my hands for nothing. I walked like a hard core afternoon drunk into the pharmacy to get my drugs for the dizzies and the sickies. I just couldn’t wait for those drugs. Those drugs are currently vital to my days and nights. Then I had to conquer my fear and get myself back in my damn house taking the opposite path as pictured above without once again providing several construction crews with yet even more comedic material.

I take so much for granted. I just think…of course I can do that! But when I can’t? I really can’t. There is exactly zero gray area. The problem is, it’s also impossible to know when my legs are suddenly going to turn into useless, twitching lumps off uselessness. It kind of just happens. And here’s the kicker! Stan doesn’t really help. If he did, I would take him with me everywhere I go! But I did use him when I got back home again and I was concentrating so hard on how to walk with Stan in my hand, that I almost straight up tripped up my front steps. Thank goodness for that very sturdy (and quite pricey) wrought iron railing I had put in a few years ago.

I’m really ready for my next infusion, thankyouverymuch. Bethy Bright could use a break that doesn’t involve one of her legs or facial bones. And there. I probably did it again. I cursed myself by complaining, acting as if things just couldn’t get any worse. Believe me. I know they can and in a blink of an eye. I see your posts and comments about sudden symptoms that have you not able to walk at all! It can always, always get worse.

But here’s to hoping that I will still have it in me to find the humor in those situations when it does get worse. Cause I still have moves. As it turns out.

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.

Tales of an elderly shut-in, episode 1

Funny things happen when you spend a lot of time alone. Your brain goes places long ago left behind. You start thinking about every little thing.

I find it odd, specifically because I have always spent a lot of time alone and I have also always enjoyed the crap out of that fact. Maybe it's because I get so much of people in my work? By the time I get home from all of the managing, talking, maneuvering, game-of-thrones-playing and otherwise interacting with my team, my clients and my colleagues I am fairly well talked out. I make a nightly call to my mom on my way home from work so that once I finally walk in the door, I don't need to talk to another single human until the next day. It's kind of glorious.

Even though I've been home for over a week dealing with this vertigo mess, I've had more visitors than I usually have and a lot more social visits – even though most of them occurred in my bedroom with visitors gazing down upon me lying flat on my back, I still got to see people. It was nice. But now that I'm facing down another Monday and likely a week where I will be working from home, it's starting to motivate strange thoughts in my brain. Like…why am I so happy alone?

Am I trying to protect myself? I mean, it's possible. I've not chosen very wisely in my long years of relationships with men. Probably because most of them weren't men so much as boys. My husband and I were as opposite as opposites get. He was fun-loving and happy, the life of every party – I was intense and responsible. Once he was gone, I took it on myself to make up for his absence by being as "fun" as I could be (you can interpret that as you will, but I think you know what I mean). I had a particular weakness for bartenders, ideally under 25.

I had a few bigger relationships, sure I did. None of them were what I would now call very real. I was looking to fill a void, change my own perception of myself, or even just experimenting to learn more about myself. Filling time! Having mindless fun.

The last big fling was such an unmitigated disaster (I was around 43? I think? It's hard to remember) that I haven't gone back to the plate since. I have no idea why I'm using sports metaphors. I literally hate sports. I also literally hate being in relationships, based on my reflections of late.

A friend of mine posted on Facebook tonight about how long she'd been single and how it might be time to head out there again. This is a really good friend, which might seem odd because we've never actually met in person but to say that she has become one of my best friends in such a short time would not be an understatement. She is my MS guru. My sounding board. She makes me laugh. She understands when I cry. That post of hers today made me think how long it's been since I've been in anything even resembling a relationship and it's a damn long time.

Like 8 years???

The funny thing is, even now that I have been diagnosed with a life-long chronic illness that makes living alone a challenge at times, I sincerely believe that the only thing that could make this whole experience worse would be to have to go through it in front of another human.

When I'm so low that I can only crawl up the stairs; When I'm so sad I just lay on the couch and sob while four animals lick my face trying to get my tears before they dry up; When I'm so tired I can only roll over and cling to my body pillow and close my eyes for a few more hours; there is nobody to pressure me. Nobody to urge me to try harder. Nobody who cares if my bedhead is so bad that it's officially become performance art.

When I need help, I've found ways to get it. Friends and family get the nod for being awesome just because they love me and believe me when I tell you, I've needed them. When things happen that aren't practical to bother friends and family for, I do what every single woman of a certain age must do. I HIRE SOMEONE! If it can be delivered, I order it. If it can be hired out, I do it. My current staff includes the following:

  • Cleaning lady
  • Yard guy
  • Window and gutter cleaning lady
  • Tree trimmer guy
  • Bug spraying guy
  • The usuals like plumbers, electricians and other handy people
  • Grocery stores where I can order online that put my groceries in my car for me
  • The people who make me feel better on the outside (hair girl, nail girl, massage guy – I have the general maintenance covered).
  • Various Postmates drivers (who may actually count as long-term relationships now that I think about it).

None of this is cheap, of course, but it makes life so much easier especially when your body seems intent on making life as hard as it can possibly be. Then there are my people at work who I can rely on for just about anything be it food for lunch, delivery of medicine, meetings in my living room while I can't stand up so good, general comradery – it's almost more productive than actually being in the office.

But I've been in this house for more than a week now and my mind wanders to strange places where I find myself wondering…why is it that I'm so happy alone?

I prefer my singular strangeness, quirks, bizarre habits and rituals when they are mine alone. Having so many people in and out all week has proven this to me. It makes me squirmy to explain to people all of the strange things/routines/rituals I have in my house day-to-day. Why everything looks super spiffy on the outside but the drawers are a disorganized mess. Why I put the cat bowls where I put them (in the same positions every single day). How I thoroughly scoop the litter boxes as if I'm being judged by a highly critical board of experts. How I make my bed the way I make it – and make it again before I get into it, if for some off chance I was too tired to do it that morning. How I fluff the pillows on my couch before I go to bed each night. How I only read in bed and how I've seen every episode of Law & Order SVU at least 500 times and can likely recite each one of them for you.

These things don't make me sad. They make me intensely happy. I feel the most me that I ever feel when I am home alone. Sometimes I think it's because of what I've done the minute I've gotten into any kind of relationship throughout my entire life. That would be immediately start trying to change myself into who some guy thought I should be. Or more accurately what I thought some guy wanted me to be. It has never not happened. Wait. That's a lie. It has happened at least once. Maybe twice. But each time there were other reasons so concrete why that dalliance could never go anywhere at all, it was never really that much of threat to my singularity. I knew I'd be back before long. And I'd have the same overwhelmingly familiar feeling when it was over.

Relief.

I know what you're thinking. You're thinking, "Oh Beth, stop, you just haven't met the right person yet! You're putting up walls to keep others out! You aren't really happy you just THINK you are and that's so sad!" But those of you that know me well will definitely understand. You get how being myself, and only myself, is so important to me, so hard-won a battle, that I've just not met the man yet who would be worth the risk of even losing a tiny bit of me in the making of a couple.

I'm not sure that man exists and to be frank, I'm almost glad of it. What the heck would I be doing with him now? Making him carry litter up the stairs? Take out my trash? Fix things that are broken? Make me happy when I feel sad?

Nobody can make me happy when I feel sad. Only I can do that. I learned that a long time ago. I found peace when I stopped looking outside of myself for that thing that would make me whole. I found peace in my solitude.

I guess that's a good thing, too. In my convalescence, I have a new member of my staff this week who I've already fallen in love with. She's my new cat helper, Kathy. I found her through another angel of a friend who knows what it's like to be a crazy cat lady with four cats and temporarily incapacitated.

My new cat sitter comes twice a day to feed and scoop. In the mornings, it's the most amazing thing! She gets here amazingly early (before the kitties have started their morning ritual of pouncing on my sleeping form to wake me for feeding time). I sleep right through it! I've gotten the best sleep of my life these past few days. While I am still dizzy as hell, I am starting to feel a little better. I can see better. I can read! I can sit upright for a few hours and not feel like I'm going to perish. It can't be long before I can leave the house, right? Things are looking up!

Tonight, when she came by for dinner hour, I was gushing all over her about how grateful I am for her help. It eases my mind more than you can imagine to know that I don't have to bend over, use steps and generally take my life in my hands in order to keep up with my rather um, extreme, kitty care standards, I told her. She is a wonderful human. She scoops like it was an Olympic sport! After I got done gushing, she said how happy she was that she hadn't woken me up this morning when she got in to do the morning shift.

"I was trying to be super quiet," she said. "I know how much you need your rest and I would have hated to wake you. I had some trouble with my key this morning and I was worried that it would disturb you but then I got the door open and headed up the stairs and I could hear you snoring, so I knew you were fast asleep! I was so relieved!"

I COULD HEAR YOU SNORING?!?!?!?

So there you have it. I snore. I had no idea. I thought maybe I snored occasionally, and when I did it would be tiny little snorts sort of like an adorable baby piglet would make and they certainly wouldn't be heard all the way from the steps. OH. MY. GOD.

I've added to the list of reasons why I'm happy to wallow in my solitude. My joyful, peaceful, calming solitude. My personal quiet sanctuary where I can be fully myself and nobody else. Maybe when I stumble across the man who can embrace all of that (AND the fact that I snore) I'll be willing to open the door a little. Or maybe not. I mean, unless he happens to stumble into my living room, it's highly unlikely that Mr. Right for Beth is going to make an appearance any time soon.

Unless he's the UPS guy. Who also loves cats. And chicks who snore.