It was a weird (but amazing) day

I’ve been feeling crappy. I cannot lie. I’m super run down. I would sleep 24 hours a day if that were remotely practical. My walking has been meh, even with the use of my wonder drug. Apparently, even when taking an amazing new drug, you can still have bad walking days. Color me informed.

The season is changing right in front of my eyes and I’m torn about how I feel about this reality, hence my last post about my complicated relationship with the sun.

It makes me think of all of the seemingly easy, basic tasks that come with the change from Winter to Spring. Putting some things away, taking out others. Cleaning off the front porch and maybe planting some flowers. Fighting with the storm windows so I can get the screens to fall down into place. Putting the hose back on the rack outside for watering purposes. Changing the dreaded closet…shoes…coats. Changing out the curtains and slip covers, the blankets and quilts to put away.

All of the stuff. So very much stuff.

All of that stuff used to make me happy, or at least I thought it did. I had fun with clothes. I looked forward to getting dressed each day. I knew it was ludicrous to have seventeen different winter coats in every color of the rainbow but I thought it made getting dressed each day like an art project. I liked to change my color scheme in the house from winter to spring. I have slip covers for certain furniture for different seasons. I used to even change out my area rugs (I don’t do that anymore).

Lately, as I’ve gotten a much needed jolt into the real world by my life circumstances, my relationship to all of that stuff has changed right before my very eyes. I don’t know what hole I was trying to fill in myself, or what deep seated fears of poverty I was fighting. I don’t know when or how money somewhere along the line came to mean security and safety to me, above all other things.

I’m full of shit. I do no know when. It was after Chuck died. But it started before that. It definitely intensified afterwards, but it was in me all along. Hell, it was in both of us. Being married to Chuck was fun, not in small part, because we shared an obsession with cool stuff.

Chuck’s family had money. He liked having money. He lived like he had money even when he (and we) didn’t. When he didn’t like his job, he quit. I was aghast at this reality. I would have never considered quitting a job just because that job sucked. Jobs mostly sucked, I knew, from a lifetime of having them in order to have any money at all. For Chuck, though, not making money wasn’t the biggest fear in his life, like it was for me.

I made sure we were covered financially, no matter what or no matter how much I hated whatever job I was in at the moment, because somewhere in a life where I wasn’t overwhelmed with stuff, I became obsessed with having as much stuff as I could. It made me feel safe. There is probably an entire segment of years in my therapy with Cheryl where we will uncover the reason why I have always been made to feel secure and happy surrounded by stuff. But it’s just a simple fact. We didn’t take money from Chuck’s parents if it could be avoided. We took care of ourselves but we still spent way more money than he or I ever had.

I grew up having everything I needed but we didn’t really have money like Chuck’s family had. I was well cared for. I had things that most kids want. We had Christmas presents and clothes to wear and three new pairs of tennis shoes each spring (red, blue and white for dress) from Sears. My sister and I had matching outfits on holidays and most of the dolls and Barbie’s we wanted. But we were not rich. In fact, I’d say we were sometimes downright tight on money because my dad worked a blue collar job as part of a union. When he worked, he made lots of money, but when he didn’t work (and he didn’t work a lot) we had to scrimp.

I never liked the scrimping part. Maybe I was flawed from birth. Or maybe the feast or famine nature of my growing up years created in me a definite longing for more feast than a tolerance for famine. I wanted much more feast. When my parents couldn’t or wouldn’t give me money for the stuff I wanted, I had jobs for making money that remedied that situation. Well, not entirely, but I could fake it just as well as the next kid.

I went to high school with some rich kids, probably the first really “rich” people I’d ever met. These kids wore clothes with logos on them, brand name jeans and fancy leather shoes from fancy stores in Shadyside or Squirrel Hill. Some of them got cars on their 16th birthdays (some of them got really nice cars). I definitely learned to like things well out of my price range. I always wanted nice things. More things.

I am not proud of any of this but it’s just the truth.

Now, I find all of this stuff to be entirely stupid on one hand, and embarrassingly wasteful on the other hand. My job, and any money I make from it, has become a pretty functional thing to me. It means I can afford my medicine. I can get the care I need. When I need help with something I can usually afford to pay for said help. I take some really expensive drugs. I feel overwhelmed with gratitude that I can even consider doing that. Even when the drugs don’t work, or make me crazy, I’m still grateful.

I don’t need all of this stuff. I don’t really even want (most) of it. I realize, instantly, how privileged I am for being able to make such a statement. I feel like the stuff is in my way, sucking up my energy, wearing me out with its constant need to be moved around, managed or dealt with in some way.

I’ve been trying to pay it forward, you could say. It’s really rather practical. I’ve spent my life acquiring more shit than any human needs, now I want to give it away when somebody might like to have it, might need it or just because I think they’d look cute in something I used to love wearing but really don’t so much anymore.

I’m trying to donate things where I can. I definitely donate more money now than I ever have but if I know someone needs something that I have, but do not need, I want to pass it along. I don’t want to sell it.

This is complicated because it can go wrong really quickly. I don’t want to be seen as some benevolent Mother Theresa wannabe because I am clearly not even close. The vain, selfish, insecure and materialistic parts of me got me to this place. It’s nothing to be proud of. I want to be proud of my success without having to be obsessed with all of the stuff. So I’m working on that.

I never want to make someone feel like I’m giving them something because they are needy or somehow pathetic to me – that is never even close to the truth. It just makes me happy to be useful. Maybe it makes me feel less guilty for being such a mess of a person for so much of my life. I’m sure in many ways, it’s the most selfish act of all.

That won’t make me stop doing it. I like to find a way to help someone, give someone a happy surprise, or a much-needed break.

I was able to do that today for a stranger, and I honestly believe it’s proof that I get more out of these acts than the receivers ever do. Here are the basic facts of what happened to me today:

  • I saw a post on Facebook from someone who needed something for a really important reason and was more than willing to pay for it.
  • I had said thing in my house and never, ever use it. Like never. It was being wasted in my possession.
  • I messaged this person and offered her the thing she needed for free.
  • In the course of our messaging back and forth, I explain that I’m trying to get rid of stuff because of my recent diagnosis of MS and the fact that I have way more shit than any human ever needs.

This is where shit gets weird. She tells me she was diagnosed 13 years ago herself. Wait. WHAT?

She and I have basic human things in common like politics, values, ideas about how life should be. I tell her it would make me very happy to drop off the item to her house because I knew it would be harder for her to get out to pick it up herself (she has kids) and I was kind of looking for an excuse to get out of my house. So that is exactly what I did.

Talking to someone who has MS is like meeting a complete stranger who knows you better than your very best friend or even your mother.

It’s the most difficult thing to describe but it’s a basic knowing of what this is like that is literally impossible to communicate to another human who doesn’t have the disease. Hell, even The Great Scott and his team very clearly have trouble understanding what it’s like to have multiple sclerosis. When you try to describe it to someone who doesn’t have the disease you wind up feeling stupid because, well…everybody gets tired. Everyone has problems. Everyone has aches and pains. All of us are getting older and all of our lives are constantly getting harder. You just can’t describe it well enough to help anyone who doesn’t have a chronic disease even begin to fully understand what it’s like.

But, meet a complete stranger who has MS and it’s like…BOOM.

They just get it. They say things you instantly get and could have said yourself, things like, “Yeah, Provigil did nothing for the physical fatigue it just makes you hyper focused. It was invented for fighter pilots who had to stay alert for extra long missions. So you end up laying in bed physically finished, like you cannot move, but your brain is like POW POW POW.”

OH MY GOD YES! YOU GET ME! THIS IS WHAT’S HAPPENING TO ME HOLY SHIT YOU GET IT! OMG I AM SO RELIEVED!

This incredibly smart, incredibly strong complete stranger manages having this disease whilst taking care of three children on her own. She is basically a super hero to me. We chatted for a bit at her dining room table while her daughter quizzed us on state capitals (neither of us got very many right) and then chemical symbols (my new friend got ALL of those right since she worked in immunology research and has a degree – or many – in biology). I was blown away by this woman. And by this entire experience.

How did this even happen? I was doing something really easy for me to do. I was giving away something I didn’t need. It was selfish, really. But I got out of it so much more than inventory reduction.

I found a new friend with whom I could discuss my questions about the new drug and how it’s awfully like the old drug that she is currently on. She gave me a name for the obsessive practice I have of not running out of my meds (she called it creating “a medication buffer” and holy crap! Yes!) She talked of resources I wasn’t aware of. It was really easy to talk to this woman. Like we’ve known each other our entire lives.

But honestly? I was nice to have a real conversation with a real human that didn’t involve me typing. I guess I don’t realize how rare that is outside of my very close circle of friends, my family and people I work with. It was just beyond nice.

So while I’m on the record for not really believing in any true benevolent god-person who is pulling the strings for all of us from some far off place where people fly around in white robes with fluffy wings…I have to believe the universe is somehow working. Things like this just happen! There is all the proof you need.

 

Relationship status: It’s Complicated

Me, sitting on my back deck of the vacation house in St. John last year.

Of course, I’m talking about my relationship with the Sun. What the hell were you thinking?

Anyway. My complicated relationship with the Sun didn’t just begin with my MS diagnosis. It started a long time before that. The Sun makes for pretty days, it puts people in good moods, they smile more and generally become more pleasant versions of themselves.

Me? I find the Sun flat out oppressive. Maybe that should have given me my first clue that something was not-quite-right up in my Central Nervous System. But sunny days make me feel pressure.

I feel pressure to live up to their promise. I feel pressure to go outside. I don’t really like outside all that much. I know! You don’t have to tell me how weird that is or how nature is glorious or how you feel deep in your soul satisfaction when you commune with the earth…I get it. I really do. I just don’t feel the same way. Maybe because I’m never comfortable in nature. I’m extra wobbly on or in water. Hiking involves walking on uneven terrain and I don’t do so well on a perfectly smooth hardwood floor.

I hate to be hot. I mean what I say. I don’t just dislike it. I hate it.

This has made many people think I’m not only weird but also annoying for being vocal about my unpopular opinions about the weather, particularly sunny, warm and humid days. You know who you are! I may annoy you, I get that. You hate to be cold. Gray days depress you (I get that too…sort of, since I’ve recently discovered I also have an intolerance to extreme cold! I mean, thanks MS, you’re awfully thorough). You can’t imagine why a person of sound mind could possibly loath the delicious slightly damp hot air that pervades so many months of my life in Pittsburgh, PA, thanks global warming.

Let me explain how it feels to me when it’s hot, and even more, when it’s hot AND humid.

I feel like I’m slogging through wet cement. Lifting my limbs and making them move as limbs should takes herculean effort. I sweat more than the average bird and I feel like I am struggling to breathe. My hands and feet swell to abnormal proportions. My face gets splotchy and red. I want to join in your summery delightful fun, but my body is telling me if we try to do that we will surely perish. When it’s hot and humid my body goes into standby mode trying to conserve as much of its ability to stay upright as possible. You are having a ball! I’m trying to hold my shit together and not lay on the floor and just die.

OK. I tend to be dramatic but only a little bit.

It’s not just the heat that makes my relationship with the Sun complicated. It’s the bright, hopeful, sunshiny aura it brings along with it. It’s the promise of activity and fun! It’s the call to get out and be social, to suck up that delicious sunshiny life elixir, and generally behave like the best possible version of YOU that you can possibly be. You even look cuter! You wear fun sandals. You have a skip in your step.

You know what happens when I attempt to have a skip in my step? Well, I think you do. I skip myself right into being face down on the cement possibly bleeding from my head. I don’t feel cute on sunshiny days. I feel bloated and fat from the constant swelling in my extremities. I want to do things that make me happy – things like reading, sleeping, writing or even, yes, even working. But it’s nice out! I’M SUPPOSED TO BE OUTSIDE BEING HAPPY! I jump on Facebook and see no fewer than 99 different friends insisting I get outside and go for a walk, it’s so goddamn nice out!

Holy freaking pressure.

I had a super long, super active day yesterday at work and it was a lovely, if quite chilly, sunny day in Pittsburgh.

It was OK though. It was a really, really, good day yesterday! I had a first look at our new, larger office space a couple of blocks away from my current office. I managed to not only walk there, but I also managed to walk around the construction site, generally keeping all my limbs mostly under my control. If anyone noticed me walking funny on the way back to the old space, nobody said anything (yes, this eventful day involved visitors from the southern Home Office and from the giant French mothership so I had to perform these feats for an audience). We had to walk around our existing space and determine what would move and what would stay. By the end of the day, I was pretty much out of gas. But I had more to come.

I had told my favorite niece that I would visit with her before going home from work and help her decide what to pack for her upcoming European adventure. We were ordering Postmates take-out from one of our favorite local restaurants. There would be guacamole! There was talk of ice cream. And clothes! You guys know how I love clothes, especially when I’m choosing styling options for one of the most adorable young women I’ve ever seen.

I was kind of excited about the whole thing. I also knew it would be pushing myself too far. I’m sure my niece was fully expecting me to cancel. Let’s face it. If I make any plan with you to do something social and fun, there’s a 90% chance I’m going to bag out at the last minute because I’m too tired. That’s just the truth. Let alone on an evening after I’ve had a full day traipsing around downtown Pittsburgh trying to look like a normal. “Know your limits,” said someone who knows me really, really well.

But it was a sunny, happy day. It was an evening full of my favorite things and one of my very most favorite people. I was committed to making it happen if I had to crawl down the (extra very long) hallway to my niece’s apartment. I’m so glad I did! It was super fun. It might have been hard and it probably was too much after the day I had but I always put work first. I always say, “I can’t” to the fun stuff. I wanted to do the fun thing too. So, I did. I even got to take home some beautiful flowers and some left over guac.

I finally got home by 9:30PM. I barely had the energy to use a damn makeup wipe to take off the face I made myself put on in honor of my guests earlier that day. It was a struggle to get into my pajamas. I removed each piece of jewelry feeling like I was lifting weights. Feeding the cats and scooping the litter on two levels of my home took every ounce of energy I didn’t have left. I even did my favorite thing…I crawled up the steps to the second floor to get myself into bed.

And today, like a reliable curse, the sun shone like the giant ball of hope and optimism in a bright blue sky full of promise.

I had an interview scheduled at work. I had a day full of meetings. I tried to get my body to work like a body should, but I just couldn’t do it. I had to stay home. I had to sleep late (meaning I’d work late tonight, too, but that’s the way it goes). I didn’t have it in me to partake in the promise of this sunshiny, warm day full of happiness and promise. I had to look it in the eye and choose to go back to sleep. I rescheduled that interview. I did the meetings in my pajamas on the phone.

So, yeah. I’m working on my relationship with the sun.

I’m working on not feeling bad about myself for not loving it. I’m working on being OK with people thinking I’m no fun, sour or just plain lazy. I’m also working on figuring out how not to be sad about making the decision not to go on our yearly trip to St. John for spring break with my sister and the kids.

We’ve gone back to the same magnificent house for several years running. The picture above is from last year…it really is heaven on earth. As you would expect, St. John is chock full of sunny, warm days. It’s overwhelmingly beautiful.

I had to be honest with myself, though. It’s not as fun for me anymore. I did go last year and by all measures, I did pretty well. Considering. I needed help to get into the ocean (and then out again) but the kids were awesome about helping me. They all helped me carry things and didn’t ask me to lug heavy stuff on our daily trips to the various beaches on the island.

The house is located high up on a mountaintop and thus, has quite a few steps. I got super worn out from all the step climbing, the heat, the walking on sand and in water, the daily showering! Holy crap, I hadn’t been that consistently clean in a very long time. But a day at the beach must end in a shower lest you turn your bed into a sandbar.

It wasn’t like I didn’t have fun in St. John last year. I really had a ball enjoying the natural beauty I was surrounded by. But when I thought about doing it again this year, I had to admit to myself that my heart just wasn’t in it. I wasn’t yearning for ten days on the beaches of St. John. I don’t even know how to justify that sentence in my own head but it’s true.

I decided not to go this year. I felt good about that decision at the time but now that the trip is looming, naturally, I also feel a bit sad. I won’t see the sun set over Trunk Bay. I won’t eat peanut butter sandwiches packed for lunch or have coffee overlooking the beautiful Caribbean Sea or drink champagne with my sister on the beach at sunset, or read a good book on my back deck like I was doing in the picture above.

I will be here, at home, where the weather is changing back to spring with summertime looming in the distance like a threat. I will be trying to figure out how to not hate it, how to live in it, and how to not sleep my life away, how not to hate every minute when I eventually am forced to step outside. I will be trying to figure out what sort of vacation I’d find more relaxing and less stressful now that I have a different kind of life.

I will figure it out. I know I will. I will remind myself over and over again that I am still at the beginning of this MS journey. I’m still in the thick of the mess, the confusion and the adjustment. My body isn’t my friend right now but I have to believe it won’t always be this way. I will figure out how to be slow, quiet and cool – and not sad about it. I will stop beating myself up for feeling oppressed by the sun.

Want to know something really funny? I drive a convertible. Yes. The woman who hides from the sun has driven a convertible for the last ten years or so. There is nothing like driving with the top down on a sunny day. I call it “driking” when I drive through tree-lined roads near my house, looking at the leaves, enjoying the blue sky and the free feeling you get driving with the top down…

…with the air conditioning running full blast.

What a dumb day

Today started out pretty nice, really. I woke up around noon after a lovely sleep. I had pancakes with my niece at my favorite breakfast place (who cares if it was lunchtime for the rest of the world). 

I had a few chores I wanted to tackle today and I was feeling like I could probably make it happen. But what should have been an easy jaunt to the laundromat turned into the most stupid day ever. 

See, it’s shedding season. The cats are dropping fur in clumps all over my house but they are especially fond of leaving their fur all over my bed. I mean, we all spend a lot of time there. It was pretty gross this morning when I dragged myself out of bed.

I resolved to get my big bedding – comforters, quilts that kind of thing, to the laundromat because they’re just too big to do properly at home. And it would take very many steps to get it done at home – physical steps from the second floor to the basement and up and down and up and down. The laundromat is so much easier. They have giant machines and even better than that, there’s an attendant who will do your laundry for you. You drop it off and pick it up when it’s done. Easy peasy!

I mustered up my energy and dragged three giant laundry bags from my second floor to the first floor then out the door to my car. I figured since I was going I should do all of the dirty comforters and quilts. I have a few. It’s kind of a sickness in and of itself, my obsession with my bedding. I made it to the car and felt pretty victorious. 


That is my laundry in the vestibule of the local laundromat. I dragged it in there all by myself. I dialed the number I usually dial for the attendant – but nobody answered. There was a sign that said “attendant will be back shortly.” There were some moderately shady people hanging around the laundromat and I wasn’t sure it was wise to leave my precious bedding unattended. So I thought, no big deal! I’ll just wait. 

One of the guys in the place walked to the back of the laundromat where I was waiting and told me that the attendant would be back. “He usually pops in every hour or so. He should be back soon.” So I waited. I called the number a few (15) more times and still got no answer. And I waited some more. 

“Sometimes Clark is over at the St. Vincent de Paul store hanging out with the girls there. You could walk over and check.” Ok. That’s not so far. I can do that. I’ve been there for like half an hour now and I’m starting to feel stupid. I head toward the front door and I notice that it is now pouring down rain. I turn around and walk back in to the back of the laundromat and plop back down on the little chair by the unattended attendant’s desk. I wait some more. 

I’m chatting with the other patrons by now. Making friends. Trying to gauge whether or not they seem like the kinda folk who would steal a person’s bedding. It’s really hard to tell! I walk back to the front of the store, notice the rain has stopped, then head out the front door down the street to the St. Vincent de Paul store about a block down Main Street. 

“Hey is Clark here? I’m looking for the laundromat guy,” I say, to the girl with the green hair who works in the charity store. 

“I think he’s gone. He left around four,” she says to me. It’s now 4:45pm. And I’ve been hanging around the laundromat like a creeper for almost an hour completely torn about my next move. Walking back and forth. CallIng that stupid telephone number over and over again. Should I stay or should I go now? The Clash had no idea how deep those lyrics were. 

I begin to ponder my situation. This whole thing is happening because I don’t have it in me physically to drag those three giant bags back to my car and then back into my house all without getting them cleaned, goddamit. I had a goal! I wanted this goal accomplished. But my body was about kaput. I knew if I dragged those three bags back to the car I’d never come back. 

This is life with multiple sclerosis. 

You plan elaborate schemes for accomplishing ordinary tasks. You obsess over these tasks and how doing them shouldn’t be so hard. For Christ’s sake, I looked like the healthiest person in that place. I definitely had the most teeth. I should not be having an existential crisis over my bedding. 

I wait for twenty more minutes before deciding to leave a goddamn note and walk out the door (without my dirty bedding). Screw it. If someone wants my cat hair infested comforters that badly they can have them. I just didn’t care anymore. 

I took myself to get ice cream out of sheer frustration. I’d wasted a whole lot of this day trying to get one goddamn thing accomplished. Just one! And I was really, really tired from the effort. And I still didn’t have clean bedding. I think I deserved that ice cream. 

People will say (I can hear them saying it, as I type), why don’t you ask for help? Wait until someone is available to carry the heavy shit. Call someone! Ask a friend. Or a relative. Or anyone at all really! Don’t waste your energy doing stupid things like carrying laundry all around town and doing a walk about looking for Clark. 

Sometimes you just want to do the silly, stupid things yourself. Sometimes asking for help just makes you feel like someone helpless who can’t even do the littlest, most basic life tasks.  Believe it or not, sometimes having to ask for help to do little, stupid things just feels dumb so you do them yourself. And you end up feeling trapped in the laundromat because you don’t know how to muster the energy to leave and come back again. 

About an hour after I finally got home my phone rang. It was Rick from the laundromat. He had my laundry and I’d probably be able to pick it up a couple of hours or so. He’d give me a call. He starts work at 5:30pm on Saturdays. “You could have just left your stuff it would have been fine,” he tells me. 

He called me back when it was time for pick up. I saved that number in my phone. I will never be held hostage by my bedding ever again. I’ll just call Rick. Get the info, then leave and do something slightly more pleasant than feeling stranded at the laundromat. 

It occurred to me that I could have done the laundry myself in all of that time I sat there waiting. It would have been done. Of course I didn’t have this brilliant thought until after I got home with those giant bags of clean laundry and dragged them back to the second floor so I could put clean bedding back on the bed. Finally. 


This is the best part of world’s dumbest story: Look who’s all snuggled up on top of me and my newly laundered comforter. If you could see his kitty facial expression you’d notice he’s looking rather smug. 

Today was a dumb day.  But I did get pancakes (and ice cream).  I have clean bedding. I have Rick’s digits saved in my phone for all eternity (so this stupidity does not ever need to be repeated). And I’m back in the happiest place on earth. 

And I did it myself. Take that, MS. Take that. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Quick funny story

So you may or may not know that I’ve been in specialty pharmacy pre-authorization hell for the last few days trying to get my Ampyra refilled longer term. It’s not gone well. I’m down to five days worth of pills. Still no approval. 

I have a business trip next week for which it would be most helpful to be able to walk. It’s longer than 5 days away. I’m kind of in a bind. 

One of my smart friends suggested I reach out to the Ampyra people directly to see if they had any way of sending me samples (or something) while I try to wade through insurance hell. So after being on hold today with CVS/Caremark (aka the seventh pit of hell) for exactly 58 minutes, I decided it was worth a shot. 

Guess what? They can’t help me with samples.  I couldn’t be that lucky. But the very helpful woman from Ampyra wanted to know why I wasn’t in their system. This confused me. I explained I wasn’t aware that I was supposed to be in their “system.”

She then very clearly and helpfully explained to me that when a new patient starts Ampyra the doctor’s office is supposed to send a form to the company to enroll me in their program. 

The program gives new patients a free 60 day supply (which makes a ton of sense since this drug doesn’t work for everyone). While you’re enjoying your free 60 day trial, the drug company handles setting you up with a long term script with your specialty pharmacy. In other words, they do the work. You try the drug. If it works, at the end of 60 days you’re all set with a year long refill system on their patient assistance program. 

“Oh!” I say. “Well that probably explains it then. I probably make too much money to qualify for any patient assistance programs. I pay $250 out of pocket for the 30 day supply.”

Ampyra Rep says,”Do you have private insurance through your employer?”

“Yes I do, which is why I’m currently stuck in CVS/Caremark pre-authorization hell,” I say. 

“It doesn’t matter how much you make, honey. You qualify. We need your doctor’s office to fill out a form they can get on our web site. Once that’s done, we do the work. Your co-pay will be $40 for a 30 day supply. For as long as you take the drug.”

“I’m sorry, what?” I say. 

“You qualify for patient assistance. Get them to fill out the form and get it to us. We’ll take it from there,” she says. She is super duper nice and very helpful. 

“Wait. So you’re telling me I could have had 60 days for free? So $500 (to me) worth of medication and then YOU would have handled this whole mess for me? For the refill for the drug that I still DON’T HAVE?!” I’m trying at this point to modulate the tone of my voice.  “Um, can I just get in that program now?”

“I’m so sorry. You’re not a new patient anymore. But you still qualify for the assistance program. Just have your doctor’s office send in the form today. It will take ten minutes tops, I promise,” the helpful Ampyra representative says to me. 

So who do I have to call? Freaking Nurse Bane of My Existence Carol. She’s far too busy to help me. She will let me know when she has time to send in the form. It’s the end of her day after all. 

Let me recap. 

I could have had 60 days free (thus saving myself $500 dollars out of pocket) if Nurse Carol had done this the right way. I would have had no lapse in medication because I’d have pills to take for 60 days – while the company works out the details for the long term with the insurance and specialty pharmacy. 

“Honey, that’s why we have this program. Your doctor should have told you about this. We know how hard it is to get your authorization approved so we give you 60 days free.”

And…scene. 

In the category of “always learning the hard way…”

I offer this quick update.

As evidenced by my schlumping, stomping, dragging, bobbing and weaving all over downtown Pittsburgh today, I can confirm that it is not actually a good idea to take one dose of Ampyra on one day, and then no Ampyra at all a second day and still hope that it works. BAD IDEA. Color me informed.

Oh. I also didn’t take my modafinil yesterday in order to give my obsessive broken brain a little break and subsequently slept until 3:30PM. It’s also two days before infusion and I generally feel like shit.

So, experiment over.

I go through phases where I openly resent needing expensive daily meds in order to operate at levels anywhere close to what used to be considered normal for me. I talk myself into the fallacy that if I only tried harder, I too, could be one of those energetic, strong, MS-Cross-fit ladies who looks this disease in the eye and triumphantly yells, “HA!” in it’s face…While lifting heavy weights and running frequent 5Ks. I am all-powerful and will not let my MS get the best of me!

Yeah. So much for that exercise in self-delusion.

I’ve already called my specialty pharmacy today (please call back later, closer to end of day, we should know more then, they tell me). I made it to my office well enough today but my foray into the streets to procure something to eat for lunch was more than a little bit wonky. My muscles are aching like I did a very strenuous workout yesterday (I didn’t). Eyes are blurry as if I’m suffering from lack of sleep (I’m not). I could literally lay down on the floor of my office and go to sleep right this very second.

The see-saw of positive/negative feelings from day-to-day, minute-to-minute, sometimes gets me down. I tell myself I’m doing great. I’m still at the beginning. My life has yet to level out to achieve any kind of new normal. It all just takes time. You can’t rush multiple sclerosis. You can’t ignore multiple sclerosis. You can’t outsmart it either. I’ve personally tried all of those things and failed miserably. Time after time.

I’m going back to focusing on getting my thinking right. It’s a much more productive pursuit where chances of success are much, much higher.

Playing games with drugs is dumb and demoralizing, said the girl with a firm command over the obvious. Bring on infusion day!

 

 

 

Go ask Alice (or Bethybright)

You know the song, I’m sure you do. The one about how one pill makes her larger and one pill makes her small? I used to love singing that song at karaoke night in bars. You know. Back when I went to karaoke night at bars and stuff.  These days, though, I’m living it. 

I started taking a new drug to help my, um, bladder issues. (It should be noted that my family members were simply aghast that I had no scumbadee – made up word my family uses – to post publicly on the interwebs about my pee problems. Oh well!) Anyway. That drug actually works pretty well. I don’t pee my jammies nearly as often. I only get up once a night to use the bathroom, mission accomplished. 

Well. Sort of. Because now this same drug makes it actually difficult for me to urinate. It kind of feels like having an UTI but without the pain? So going takes forever. You just sit and wait. And wait. And wait. Until something finally happens. I read the patient information leaflet and this side effect is one to “contact your doctor” if you experience, so of course I emailed The Great Scott post haste. Of course it was the ever “helpful” nurse Carol who responded to let me know that she had sent in another script for me that should help that “can’t pee when I have to pee” feeling. Ok then. Drug number nine. I’m on it! (It’s also probably worth noting that this drug comes with many precautions one of which tells me to contact my doctor if I have an erection that lasts longer than 4 hours. So there’s that.)

One of those two drugs has the side effect of making me incredibly thirsty all of the time. I can’t remember which one it is – there are so many of them now. But this dry mouth is intense. Like stranded in the desert for months on end kind of dry mouth. The kind of dry mouth that wakes you in the middle of the night to chug a 33 ounce bottle of water. Did I mention these drugs are to help control my problems with peeing? Right. Alrighty then. 

Then there’s the walking drug. I freaking love the walking drug. It actually works. It helps me to walk almost like a normal human! The struggle is, insurance only approves you for one month of the drug as a test to make sure it works. I guess since it costs me $250/month it costs them something insane and outrageous so they aren’t handing that shit out all willy nilly. I got my 30 days worth, two small white pills every day twelve hours apart. Easy. 

Except that I happened to notice while taking my magic walking pill this morning that the bottle is running pretty low. I got a bit nervous and dumped out the pills in my palm to count them. Eight days. I have enough pills to walk for 8 more days. 

The insurance company my HR folks changed to last year is CVS/Caremark. Yeah. They suck. Really bad. I have to get another pre-auth for a longer term supply of this magical walking drug that goes through the same two week review that every pre-authorization goes through. But I only have enough for 8 days. I’m beginning to feel frantic.

I will call them on Monday to inquire about the timing on my refill which will likely be another hour of my life spent on the telephone with the world’s absolute worst customer service that I will never get back. In the meantime, I’m all over the internet asking Google “can I take one dose of ampyra a day and still walk well?” The google is about 50/50 on that one. Therein lies my problem. I may not get my refill authorized before March 16 which is kind of a critical date for me. 

See, I was so excited that my new walking drug actually helps me to walk that I made plans to visit my company’s home office in Atlanta to do a presentation to leadership in person instead of on the phone. I know this kind of trip will lay me out for a week afterwards –  but the timing was kind of critical. 

If I don’t go now, it’s hard to say when I will be feeling well enough to travel for a while. You see, I get my last Tysabri infusion on March 8.  After that, I am going DMT free (or going off of disease modifying drugs, what I like to call the the BIG MS drugs) for three months to flush my system so that I can hopefully get on the new goo that THe Great Scott is so excited about (the new drug everyone is counting on being approved by the end of March). I’m not sure what those three months are going to be like. It could be rather unpleasant. I have no idea what to expect. 

By March 16 and 17 then, by my calculations, the following  cosmic details all come together that should create the best possible trip conditions for a visit to the home office: 

  1. My Tysabri should have kicked in by then (as much as it ever does since neither me nor TGS thinks it’s helping me so much) because it will have been 8 days or so post infusion. 
  2. My new walking drug will make airports and our giant corporate campus less deadly for me!
  3. It’s not likely that it will be Africa hot in Atlanta quite yet, so weather conditions will be suitable for someone like me who can’t function well above oh, let’s say 70 degrees. 

But now I am faced with a pill rationing decision.  How important is it that I can walk between now and March 16? Should I save my precious walking pills just in case I don’t get my refill approved and delivered in time? Should I see how I do with taking one pill a day? But what if that doesn’t really work and then it’s like I’m wasting those pills that I might need for those days later in March when I know I definitely WILL need them. 

This, my friends, is what it feels like to go down the MS rabbit hole. Which pills should you take? Which pills will the insurance gods deem you worthy of and when? Which pills will actually work? Is it worse to be thirsty like a castaway on a desert island? Or is it worse to pee a little when you don’t really want to? Or is it worse to feel like you have to pee but then not be able to pee when you think you have to pee? Will my life grind to a screeching halt when I am forced to go DMT-free? Will my bedside table always look like that?!

I’d like to go ask Alice. I really would. But I’m betting she has no clue at all. I’d probably have to wait for a pre-authorization for a discussion with the white rabbit before anyone will even let me ask Alice anything at all. 

And you wonder why I’m tired all of the time? It. Never. Ends.