Two Month Flush: The Breakdown Edition

The front porch that did me in.
I’ve been feeling particularly shitty lately, as I think most of you probably know. It’s meant taking everything pretty slow, resting a whole lot and pinning a lot of hope on an elusive drug that I was only recently approved to take. But not quite yet. I still have at least two weeks left in my two month flush post-Tysabri.

The short story is that I believe this shitty feeling that has come down on my head like a dull, aching torpor is temporary. I mean, what else do you tell yourself when you feel like the wheels are coming off of your life and you don’t know what’s coming next?

It will be fine. This is temporary. It will get better. This is the two month flush and you knew it was gonna suck.

Today got the best of me, though. Most of you know, I live very happily alone. You might also know how much I love my home, the first place I’ve ever lived alone that I bought and had restored for myself to my very particular specifications after my husband died in 1997. You could say this house, my home, has become the embodiment of my safe place. The place I can go when things are hard and feel instantly better. The place where I can hide from the world and feel happy, content and protected. The place where I feel safe.

But lately? Lately, my home has become a source of stress for me. It starts with the fact that my MS presents itself mainly with crushing fatigue and mobility issues (walking problems, muscle weakness). Have I mentioned that fatigue? Right. I guess I did. So I’ve been making little changes to help keep my sanctuary an actual sanctuary and not a source of constant stress. Living alone, taking care of an old house, it’s inherently taxing. So I did some obvious things to make it less taxing.

I got rid of a lot of extra stuff. This stuff not only bore down on me physically due to it’s constant need to be moved about, organized and dealt with in some manner but it also bore down on me emotionally. It’s not a lot of fun to look at clothes you can no longer wear because they take too much effort to don, or require high heels for length reasons. It makes you feel bad, like you’re compromising the things that make you, you. The solution seemed pretty obvious. I got rid of a lot of stuff! Bye bye extra stuff. You can haunt me no longer. And it felt good.

I tried to eliminate things that required other people to help me, such as, instead of annually begging people to come over and help me with window air conditioning units each summer, I installed central air a couple of years ago. Easy! Now I can just turn on a switch and cool air come outs and I can thus deal with the summer heat. How easy was that? Done. On to the next thing.

I couldn’t get into my giant jacuzzi tub so easily anymore so I had it torn out and put in a walk-in shower that is so much easier for me to use. It was such a relief not to have to vault over the side of that insanely huge tub in order to take a damn shower. Not that I take more showers now than I did before or anything, that would just be insane, but it was a source of stress so I removed it.

I have trouble keeping up with the cleaning of this house what with the four giant shedding felines who allow me to share their domain, so I had to hire someone to clean. I did this well before I had MS, don’t get it twisted I have a very clear lazy streak that is undeniable, but once my old cleaning lady dumped me because I asked her to do some more intense cleaning after my diagnosis, I had to find a new person who would be able to help me keep up with the constant hair and reality of keeping a house clean when I can barely get myself out of bed to get to work. It took awhile, but I did find someone who came highly recommended and while it costs me much more money than my old cleaning lady did – it’s worth every damn penny and boom! Another problem solved.

But for all of those things you can pay someone to do for you, there are the things you really have to do yourself. There just are. It could be because you’re impatient, or too particular (like the fact that I don’t let my cleaning lady change my sheets because I don’t like the way she does it…hmmmm I just said that) or because you think you SHOULD be able to do them.

Today I was almost beaten by a few of those things.

The weather has changed. It’s getting warmer out and the birdies are singing so it’s time to clean up the front porch and put out the pillows and chimes and things that make me happy in the spring time. I thought to myself, “I might not be able to do this by myself.” But I quickly shushed those thoughts because I did it last year and goddamit I’m tired of no porch pillows on the swing and chairs and stuff and how hard could it be? I would rest between tasks. I’d go slow. It would be just fine!

I walked back to my garage to gather my wares. I loaded the garden hose (for porch cleaning) into my wagon. Then I loaded in the bags of porch pillows I had stored in there for the winter. Then I found my porch chimes that I love to hear twinkling in the spring time when the windows are finally opened and it’s not too hot yet for the air conditioning to stay off. I wheeled all of these things to the front of the house kind of laughing to myself because, oh my god, I OWN A WAGON! And I was using it to limit my trips and I’ve officially become that old lady. With a wagon! But I digress.

It started to go bad when I put my 30 foot garden hose back on it’s holder. Thirty feet of hose is heavy. And no, I do not need 30 feet of hose but there you have it. I managed to lift it on to the hose holder attached to the side of my house. I connected it up to the nozzle. BOOM! Victorious.

Or not. I had placed the giant hose on the holder with the loose end with the nozzle on the bottom so I couldn’t get it to unwind. I had to lift if off the holder to change it. Somehow, I lifted it off and then dropped the whole damn thing on the ground and rested before I RE-wound the whole hose back on to the holder the correct way.

I sat and rested once the whole damn hose was re-wound and in it’s proper place. I turned the water spigot on and nothing happened. Oh! Right. I had to go down in the basement to turn the water on to the outside. Easy! I walked really slowly down the steps to my basement. I was pretty shaky by this time so I sat and rested down there for ten minutes before I turned the turny-thing connected to my pipe to turn the water on to the outside nozzle. It immediately begins to drip water on to the basement floor. I’m sure it will stop, I tell myself and head back outside to hose off the porch.

I get to the hose and turn the water on and promptly drop the spigot to the hose nozzle on the ground facing upward and it sprayed me directly in the face. OK. That’s comical and nobody saw, so yay me. I can do this!

My whole body is on fire by now. I wish I could explain how few steps I’ve actually taken to get all of this accomplished but those few steps are apparently much too much for me so I sit on various porch chairs and lean on railings until the porch is hosed off and I can begin placing cushions. I sit flat down on my still wet porch swing because I can’t stand up for five more minutes. I can feel my yoga pants getting wet as I sit but I don’t have it in me to stand up.

I can’t keep myself from thinking over and over again, “I did this last year! It wasn’t this hard. I did it AND I planted flowers and it looked glorious and it wasn’t this hard.” See photo below for last year’s finished product:

OK, I did plant the flowers on another day and it took me a really long time to do it while mostly seated but I did it. And it looked lovely. Having my porch look so lovely makes me happy. I wish it didn’t because as it turns out, I can’t easily do this year what I could do much easier last year. I think this means I’ve gotten worse.

I know this means I’ve gotten worse and it is starting to really eat at my broken brain.

I finished hosing off the porch, re-wound the hose, attached all of the various cushions to various chairs – and between each step I would rest or sit down and wait out the fire in my lower back and the shaking in my legs to stop because that’s just what we have to do now! We have to rest between the steps of any job and it makes everything take longer but it means we can still do things ourselves. (We also start thinking of ourselves in the plural for some reason, because with my internal monologue that is going on the entire time I’m stumbling around outside, it sincerely feels like I’m talking to someone else and not just myself. All of us are weak and stumbly by now.)

I come back in the house and decide I better go back down to the cellar and make sure that pipe isn’t still leaking. That’s when I see this:

My unfinished basement where old cat trees go to die.
Ok. So it’s not stopped leaking at all and is now, in fact, creating a river that runs through my thankfully unfinished basement. I immediately turn that water back off and sit down. To rest. AGAIN.

That’s when it happens. It hits me that doing these very basic tasks, even with frequent resting, is really too much for me. I should say, “…is really too much for me today” but I’m not feeling all that optimistic at this point.

I start thinking about the flowers I will want to plant in a few weeks. I start thinking about the work I have to go to tomorrow and the busy week I have in front of me. I start hearing the three different doctors that I saw just in the last week tell me over and over again in my head how important it is for me to exercise. “When was the last time you walked a mile, Maribeth,” asked The Great Scott himself. “You really need to find a way to work out Maribeth. You don’t want your muscles to atrophy,” said my very helpful gynecologist using the exact same words she said to me last year around this time. “Maybe swimming? Some people like yoga,” said my brand new primary care doctor who didn’t even like the sound of the idea of actually doing yoga herself.

How am I supposed to do those things when I can’t even do the regular things? Regular things like waking up, working, going to lunch, doing very minor seasonal chores, feeding cats, doing laundry, making dinner, going to the grocery store, getting kitty litter, scooping kitty litter on two different levels of my home, changing the hair infested sheets…Just freaking EXISTING.

I have read a lot from other Single Spoonies. I do know I am not alone. I know there are other people out there who are trying to deal with this stuff by begging favors and asking family members for help and making dates for helpers to come over and adding to the ever growing list of people we pay to do normal tasks (I’ve taken to thinking of them as my other staff). I know this is what it’s like. I get this intellectually.

I can’t stop looking forward to the day where I finally accept it. Or where it doesn’t feel so goddamn overwhelming. I can’t stop looking forward to the day where I don’t crumple in a ball and cry on the phone to a poor friend who happened to call me at the second I metaphorically tumbled right over the edge (well, it wasn’t a total accident. I may or may not have texted this very helpful friend with a desperate cry for help).

I didn’t expect a phone call though. People don’t do that anymore! I knew I had to answer because if I didn’t he would think I was rolling around on the floor unable to get myself to my feet. I wanted to stop the waterworks before I said ‘hello’ but hearing another human voice at that very moment just made me cry more.

He made me laugh. That’s a damn good friend. Then when my god-send of a nephew stopped by to help carry the five boxes of kitty litter into my house from my car, it happened all over again. My darling boy who I usually am trying to help in some way was helping me. He sat with me in my chair and a half while I cried and told me everything would be OK. He would always help me with my chores (and yes, that made me cry harder and I’m crying again right now just thinking about it).

I thank the universe I have these people (and many more) in my life to help me get through it when I can’t see my way to feeling hopeful. I know it’s the two month flush. I knew it was going to be bad. It’s funny how that knowledge doesn’t make it any easier when your body just freaking craps right the hell out.

I’m going to bed now. It’s not even 9:00PM but that’s how I roll these days. I have to take a shower tomorrow. I have to go to the office, finally, because there are things I have to do while connected to the stupid on-site network. It overwhelms me just thinking about another two weeks or more like this. It brings forward the terrible thought that is always lurking, sneaking around in the back of my broken brain…

What if the new drug doesn’t work?

Then I immediately shoo that thought. I look out the front door at the sun setting over my neighborhood. It’s really gorgeous tonight. I remind myself that the ability to sit here looking at the sunset from my comfy chair inside my personal refuge is only one of the ways in which I am incredibly fortunate.

It was even prettier in real life.
It has to work. It just has to work.

 

Another quickie

It was a good day today. I know I write a lot about the bad days so I thought I’d change it up and mark one of the good ones. 

Here’s what made today so entirely good:

  1. I was on vacation. Day two of guilt-free living. 
  2. I found out today I am officially approved for Ocrevus!! CVS/Caremark didn’t screw me!
  3. I also found out today I was approved for the Ocrevus patient assistance program which means I will pay a hefty sum of FIVE AMERICAN DOLLARS for my twice yearly infusions. That is not a typo. 
  4. I saw my precious, aka Cheryl my Therapist, and we both felt very happy with my latest epiphanies. 
  5. I had a blue plate special dinner with one of my best and longest friends. We met in kindergarten. She met me at 4:30pm. She didn’t care about my yoga pants or my lack of makeup. We laughed and laughed. 

Today was a good day. I’ll take it. 

The waiting is the hardest part

I’m on my two month flush without DMT’s while I anxiously await approval for Ocrevus. Recent drama didn’t really make things easier (hello? Stress makes my symptoms worse. Good times). But now that’s over, I’m back to the waiting. 

It’s weird. I don’t feel as bad as I thought I would but I also feel extra slow. Like my body just wants to sleep and sleep, resting itself for what’s to come. Or something. My body has a mind of her own and she doesn’t always let me in on her logic. 

Transitions are tough on the new me. Transitioning from winter to spring is a big one. The sun is shining, the air is warmer and along with that comes a long list of transitional chores…swap out the clothes, put the coats and blankets away, clean the front porch, drag out the porch pillows and chimes, plant some flowers, drag out the garden hose and put it back on its holder for summer watering…spring cleaning in general. 

My mom was telling me yesterday that I obsess over too many things. Nothing is so important that it has to get done NOW. “Just do something, one thing, and it will make you feel better, Bethie, but stop letting all of it get to you,” my wise mother told me yesterday at Easter brunch at her house. “It will get done eventually,” she said. 

So this is my motto for my flush months…I’m gonna give it my some. Shout out to my awesome new friend Alicia for the find. She gets it. 

And yeah, I hired someone to do the spring cleaning. I’m not that crazy. The whole working thing is good for making such things possible and for providing the vacation days (like the one I took today) to “vacation” which now means something entirely different to me than it did before. Vacation used to mean adventure and fun and travel! Now it means resting without all the guilt. 

So I’m gonna give it my some. Cause that’s what I have to give. 

I’ve been kind of quiet lately

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Be kind. The end.

It’s (not) infusion day

And I’m having my damn soufflé, anyway, so take that Great Scott. Take that. 

Instead of my infusion I got to sign the paperwork for the new goo. Three signatures. No giant black type telling me “THIS COULD KILL YOU” on any of the pages (good sign). New order for blood work since there’s a one in 200 chance I have hepatitis B and would therefore need to pay close attention to my liver functions (“we’ll get you approved either way…it just makes things complicated,” said TGS). I knew I wouldn’t avoid the needle completely today. I just knew it. 

This extraordinary exchange happened:

TGS: We’ll stay in touch over the next couple of months. We don’t want you to relapse. 

Me: Well. As we’ve discussed and agreed to before, I’ve never actually gotten to that whole remission thing yet so I’m really hoping it doesn’t get too much worse. I need to function. 

TGS: If that happens we may consider steroids. 

Me: I know you insist there is no difference but oral steroids don’t work so well for me. IV steroids are the only thing that has ever made me feel better. 

TGS: I’m sorry but you’re just wrong. The studies – there are many studies, prove that they are exactly the same. 

Me: Ok then, so my actual experience with both methods means nothing?

TGS: Listen, some patients think what they think. You think eating ice cream makes your pee orange so that has to be true. It’s just not. 

Me: Didnt you tell me last time I saw you that physical lesions on my MRI aren’t indicative of how my disease is progressing? Didn’t you tell me that the ‘way the patient experiences and reports their symptoms’ is the best tool you have for evaluating my disease progression?

TGS: Yes, yes I did tell you that. 

Me: But my actual experience with oral steroids versus IV steroids isn’t relevant? How is that different?

TGS: Well, in that case, you’re just wrong and I’m right. That’s all there is to it. (Laughs)

Oh. Well then. Consider the gauntlet thrown, Great Scott, challenge accepted. I will be googling studies to prove you wrong in every second of every day where I am not either sleeping or working because I really hate when someone tells me “you’re just wrong.” Even when that someone is The Great Scott. What I actually said to him after this last statement? 

“Well whatever. You could be wrong too.”

He laughed. Then he started quizzing his student, Aviva, random questions:

TGS: How do mononucleotide blah blah stuff I can’t say work?

Avila: Well I believe they blah blah blah things I don’t understand. 

TGS: Well no. That’s wrong. I guess you had a fifty fifty chance. Now check Miss Nigro’s visual fields please. 

Poor Aviva. She and me are on the same team. I smile at her. She says, “He’s funny that way.”

I say, ” Well that’s one way to put it.” She winks at me. The Great Scott laughs again. My visual fields seem just fine. 

I got to Quest to get my blood work in time to also get to Panera before 11am when they mysteriously take away the soufflés somewhere where you cannot buy them. I enjoyed the crap out of that soufflé. 

Oh. One more thing. “What can I do about this physical fatigue over the next several months while I’m waiting for the new goo?” I asked. 

“Lose weight. Exercise. That’s all you can do,” says TGS. 

I sigh. “Really? That’s what you have for me? Does it make sense to you that I am so fatigued that it wears me out walking from my parking garage to my office and you want me to exercise?”

“Well it’s your only option. It’s just the way it is,” he says to me. I see Aviva roll her eyes behind his back. 

“Well it’s stupid. I have to work. I have to maintain my home. I am single. I need my job. I can’t just ‘find time!’ Who do you think I am? Goddamn Montel Williams?! I actually have things I need to DO that suck up what little energy I do have. Things like showering. And laundry. Yeah. That’s just the way it is,” I say. 

“Ok then, it was great seeing you today Maribeth. See you again in August. Aviva, please bring my tools to exam room 14. Have a great day Maribeth. If you don’t hear from us to schedule you in the next three weeks, give us a call,” TGS says as he walks out the door. 

It’s gonna be a long few months. 

The problem with “and”

This basic thought has been bothering me all week but it’s such a fundamental “a-ha” moment for me, I feel compelled to record my discovery.

It’s so simple it’s kind of annoying. I’m talking about the simple fact that we live in an “and” society but thanks to multiple sclerosis I am quite firmly becoming an “or” girl. I used to be an And Girl. I was trained from a very young age to do this and that. Go here and there. See that person and this person. Have this job and this social life. I was taught to believe that I could have it all – everything I wanted – if only I worked hard enough and gave my best effort at everything I did.

It worked. I did pretty well for myself being an “and” girl. I worked hard and I had fun. I did chores and I socialized here, there and everywhere, with this person, that person and the other person. I loved my home and I loved exploring the world. The list of places I racked up under my “been there, done that” column got to be pretty impressive. I was living that dream and enjoying (most of) it.

That’s why it’s so hard for me now to realize, like I’ve been hit by a ton of proverbial bricks,that I am now quite literally being forced to become an “or” girl. A wicked combination of a later-in-life diagnosis of multiple sclerosis, and just freaking being later in life in general, combined to create this person I have become who must choose daily, even minute-by-minute this OR that. Very rarely both.

I’ve been living in the land of denial. Complaining to friends about how pathetic it is that I get tired so easily. My daily life takes so much out of me that sometimes I find myself only out of bed an hour or two before I’ve run plum out of spoons. But I still have the rest of a long day to get through. Spoonless. It happens more than I’d like to admit.

My best friend often tells me, “Don’t be so hard on yourself. You have a reason why you feel this way. You can’t help it.”

Yeah. That doesn’t really sit so well with me. I’ve never been a person who does very well with being told I could have this or that, do one thing or the other. I wanted both. I wanted more. And goddammit, I would be the person who proved everyone wrong by doing exactly that thing people told me I couldn’t (or shouldn’t) do. I took joy in it, really. I reveled in having it all, while being on my own, and living my very best life. I felt victorious.

Imagine how I would deal with my own body forcing me to say “uh-uh you can’t do that.” You are probably imagining the very struggle I find myself in each and every day.

I can shower OR get to work before noon. I can be effective at work OR I can put my health first. I can be successful in my career and thus pay my bills OR I can have fun. I can get up early OR have a late afternoon meeting. I can’t do both. Not both of any of those things. I can put on makeup OR I can sleep longer. Guess which things I choose?

My favorite illustration of this concept is my recent experience attempting to take a business trip (and failing). I realized I could shower OR have energy to walk through two airports and get myself to our corporate “campus.” I could do my presentation and put on a good show OR I could have dinner with colleagues later that evening. I could have meetings all day long trying to be my in-charge managing director self – OR I could walk without falling. There were so many ORs that I knew would be ANDs that it overwhelmed me.

Oh wait. There was one more. I could take the drug that helps me be focused and alert for a few hours OR I could be sane and able to function. Turns out, when I take Provigil too consecutively at my full dose it does bad things to my brain. Really bad things. Color me informed.

I am getting better at accepting this. I have two 9AM meetings next week on consecutive days because, well, it should be obvious by now that if there is a god, she pretty much hates me. I know that to make this happen, I will have to be in bed by 8PM or thereabouts the night before to make sure I can be out of the house by 7:15AM (have I mentioned that my body literally doesn’t work in the morning? I need very much extra time built in for pretty much everything).

There will be no showering. I can’t shower AND get to my meetings on time. Something has to give. I have to accept that I can do basically nothing else next week. There’s the OR busting up my plans to live a full life! I can make it to two 9AM meetings on two consecutive days and perform effectively AND have two days (or more) of recovery to get back to basic functionality.

Today I allowed myself to sleep in (pretty much like I always do on weekends) but I knew I had a few chores I wanted to accomplish over this weekend. Nothing too scary! My list of things to do included:

  • Go to Target for necessary supplies
  • Get cat food at Petco
  • Go to Giant Eagle- grocery store- for the things I can’t get at Target
  • Drop off dry cleaning
  • Do laundry (most of my favorite clothing, i.e. my pajamas are dirty)
  • Make myself something not terrible or unhealthy to eat

It’s a reasonable list. Not very taxing. But for me, here’s how my morning went:

Get distracted by overwhelming desire to purge my life of excess stuff. Find myself organizing excess makeup into a bag for giving away. Get even more distracted pulling things out of my closet for the great clothing give away I am planning in the coming weeks. Get through fall/winter dresses and shirts, think about doing spring/summer dresses too – and stop myself knowing I am already worn out.

Brush my teeth. Scoop litter on two different levels of the house. Put on “clothes” – meaning my weekend uniform of black yoga pants and black long sleeve t-shirt. Stumble down the stairs to take morning meds. Realize I left the dry cleaning upstairs – head back up the stairs to get it. Walk out the door realizing I’ve yet to eat actual food or have any coffee. Dammit.

Drop off dry cleaning. Head to Target and spend $300 on things I definitely needed and some I probably didn’t. Drive home. Sit in the driveway for 15 minutes posting on Instagram because my legs are too tired for unloading. Realize I forgot to go to the Petco or Giant Eagle. Tell myself tomorrow is another day and unload my bags from Target. Put away kitchen supplies, begin making food. Realize I cannot stand in front of the stove, so I sit on my kitchen step stool while cooking. Stand for five minutes. Sit for five minutes. Repeat.

I had every intention of doing that laundry. But guess what? Ain’t gonna happen. I’m currently resting after enjoying my delicious (and healthy) concoction that I’m calling “fancy girl hamburger helper*.” I paid my nephew $15 to go down to the basement to scoop my litter boxes. He probably would have done it for free but I like to help a kid out, ya know?

I stand at the kitchen sink long enough to do the dishes and feed the cats when I realize I need to sit down for awhile. I decide to write this blog post while I rest, gathering up the energy required to climb the stairs to my second floor to don my pajamas (please dear god let there be one more clean pair of pajama pants in my drawers). Once that is done, I will go back downstairs to try and watch something on TV before I climb the stairs again to collapse in bed once more. I will lie there, a few minutes, and wonder what things I didn’t do today I will find the energy to do tomorrow.

I will probably read a little before falling asleep, because that is my reward for getting through a basic day. I will sleep in late tomorrow (again) and try to choose between this OR that really basic stupid chore.

I watched a video online this morning where Montel Williams (who also has MS) talked about how he has basically dedicated his life to his health, 100%. He always eats right, he always exercises, he makes sure he is always well rested and he finds the right doctors to help him. He is 100% focused on optimizing his life in such a way that MS will not destroy his happiness. It’s a full time job, said Montel, if you want to live your best life.

I found myself wondering…Hmmmmm.

I guess Montel probably doesn’t have to get himself to work every day like I do. He probably removed the things from his life that got in the way of his 100% focus on his disease. I envy him for exactly one minute then suck up a big dose of reality telling myself that this is simply not possible for a Single Spoonie such as myself. It just isn’t. So I organized more clothes for giving away and went about my daily business (see above).

It’s hard not to resent it. It’s hard not to imagine this getting really old really fast. I want to be an “and” girl again. I really loved that girl. I really loved how she found time, energy and verve to do exactly everything she wanted to do. I love how she would do nothing as often as she wanted to and enjoy it, not resenting it or feeling badly about it. I now have to choose between things that are so basic it doesn’t seem fair that I should have to choose at all! It pisses me right the hell off.

Then I remember the wise words of yet another friend…”It can always be worse.”

Holy crap. It really, really could. It really, really will probably actually BE worse at some point. I better figure out how to stop resenting this shit. I better just suck it the hell up and start choosing between this OR that and getting on with it.

I’m not Montel Williams and I can’t dedicate my life to optimizing my health. So I should probably figure out another way around all of the “ands” in my life.

They just don’t work anymore. That’s all there is to it.

*Here’s how to make Fancy Girl Hamburger Helper…Get yourself a pound of grass fed ground beef from Aldi’s for $5. Saute that in a large skillet with a bit of olive oil. Boil water for some Barilla Plus Protein elbow macaroni (both high protein and high fiber, chick pea pasta). Once ground beef is browned, add in some chopped organic green onions, salt/pepper, a dash of my mom’s secret ingredient (celery seed…sorry, Mom). Add two cans of organic, no-sugar added tomato soup. Marry the pasta with the beef by adding one can of well-salted pasta water to your beef/tomato soup mixture…Simmer for a while. Viola. This is really delicious. Not even a little bit high-brow but so tasty I will have yummy dinner for most of the week AND not kill myself doing it. Winning? Sort of. It can always be worse.

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.