When words fail the writer

Rest in peace, Daddy. You did good.

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

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

I remember that now.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The 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.

 

All drugs are not created equal

Color me informed.

Many of you know that I’ve recently started taking Provigil (modafinil) for my MS-related fatigue. The drug isn’t technically approved for this use. It is technically approved for a diagnosis of narcolepsy but it is commonly used off-label for us lucky MS patients who can’t muster the energy to make it through a regular work day without some help. My insurance company rejected me. They rejected two appeals that left me to either sleep 16 hours a day and struggle to continue working (not an option) or pay out of pocket (luckily an option).

My local town pharmacy that I love that fills all of my many scripts was charging me about $11/pill. I found out from my neurologist’s office that I should look into getting the drug at Costco. Some other patients get it there, it turns out, and the cost is significantly less. I checked it out. It was so significantly less that I was incredulous and didn’t really believe it until I had the pill bottle in my hand. Costco was charging me $1  pill and I thought, “YES! Finally, there is something reasonable in the world of health care.” And I happily joined Coscto (even though I didn’t have to, I felt like I should). Then I happily took my $1 pills for about two weeks.

I started to notice myself struggling again. The days were hard again. At the end of a work day, I was struggling to stay awake much past 8PM. I was struggling to get through my basic household chores…all of the usual crap. I thought,”Shit. I guess I’m one of the lucky ones who don’t respond well to Provigil. It must just not work for me.”

One morning I noticed I had some of my old pills, the original prescription from my local pharmacy, in my nightstand. The pills look slightly different. I remembered the sticker I sometimes see on my pill bottles “different manufacturers pills don’t all look alike.” I noticed that both scripts were for Modafinil 200mg but they came from different manufacturers. Hmmmm.

I’m just desperate enough at this point. I figure, “Hell! It’s worth a shot!” So I took one of the old pills. Totally thinking it would be the same experience and I would end up sad and tired and run down yet again.

But that didn’t happen. I found myself energized again. I felt that weird spring in my step that I’d felt the first time I took Provigil – back when I noticed that my legs actually seemed to respond better when I took the drug. I could walk a little faster. I still had to be careful but it was an improvement for certain.

I was a bit skeptical. Maybe I was imaging this! After all, generic drugs are all the same! Haven’t I been told this since the beginning of time? I thought they had to deliver the same degree of efficacy as branded drugs. I sincerely thought those were the rules. I went down that familiar path that I always seem to find – the one where I question the experience of my own brain and wonder if I’m making the whole thing up!

But I wasn’t willing to give up that easily. So I started Googling and making phone calls. It was a harrowing experience that took hours – calling one pharmacy. Then the other. Calling back again. Checking pricing. Checking manufacturers. Calling back again. Getting new pricing. Calling back again. For three hours. Three painful hours of my life I will never get back. But the discovery was mind blowing.

The Costco generic came from one manufacturer, my local pharmacy generic came from another. Costco could get the original generic, the one that worked for me, and it would cost $110/month but would have to special order it for me each month. This would require me to call them two weeks before my bottle was empty, each month. I have so many drugs on so many different schedules that I was already planning iPhone alerts for the entire mess.

So I call my local pharmacy back and explain the whole thing (I like my pharmacist…he wanted to get to the bottom of it too). He agreed to match the price. Easy peasy. But wait. Not so easy. Because Modafinil is a controlled substance, you can only transfer the script once. So now  I had to call my neurologist’s office (again) and get a brand new script that my local pharmacy would then be able to fill.

It was exhausting. But it is now resolved and I am grateful that my local pharmacist took the time to explain the realities of how different drugs from different manufacturers behave differently. The manufacturer of the Costco drug was one my local guy didn’t even have in his system. He’d never heard of it. Turns out it is a company in India (not that that means anything – a lot of drugs are manufactured overseas) but this wasn’t one his wholesaler offered so he never considered buying it. I guess there’s a chance that it works for some people otherwise wouldn’t they have stopped selling it? But it totally didn’t work for me. Like night and day not working. Like no effect at all, not working.

This led me to think about old people.

I know. It’s a leap. But stay with me. I get paid to solve problems for a living. My job is to fix complicated situations, get to the bottom of complicated problems – to dig until I find the right answer. Not everyone has the wherewithal to undertake this particular trip down the dysfunctional health care system rabbit hole. I imagine some people would have just given up. Or chalked it up to their imagination. Or assumed the damn drug couldn’t help them!

Lots of old people probably don’t have people in their lives who can figure this kind of crap out for them mainly because it takes a whole lot of freaking time and energy. If I weren’t desperate to solve this problem, I would have given up too. I didn’t give up because I can’t face a life where I can’t get through an average day or do my job or do anything more than work, sleep, work, repeat. But guys. This is literally insane. Nobody should have to become a part-time private detective to find a drug that actually works that they can actually afford.

I’m relieved to be back on the good stuff. I’m grateful that my local pharmacist worked with me and talked me through it. I’m most grateful that I can afford to pay the higher cost because this drug is kind of life changing and now that I know it’s out there I’m just not willing to not take it. I know I’m so much more fortunate than so many patients who just can’t afford their medications.

This whole experience gave me pause. It made me realize that having a disease is hard. But that’s just the beginning. Figuring out the maze, the absolute mess, that is our health care system is like having another disease for which there is no cure. You have to do the work to get what you need and you also have to do this work while you physically and mentally can’t fathom how to make that work happen.

I have a disease that causes brain fog, debilitating fatigue and pain. It doesn’t really put you in the mind space of preparing to battle The Man!

But battle The Man, you must. Otherwise The Man will always win. I can’t let that happen.

 

The daily Provigil balancing act

Learning the difference between feeling like I can do things and actually doing them and feeling the after effects is my current situation.

Provigil makes me FEEL like I can do anything. So I try. Like today, for example. I did a few outdoor chores that involved dragging my old lady wagon (that’s not a euphemism I really do have a wagon) back and forth to the garage. I wanted to put my spring porch furniture away. And decorate for Halloween! So I did that. Pretty simple stuff. I am feeling Provigil-perfect so in my head I can do anything.

Then I have to sit in my car for ten minutes (writing this post) while my legs stop shaking and until I can walk more at the Target. I guess it’s more learning for me. Learning the balancing act of what’s real and what’s drug-fueled nonsense.

The truth though is that it feels better to feel like I can be back to my old self. Even if my old self is long gone. The mental drag of feeling like a lethargic lump of crap all of the time is for real. Not having that is good enough for me.

I’ll just learn when to stop. And sit. And write a bit.

Drugs are super cheap at Costco…Forreal

OK. My mind is officially blown.

I heard this week that my insurance appeal was denied. My doctor is trying a second level appeal but they aren’t hopeful. I find it completely horrifying that an insurance company can determine what drugs I should and should not take – but that’s actually not what this rant is about.

When she told me about my denied appeal, the nurse at my neurologist’s office suggested I try Costco. She said some of their patients who have dickheads running their prescription drug programs (oops..) have found better prices there. For $10/pill it seemed worth a shot.

So I called Costco. They quoted me a cost of $37.71 for 30 days.

I thought it was a mistake. I asked her several times…basically accusing her of being incompetent and/or lying to me but she repeated, “It will be $37.71 for 30 pills m’am.”

This doesn’t do a damn thing to address the fucked up nature of a system that puts business before patient needs and quality of life. It also doesn’t mean a goddamn thing if you are scraping by by the skin of your teeth and $40/month for drugs isn’t in the budget.

But, wow. I’m sure glad I called. And I will gleefully drive all the way to Homestead to pick up the pills that make me feel human even though it’s not terribly convenient. I’m not currently a Costco member (I live alone…I try to buy things in tiny quantities not mass quantities) and I don’t have to be a member to get this price…but I’m about to be Costco’s newest member.

And I may buy massive quantities of TP while I’m there too. Never hurts to be prepared.

My personal chemistry experiment

My life has become a chemistry experiment.

I mean, on one hand, I guess that’s better than my life being a never ending loop of sleeping, working, trying to watch an hour of tv, sleeping more, maybe read a sentence or two, sleep some more, work again. Sleep even more. Repeat.

That was getting old.

When I got this magical medicine, I told myself I would only take it when absolutely necessary. I told myself it was for special occasions – like the dreaded business travel or the long day of meetings or visiting commercial real estate locations in one long day. I told myself I would ration these pills and use them when I really needed to feel more human, not more not less.

That was, of course, before I took the first one and realized they actually freaking work.

I didn’t feel Solu-Medrol good, nothing could compare to those glorious early days on IV steroids. But I felt almost human, good. Like..me. The old me. I still needed to watch my step, every step. I still needed to be careful and all of that but I felt energized. I could even walk better. Could it be true that when your entire body is fatigued that basic things like walking are harder? And when you’re not fatigued, those things suddenly become instantly easier? Could it be that easy?

The other thing that feels a lot less taxing? Showering. I’ve done it twice this week already. I mean. WHOAH. I know. I can’t believe I’m admitting this here in public either but there you have it. Usually taking a shower finishes me for the day. It makes me tired just thinking about taking a shower. I’ve done it twice and it’s only Thursday.

So I bought more pills. I only bought ten more because the suddenly nice Nurse Carol tells me she is making a holy stink at the insurance company and she’s pretty sure I’m gonna get my appeal approved so I should hang in there. And then I was gonna save the ten pills too. Maybe every other day?

Here’s the thing. I don’t want to feel like shit for one more day. Not even one. And I have a degenerative disease which basically means that, short of some kind of modern medical miracle, it’s going to just get worse. The idea that I can take a pill every day and feel pretty ok? It’s intoxicating.

So what if I have to set an alarm to get up extra early to take a pill. So what if I have to plan my bedtime to make sure my body (the one that doesn’t feel like it needs rest while dosed) actually gets a lot of rest anyway because the feeling isn’t real. I do need the rest so that means I’m constantly doing simple math in my head…how many hours between taking the pill and drinking coffee? How many hours of sleep if I set my alarm for 6AM? How many chapters can I read before I have to take my nighttime spasm drug that knocks me out? How many, how long, how much?

It’s so worth it.

I’ll budget if my appeal doesn’t go through. I will spend the money and I will take the pill because it’s not failure to admit you need medicine to feel human. I need medicine to feel human!

That’s not giving in. That’s goddamn science!

Provigil vs. Baclofen

In the battle of provigil vs baclofen…One wakes me up. One knocks me out…

Provigil is winning. I’m wide awake. It’s 4AM. And beginning to panic about the wasted day I’ll probably have tomorrow.

Oh well. At least I had the sense to take off. After that 10am conference call I can take a nap, I guess?

Adventures with Provigil

I took my first dose of Provigil today.

I’m not sure I loved it. I felt kind of tingly and buzzy all day. Of course, I sort of forgot to eat much and I had a giant coffee so that might not have helped. I forced myself to eat a little turkey sandwich. Then I went to Gina’s for dinner.

Here’s what my brain is like on Provigil…I’m talking or thinking about one thing one minute, then I’m on a completely different track the next.  I have hard time maintaining my focus and train of thought. My legs felt kind of shaky. Shakier? I don’t know. Just funny. Though it is 8:53PM and I am still awake and alert. I wonder if I’ll be able to sleep?  I took it today because I don’t have to work tomorrow so if I don’t sleep, it won’t be a disaster. Also, I wanted to know how I would react to it before I take it for my new business trip later in the week. I leave on Sunday morning for an overnight back to Charlotte for a pitch meeting on Monday. If I’m going to be all jumpy and crazy, I kind of want to know before I’m jumpy and crazy in front of potential clients.

But I guess the upside is, it does indeed give me more energy. Maybe it’s worth the $10/pill I have to pay for it. I probably won’t have to take if every day – maybe even every other would be ok. Or maybe I’ll just take it when I need it. Like when I have to travel. Or when I want to have a night out (god…remember nights out? I almost don’t).

I kind of miss people. I mean, don’t get me wrong. Ninety percent of the time I’m perfectly happy without people. I am happy at home, watching TV or reading and just being. But I haven’t had a social activity outside of work in ages. I just haven’t had the energy or desire. So if this crazy drug can give me the energy to be more social and, well, alive then maybe it’s worth it to feel a little buzzy.

I guess we shall see.