Today I learned about spoons

I spent the day managing legal processes and contracts. Not my favorite part of my job, but it kind of goes with the territory. When I could officially take no more, I distracted myself with my usual crutch…social media and the Internet. While perusing some of my favorite MS-related blogs, I ran across this blog post on a web site called http://www.butyoudontlooksick.com that talked about The Spoon Theory.  It has been on my mind ever since.

The Spoon Theory is a tool this writer used for explaining the daily challenges of chronic illness. She was in a diner talking about it with a friend – what it’s like having a chronic illness, how it makes you feel. She looked around her and grabbed a bunch of spoons and handed them to her friend. She explained that every daily task – no matter how small – would cost her a spoon. And when she was out of spoons, she was out of spoons. She was done for the day until a new day starts with a new bunch of spoons.

Getting out of bed. Taking a shower. Getting dressed for work…all cost you a spoon. The point she was making is that when you have a chronic illness, it’s something you always are aware of and managing around (kind of like holding a bunch of spoons – that is hard to ignore). Admittedly, she made this point in a much more elegant way than I am making it here. You should go read it.

The Spoon Theory illustrates the simple reality of what daily life is like with a chronic illness. Everything you do has to be strategized and planned like a grand scheme just to make sure you can make it through your day without “running out of spoons.” Or borrowing too many spoons from the next day meaning you have two or more days without spoons to recover before you get back to normal. You conserve your spoons when you know you have a big task (like travel for me) and choose your spoons wisely when there are things you simply have to do (like work). At first, I thought it was a weird analogy. But now I kind of like it. It makes sense to me. It easily explains what my every day is like.

I’ve adjusted. I know I can’t do everything I want to do – sometimes I can’t do anything I want to do, not to mention everything I need to do. I need to plan and allow for things like rest. I need to ask for help when carrying 100 pounds of kitty litter into the house from the front porch is on the daily list of things to do. (I will never have enough spoons for that.)

It’s just the way it is. The thing I really hate wasting spoons on lately? Showering. I cannot tell you how many spoons showering requires from me. This week? I showered on Monday. And because I was busy with work all week and not able to be as flexible with my time as I need to be, I didn’t shower again until late this afternoon. It’s Friday, for chrissakes. But I have to choose. Work or shower. Fun or sleep (sleep wins most of the time). Style or comfort (again, guess which one wins?).

I am comforted by this reading and discovering writers who understand exactly what my new life is like. I feel like maybe I’m not crazy after all. This is just that fucking hard. It’s so hard that it’s hard to explain how hard it is – like that’s a spoon I’m just not often willing to give up on most days. So I find myself closing myself off a bit.

I just don’t have anything to say in most normal social situations. Thinking of not talking about how I feel or how hard this is, is sometimes just too much trouble. I guess I’m not willing to give up a spoon for that. Pretending to have something better to talk about takes effort. Making social plans takes effort. I’ve been kind of quiet on the social front, you might say.

Most of my spoons are spent on work these days. It’s just how it’s going to be for the time being. Work is too important to me right now – not just for the interaction with actual people that sometimes saves me from myself, but for the simple reality that my freedom and independence rely on my having a job.  They rely on my having this job. So that’s where my spoons are going lately and I also have to be ok with that. It’s just the way it is. I’m lucky. I do love my job (except for when I am playing a part-time lawyer but that’s not every day). I work with people I truly consider friends – so there’s an undeniable social element to it. I’m good at it, so there’s an element of pride there. It makes me feel useful, purposeful and alive. I need this job for more than the paycheck. I need this job for my sense of self.

I don’t know if I’ll always feel this way. I don’t know if I will always allocate so many of my precious spoons to the activity that supplies my paycheck. Spoons, you see, are in such short supply. I have to believe that I won’t always feel this way. But I feel this way now. My work is part of how I stay part of the world I’ve come to see as my life. My work connects me to people. My work lets me use my brain in a meaningful way, and we all know how much I need to use my brain (maybe I should have been a lawyer after all).

I guess I’m thinking about this because it’s another quiet Friday night. Me and my kitties are at home not doing much now that the work for the day is finally over and my “to-do” list for next week has already been crafted (thanks to my spotty brain, I am always haunted by the fear that I will forget something important…in addition to spoons, my life is also suddenly full of little lists). The weekend is ahead of me and I’m trying to think about what I’m going to spend my spoons on.

I’ve been putting off grocery shopping for weeks. I have a basket full of laundry, that might take a spoon or two. Wow. That’s not what you call a weekend chock full of enriching activity. The most enriching activity I will probably do this weekend is sleep. I live for when I don’t have to set an alarm and tomorrow is one of those days. It’s supposed to be sunny though. So, that will make me feel like I need to be more productive.

Sometimes I can’t believe that my weekends now consist of deciding whether to do laundry or go grocery shopping. Sometimes I forget how fucked up that is. There was a time, not that long ago, that I used my spoons on things like happy hour and dinner out. Maybe some day, I will feel like doing those things again? I wonder if there will ever be a day when I have enough spoons to work AND enjoy myself?

I can hear Cheryl in my head telling me…”You’re just at the beginning. Don’t think about forever just think about today. It will get better.” I don’t know why that’s so hard for me to believe sometimes.

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.

 

Changing my mind about changing my thinking

My shrink, my beloved Cheryl, has been gently trying to help me accomplish the enormous task of changing my thinking.

I mean, this isn’t a new idea. She’s been trying to get me to master this task related to life in general for years. YEARS, people (like more than a decade). She is dedicated to my mental health and I think she sees me as the great challenge of her long and illustrious career.

But now that I have MS, she has turned up the gas on the “changing my thinking” goal.

You see, it’s her belief that my thinking has a direct affect on how I not only manage my MS but also on how I experience it – meaning, if I think shitty thoughts I’m more than likely going to feel shitty.  While it is my customary protocol to argue with her for at least three sessions before I give in to any of her sage advice, this time I am giving in a bit more readily. Don’t tell her! But I think it might make some sense.

Today, for example, it’s Monday. I usually begin my week worried about all of the things I might not be able to do as well as I would like because of this damnable condition. The thing is, I have a job. I have a job I love that probably contributes more to my life than just my paycheck (which is appreciated and kind of critical to my existence, don’t get it twisted).

My job is something I’m good at. It’s what you might call a natural talent. I’ve never had to worry that I’m not suited for my job. It’s always been the one thing I take for granted. This particular job, the one I have had for the past 13 years is that rare unicorn that results when the planets align and you somehow find yourself at the apex of your career and you also happen to be in exactly the right place. I almost have no idea how it happened because there were many times in the last couple of years where I doubted if I’d even have a job at this time. Somehow it all worked out. It worked out wonderfully. And I am truly grateful.

My MS gets in the way sometimes, though, as you might expect. It’s mostly the fatigue that messes with me on a fundamental level. My job requires me to not only be here but to also be HERE. I need to be present and engaged. That’s sometimes hard to do when you’re wondering if you’re going to make it past lunchtime.  My job also requires me to be in charge. I need to be able to run a room. Make people listen. Help people get on board. Help them see why what I’m saying is true and something they should pay my company lots of money to do. I have never worried about this before. Again, it’s always just come with the package! Like opening my eyes and seeing in the morning, this was something I took for granted.

What if I couldn’t do this anymore? What if me at 60% or even less wasn’t enough to get it done? What if I couldn’t make it happen anymore? I know this sounds silly. But when you’re questioning your ability to get out of bed and walk to your car, it’s not so silly. It’s real as hell and it freaking haunts you.

I have to be able to get from here to there and still be able to do my job. I have to be able to walk and talk at the same time. I have to travel! It just comes with the territory. I have to be able to be presentable in a meeting (i.e. showered? My standards have admittedly changed but clean is generally good). I have to be able to do all of these things on demand, not when I feel like I can, but when they need to happen usually on someone else’s schedule.

Then you start to panic. This disease isn’t cheap, folks. I have friends who are struggling with financial woes on top of the MS-woes and I honestly don’t know how they do it. I work for a company that provides me with fantastic benefits – both medical and practical. The simple truth is, this disease gets in the way of me doing my job as easily as I always have but at the very same time I wouldn’t be able to function while having this disease without this job…do you see the irony?

So here’s where the changed thinking comes in.

I’ve started to realize that I actually am able to do this job and have this disease. It might take some extra planning, some magical medication and some understanding on the part of my team, my clients and my company but the truth is, I can still do this job and I can still kick this job’s ass. I’ve had some good things happen lately that make this fact irrefutable in my mind, finally.

So today, instead of having Monday dread, I am focusing on changing my thinking. I’m thinking about how focused and clear I am (thanks Provigil). I’m thinking about how my shoes are comfy and flat but also kind of cool (thanks John Fluevog). I’m thinking about how excited I am to get started on something brand new and exciting that will let me do what I’m really good at doing (thanks a TON new client for picking us!). I’m thinking about how I will manage the inevitable increase in travel and how I will deal with the travel-related-cat-pee-incidents because I just will (thanks…self deception and blind optimism?).

None of this is easy. I am still falling apart inside and out. But this whole “changing your thinking” thing? Cheryl might be on to something. Do NOT tell her I said that.

My so-called perfectly curated Internet life

I’ve always been somewhat of a loner. Sometimes when I say that in front of people, they are aghast. Not you, Bethie! You’re not a loner.

But it’s totally true. I am a closet loner. Somehow I’ve developed into  person who can be two things all at one time. I am both the supreme social butterfly and the extreme introvert who would almost always prefer to be at home, in my cozy lounge wear cuddled up with many kitties on my favorite couch. But since my life started going wonky a few years ago, even before my actual diagnosis of multiple sclerosis, I’ve become even more of a homebody. This is a result of realities both mental and physical.

On the physical side, there’s always some details to consider, eventualities to plan for. I try really hard to live in the now and not project into the very scary future of what this disease could mean for me but I often fail. Since my diagnosis, it seems like I’ve gotten worse physically speaking. That means that often the physical nature of my limitations directly affect my desire to get out.

My fatigue hit all-time highs to the point where it was often difficult to get out of bed to even get myself to work, let alone muster the energy to go somewhere for fun. My body felt like it didn’t want to move most of the time. The Provigil helps, for sure, but there are still those days when my legs feel so heavy that basic movement is a huge effort. My sleep requirements have always been high. I mean, I flat out love my bed and that has nothing to do with MS. But the sleep my body needs now is exactly that – it’s a need. A requirement necessary for basic functioning. I used to stay up really late reading because I didn’t want to put my book down, but doing that now means I lose an entire day to sleep. I need at least ten hours. That’s just a fact.

The wonky nature of my legs is another physical fact that often determines what I do and don’t do. I think about situations in terms of the physical toll I may experience and whether or not I feel I can withstand that toll on that particular day. The specifics of this evaluation look something like this:

  • How far will I have to walk from my car to my location?
  • Will there be a place for me to sit when my legs get tired?
  • Will it be hot where I plan to go…will I get overheated by the walk or by the environment where I will be? Will I be able to cool off easily, avoid the sun, stay out of the heat?
  • How close will I be to a bathroom? Will it take a walk to get there?

Then the inevitable question, will I be able to make an escape when I simply crap out? Because I will crap out. It’s just a matter of when. So because of all of that, and my inner introvert often winning out, I stay home a lot more now than I used to.

I love being home! I really do. But this often leads me to spending more than my share of time on social media.

It’s just always there ready to give you something to look at, read or react to when there’s not much else going on. It’s so always there that I’ve become somewhat addicted to it. It makes me feel connected to the world outside without requiring me to develop the usual check list of preparations. It’s easy to dip in and dip out again. I do it almost constantly. I check Facebook while watching TV, talking on the phone, going to the bathroom, lying in  bed. I check social media before going to bed at night and first thing when I wake up in the morning. It’s gotten completely out of hand. I call it the social media loop…check Facebook…Check Instagram…Check email…Check Facebook again…and so on and so on.

It was getting so bad that I considered giving it up entirely. Cheryl, my therapist, thinks that is far too drastic. She thinks giving up social media would make me feel completely isolated and she’s probably right. I appreciate and value the connections I’ve made online. I have friends, real friends that I’ve spent time with in the real world, who I met on social media.

On really bad days, the support I get from the many who’ve been there for me when I let it all out on Facebook can be the thing that propels me out of my funk and into a more productive way of thinking.  But lately? It’s taking up too much of my brain space. Social media has become a crutch for me. Almost an obsession. I gaze at the lives of my many “friends” and their social goings on and travels and activities and I feel sad. I feel like my life is too small. Too internal. Too quiet.

I look at your pictures of your fun nights out and your OOTD and YOLO posts and I feel myself and my life has somehow become less than enough. I used to get such a charge from seeing and being seen. Now it just feels like a lot of work. But when I see you do it? I feel like I’ve given up or lost the parts of my life that used to give me joy.

But the truth is? I’ve always loved being at home. I’ve always loved the rain. I’ve never been outdoorsy. I used to jokingly refer to myself as “indoorsy” when people asked me to describe myself. I have always loved to read and watch good TV. I love to write in my journal and spend hours doing absolutely nothing. This has always made me feel content. Now that it feels like it’s required, as a result of my physical limitations, I somehow think I’m supposed to be an outdoorsy, world traveler who goes to black tie social events each night and occasionally goes clubbing to mix things up.

It’s literally insane. I would hate doing all of those things. But there you have it.

I love being in touch with people. I love the ease of social media for keeping in touch with people from all parts of my life. I feel like I have connections to people I would otherwise have no easy way to connect with. People who are important to me. Friends from my childhood. Friends from high school and college. Family I don’t get to see that often. I’ve even made new connections with people who I might never have otherwise met. These are all really good things!

But I’ve had to give myself a good, stern talking to.

Social media isn’t real. It’s the finely curated best (and sometimes worst) parts of people’s lives that come together to create a picture of something even better, and more interesting than it usually is. It’s the best of 62 selfies to find the perfect one to post (I’m totally guilty of this). It’s the perfect sunny day that looks impossibly ideal. It’s the carousing with friends that makes your life look like a sitcom or cool HBO comedy drama. It’s the once in a lifetime sunset on the Italian Riviera that looks like a picture in a picture book. It’s a series of perfect moments – or even imperfect moments that also help to round out your interesting internet persona. And that’s why I love it! And also why I hate it.

I’m rationing my social media these days. Trying to keep my head on straight. That’s hard for me under the best of circumstances but these days, when my head has become an even darker, scarier potentially dangerous place to be – these days it’s even more important. I don’t have room for beating myself up over not being fabulous enough. I don’t have the strength to try and keep up. I want to sometimes! I really, really want to. But I just can’t.

Accepting that feels like quite a step for a finely curated gal like myself.

 

 

 

 

MS might actually HAVE me, after all

Cheryl, my loyal and trusty therapist, announced today in our session that she thinks I’ve officially entered the anger phase of my MS mourning.

I laughed out loud. I’ve felt like I’ve been in the anger phase for a long time, myself, but she’s probably right. It’s pretty safe to say that I’ve been firmly in denial from the very beginning when I first heard the words, “You appear to have multiple sclerosis.”

I immediately jumped to the position I expect most of us would. “I have MS, but MS doesn’t have me!” Shaking my fist in the air and muttering, “As god is my witness!” But here’s the thing. Lately, it does feel like MS has me. It just does.

There is literally nothing about my life that hasn’t changed, not since my diagnosis, but even before that. Since those early days when I just had the horrible, nagging feeling that something was very wrong, even if I didn’t know what to name it yet, my life has been changing little by little without me even noticing it. Small adjustments at first.  Bigger ones later. I’m sure there will be bigger changes yet, to come. All of those subtle changes have added up now and the result is a life I sometimes don’t even recognize.

The ironic thing about this new life I barely recognize is that it’s also in a constant state of flux.

I never know if I feel better (or worse) because of my disease, or my treatment, or the various pharmaceuticals I take for symptom relief or if my state of mind is affecting all of the above. I’m always guessing.

Today I’m trying to decide if it was the right choice to slow down my Tysabri treatment. Tomorrow is infusion day, you see, and I won’t be in attendance. Dr. Scott, my neurologist affectionately dubbed The Great Scott (or TGS for short), decided to put me on an every-other-month schedule at my last appointment. He isn’t convinced, and neither am I, that the Tysabri is helping me much. There’s something new coming out in 2017 that he thinks will be better (and safer) for me, due to my JC positive status. So I won’t be getting infused tomorrow, I will be going to work to entertain visiting dignitaries and visit more commercial real estate instead.

Here’s the truth. Provigil makes me feel like I can keep up, but some days even that isn’t enough. I feel weak and tired today. My gut tells me I will be in bed before 8PM because I need to be in the office before 10AM and that requires a herculean effort in the morning. I feel like maybe the Tysabri was helping me more than I thought it was, but we made the decision and now I need to play it out. Am I just having a few bad days? Or is this going to just keep getting worse as the Tysabri completely disappears from my system. By November, when I go for infusion again, will I be even worse?

And in the meantime, what else is going to change?

I’ve already become almost unrecognizable to myself. Of course, you wouldn’t agree. I look the same to you. But I’m not. My clothes are simpler and much less fussy because I just want to be comfortable. My shoes aren’t even remotely like what I normally consider acceptable because it’s hard enough to walk as it is – why make it harder? I used to take a great deal of time and focus applying elaborate makeup each day because it was so much fun to me (really)…lately? I’ve been going the more basic route, if I wear makeup even at all. You might not be able to tell I’m sporting bed head but I sure can. Yesterday I went to work without a single piece of jewelry on! I’m telling you…that has never happened before.

I have my routines. My armor. My persona that I’ve cultivated over the last 49 years and I’ve come to enjoy the result. You might say, “But Beth, I want to be comfortable now too! I have changed a lot myself but just as a natural evolution of maturity and getting older and wiser!” And I would give you kudos! I really would. But I resent it.  I loved the stuff. The costume. The face I put on every day. I really loved the shoes! It’s probably not prudent to admit it, but I felt like I was enjoying who I was for the first time in such a long time. I was comfortable in this skin, imperfect as it is. All of those insignificant things, the costume and the accessories and the makeup, they were part of it! I could act like I’m much deeper and more mature than that, but I’m not. Sometimes those things got me through a day.

I know I sound like a big whining mess. Buck up! Look on the bright side. As Cheryl said today (who told me not very long ago that she, too, has MS! How is that even possible?), nothing about this doesn’t suck. Even when you try to put a positive spin on it – it doesn’t really work. You move on to acceptance because what choice do you have? Nobody wants to be the whining complainer who is pissed off about her stupid shoes!

But you know what? Right now? That’s exactly who I am. I am pissed off about all of it.

Today, I wore a new pair of shoes that were ambitious for me (crazy…compared to my former standards…but anything other than completely flat shoes have been out of the question). These shoes have a little heel but they are basically flat because of a platform. I surmised…I trip in flats! I have to walk slowly no matter what! I get tired walking in bare feet. What the hell difference could it make for those things to happen in shoes I don’t hate? Fuck it. I wore the damn shoes. I felt rebellious and defiant in my mostly-sensible shoes.

Maybe MS doesn’t have all of me yet.

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Bethydark on a sunny day

I had a rough day today, mentally speaking.

Maybe because it was Saturday. And the weather was beautiful. And I had nothing to do and nowhere to be. It kind of made me sad, to be honest. I wasn’t sure what I wanted to be doing or what I thought I should be doing. I guess when I have time on my hands and the weather is glorious it highlights all of the things I can’t do so well anymore. Like walking. Ha! But seriously. I was feeling weak today. Not tired so much – I took my Provigil and was feeling ok energy wise. But my body just wasn’t up to the energy I had. It’s hard to explain.

I ended up doing a lot. I tagged my blog (the one I finally started and got up and running on Friday night). I took 6 coats to the dry cleaners and swapped out my spring coats for my fall jackets. I laundered and put away 6 sets of sheets. And one load of towels. Well. Now that I put it in writing it feels like I did a ton. All of those things I did involved a lot of stairs from the second floor to the basement and back again. It wears me out.

Maybe I’m missing people? Or social interaction…or having plans. I’d kind of given up on things like that for awhile. I was just feeling so overwhelmed. Maintaining a thriving social life kind of got put on the back burner. Then you consider the fact that doing household chores pretty much takes most of my energy…and I find myself feeling like this disease has truly sucked the fun out of my life.

Or maybe it’s not the disease. Maybe it’s just me. I honestly don’t know anymore where the disease begins and I end or vice versa. Taking care of my house and my four unruly vomiting felines takes it out of me. Daily living kind of things require doing. There’s just always something that needs cleaning or moving or switching or maintaining. Lately I’ve been feeling like the weight of taking care of this house is taking its toll.

Or maybe I just need to get out more.

I’m just not sure anymore. I’m still in the middle of this, I suppose. The part where I’m trying to figure out where the old me and the new me converge – or who the new me actually is. I hope I like her.

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.

Remembering…me?

I had my second MRI today. It was generally uneventful.

I laid inside of that tube with a towel over my eyes listening to the crazy banging and whining and whizzing of the machine all the while singing Kelly Clarkson lyrics in my head – the noises kind of fit the beat of “Since You’ve Been Gone.” I’ve always liked that song. So it got me through without much angst or drama. I’d be a liar if I said I wasn’t freaked out wondering what new lesions may be found, because of course I am thinking about just that but I was kind of proud of myself for going alone and for making it not a big deal.

After my MRI, I went to Costco with my mom. I got my $33 Provigil (I’m still in shock and awe over this phenomena) and we looked around at all of the giant things sold at that giant ass place.

Everything sold there is too big to be stored in my house. They sell giant loaves of bread, two in a pack that would be moldy before I got through half of one.  I got myself some makeup wipes (they were pretty cheap, cheaper than Target), a giant tub of chocolate covered almonds and a matching giant tub of cashews. I also got some Halloween candy – 300 pieces and that better be enough. But I couldn’t bring myself to buy anything more because I didn’t want to have to figure out what the hell to do with it once I got home.

I’m feeling kind of low today.

I’m wondering if the up and down of when I take the Provigil and when I don’t (like today) is messing with my head a little. It’s hard for me to accept. The simple fact that if I don’t take a pill, I won’t feel like me. When I don’t take the pill I’ll feel more like this me that I’ve become over the last three years. The one who doesn’t do much. The one who gets really tired from a short trip to Costco with her mom. The one who spends Friday night laundering couch pillows that have been recently pissed upon, while watching shows on her DVR covered from head to toe in feathers from the down inserts of said pissy pillows (thanks, cats).

I feel saddened by the fact that without this drug, I don’t feel like a real person. I feel like an old, sick, decrepit person. It seems to me, at times, that over the time that it took for them to figure out what was actually wrong with me, slowly day-by-day I got used to a slower, less interesting life. I got used to burying myself in books and history. Finding connection online instead of in life. I became enthralled by television and Netflix. I got super intimate with…myself.

It’s not like I hate this new me. She feels at home in her skin most of the time. She enjoys the quiet. She likes going slowly. She enjoys exploring the insides of the latest interesting book and of her own rather dark and twisty mind. But I also miss…the me I’ve always wanted to be.

The social butterfly who wears fantastic shoes. Her makeup was always on point and she was always telling witty stories and making people laugh. She liked going out to bars and restaurants and places where people go to be social. She loved drinking wine and eating yummy food. She liked seeing new things and taking adventures – out west to Napa, or to Italy, Paris and Monaco or to St. Lucia or London on a whim. The idea of going to London on a whim now is almost laughable. First, I’d have to actually want to go and then I’d start to panic about how I’d actually make it happen physically. How far would I be able to walk before my legs crapped out? How much would I get to see before I had to suck it up and admit I was done?

My sister is out west right now with two of her kids, Lani and Rocco. The pictures look like they are having such fun! They are seeing spectacular things – like the hot air balloon festival in Albuquerque and the white sands in New Mexico. The pictures are breath taking. Tonight they are headed to the Grand Canyon. Those are things I think I would like to see. (Ever since I watched the Brady Bunch go to the Grand Canyon, I kind of assumed I would go there too.) Then I remember how big those places are and how much energy it would take to traverse the sights and how much time I’d be away (and how my whole house would be covered in cat pee when I got home) and it just all feels rather impossible. I wonder if I’d even go if I could. And that kind of makes me sad.

I want to be the person I used to be out in the world. The fashionable girl who lights up a room with conversation, who commands a room and makes people laugh. I see glimpses of that girl every now and then – but she’s so different now I barely recognize her. It’s not just the shoes that have changed to a more practical and safe height, but her style has become a lot more casual and less complicated. She wants to be comfortable more than she wants to be fabulous. I want to accept the new me. I try to revel in my quiet, literary life surrounding by fur balls. Sometimes I really do love it. I just feel like I’m in this cocoon and I’m changing…but I’m not sure what I’m changing into. I’m not sure who that will be.

I realized yesterday that I don’t even think about sex anymore. I haven’t even used my Hitachi Magic Wand in months. I guess sexy isn’t at the top of my list of key attributes right now. I used to think about sex a lot. I used to make it happen when I wanted it to happen. Now I honestly can’t even imagine doing it let alone making the effort to find someone to do it with. I don’t even do it with myself! I’m guessing that’s probably a bad sign. I’m not sure why I feel the need to label it as “bad” but there’s a voice in my head that tells me that normal women of my age and life situation – they think about sex. Or dating. Or even kissing! They seek it out. I sometimes tell myself that since I had so much sex in my 20’s and 30’s (and hell…even my early 40’s) that maybe I should give myself a break and stop worrying about not thinking so much about sex right now. But we all know I rarely give myself that kind of break.

I know I’m in the middle of this. I know I only had my second of many MRIs to come today. I know that as far as being a MS patient goes, I’m a newbie. I’m barely out of the woods. In fact, I’m living in the deep dark woods pretty much all of the time now wondering if I’m going to be rolling through these woods someday in an all-terrain wheelchair. I’m probably still mourning. Maybe it’s hard to think about sex when you’re mourning (though it wasn’t so hard for me once before!). Maybe I want to be comfortable and stable on my sensible shoes because everything in my life is so completely unstable right now.

Live in the now. Stop trying to figure it out. I tell myself this over and over again. But when the now is so slow and quiet, it can be hard to live there. It’s almost guaranteed that while you’re living inside of your head, your head is likely to go places you might not want it to go.

I think tomorrow I’m going to set an alarm and take the damn pill. Even if it’s a fake feeling, I prefer feeling like a real girl.

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.

Eff you, Charlotte Airport

Charlotte airport gets strike TWO.

I waited for 25 minutes for my wheels, until I gave up and walked. I got as far as the “assistance hub” where I saw two official looking guys in suits. They got a rather large piece of my mind. They took my info so that they could “make amends” that I have to tell you I won’t be holding my breath for.

I’m dosed, granted. I walked OK but I knew the Charlotte airport was too much walking and there was no reason to risk it. It makes me wonder…what do the people do who can’t walk even as far as I did? I mean, those people are seriously screwed. As I sat waiting, not one employee would catch my eye to tell me how much longer, probably because they knew I was screwed. Like I said, I could walk a few gates and not stumble, thanks to my magic Provigil legs, but what about old people? Or people who can’t even make it that far?

An American Airlines gate agent explained to me that because of the merger with USAirways, all of the handicapped assistance is in the process of being transitioned over to a private company for support. She said their own people are mainly losing their jobs. As a result, she explained, she had five people sitting more than an hour waiting for chairs or an electric cart for over an hour on the flight before mine. FIVE people who probably hated to ask for the help in the first place.

When people tell you that all you have to do to get help is ask or it, that is utter shite. Even when you ask for it, there’s only a 50/50 chance or less that you will actually get said help. The travel industry is failing the ADA big time.  The helpful but powerless gate agent told me to go to the Department of Transportation and file a formal complaint. She said it’s the only way to make any change.

This brings me around to politics…imagine that transition! But here’s the thing…for those people out there who firmly believe in a smaller, less intrusive federal government because they believe that private industry will do the right thing and make decisions that are in the best interests of the public – you’re high. Private industry will fuck the little guy every chance they get. Period. Without government, there is no Department of Transportation to complain to. There is no Americans with Disabilities Act. There is none of that shit.

Not to say anything of basic infrastructure we all rely on to live, but that is an entirely different rant. And I have a 4PM meeting to get to.