What if it were enough?

I know there are several very real and pretty complicated barriers to overcome if I want to accomplish my ‘dreams.’ Just as many, if not more, are perceived rather than real boundaries and I’ve certainly let fear of failure and “how-it-should-go” stall me. And, I obviously can get stuck in a pity party.
There’s also the fact that my dreams are blurry and while I’ve been trying to find a road-map (of any sort, anywhere, something!) nothing quite fits. Is that scary? YES.
I’d be doing work I enjoy and where I can put my health first. I’d show others that you can be successful AND manage narcolepsy AND not hide it, but embrace listening to what your body tells you. I’d help others with something practical or empowering and then maintain those relationships. I learning and loving – through travel, through culture, nature, activities, strangers and friends. At the same time, I want to be more present and less concerned about checking things off. Horseback riding was the first thing I shifted from a goal-oriented activity to enjoying for its own sake after a whole mess of experiences, and still amazes and excites me every time I go to the stable.
If I stop for a second though, technically, I’m doing a lot of this already. I want to say “BUT IT’S NOT ENOUGH”, but why? Why is it not enough?
Because I say it’s not, think it’s not, assume it’s not. Therefore, it IS not. And it will stay that way as long as I want it to. I’ve already been through the phase where I secretly wanted everyone’s pity, but pretended like I didn’t. I pretended to be fine with my life circumstances when I was so very not. Then I dropped the facade and just openly complained about the impossibility of it all (still do this some…). But what if I could truly just be ok with where I’m at? There are some real benefits. I’m getting to ride on a regular basis – last week I jumped cross country for the first time and I can’t even describe how insanely happy that made me. I actually had three lessons last week! I rode in a show jumping clinic with Kira Conner, a CIC** eventer out of North Carolina, on a cheeky pony that has scope for daaays. Then I did a little dressage test with the OTTB mare I later rode on Friday for xc and she was a star for that as well.
Did I mention I’m back at the stable where I first sat on a horse 15 years ago, all of 10 minutes from my house? And my instructor is someone I rode with in 4th grade? It’s a small world folks.
I’m making monies working at an independent health foods store, and I get to help people everyday. Of course, there are the people who come in two minutes before closing, or who call the store and launch into a diatribe about their bowel movements…  but there’s also the little girl who’s using some of our loose herbs in the rice bags she’s selling to offset the costs of a school exchange trip to Japan (!!) in October. And the vegan or gluten free customers who can’t find a certain grocery item anywhere else. And the regulars who, as soon as they walk in, you can tell them whether we have their supplements in. Or passers-through who just have incredible life stories and they happen to share a snippet with you.
Then there’s the fact that I kinda-sorta have a dog. Well the benefits of one at the moment, without the responsibility or costs. I walk/run with her most mornings, and as a Husky, she has been thoroughly enjoying the recent temperature drop we’re having in the Midwest. One of the things I love about it is that it gets me moving and outside first thing. There’s still dew on the lawns of my tree-lined neighborhood and the sun makes us squint and warms my skin when we’re walking back.  She’s taken to looking for me and will lay at the end of her house keeping an eye on either my or the bathroom window. While I know her enthusiasm is more for the walk than for me, I still can’t help but laugh and get more excited as she spins in circles (and still occasionally tries to jump on me… sigh… work in progress) and starts whimpering when she feels I’m not moving fast enough.
There’s also all the time I’ve had to learn more about myself; through therapy, through researching narcolepsy, keeping up with current events (although those can be just as depressing as my own vicious little circles…), learning more about the Myers Briggs system, the Enneagram, Spiral Dynamics and other systems. I’m figuring out what my habits are – beneficial and not-so-helpful. I’m working on my self-esteem, becoming more involved with my community, reading books, going through all of accumulated stuff from over the years.

I’m not doing so bad anymore.

Even that is scary to admit, because I think I assume by naming that, I can’t have any more bad days. Or that stating that will call forth more shit. But I’m thinking too far into the future again – something I am incredibly good at, for better and worse. Right now, I am well. I am content. I’m still keeping an eye out for the proverbial Next Opportunity, but I don’t need to go blindly chasing after it. I’ve started reading Sheryl Sandberg’s Lean In, and just read the part about mentors, wherein countless young women will explicitly ask (sometimes) random people “will you be my mentor?”

Now, I want a mentor as much as the next person. I’ve never asked someone if they would be/are my mentor, but I’ve done it with opportunities: I will literally ask myself if this is my next big thing. Nine times out of ten, when I’ve had to ask that, I’m trying to make it something it’s probably not. The most influential opportunities/decisions I’ve had, I didn’t need to ask. I either knew it was, or went in with no expectations. To be clear, that’s not lowered expectations, but none, and it’s helped create some of my best experiences, or ‘lead-in’ opportunities because whatever it is, is enough. Point being, I know how to just be and ‘catch’ big possibilities that come near me with forcing it, but doing that on a daily basis is more challenging. I’m making a concerted effort because where I’m at and who I am right now must be enough, otherwise I’ll spend more time in the mindset of my last several posts here, which only creates more of the same.

Here’s to succeeding, surely failing, and then succeeding again at being enough.


This Twisted Web

abstractish.jpgAnother piece of ‘art’ courtesy of yours truly.

Let’s set the stage. I’ve currently got over $60,000 of student debt to pay back before I die. The reasons for that amount are their own story. Had I got into nursing school my freshman year of college, or applied to OT school after my junior year (and made it in, and graduated, and then got a job), I might have more or less loans, but I’d likely be able to pay them off in due time. If I were working as a full-time recreation therapist, having not gone to OT school, the progress would be a bit slower, but still achievable.

Instead of getting references and GRE scores near the end of my junior year, I was served with a incurable chronic illness diagnosis and some medication Rx’s.

And now, in spite of some more Rxs’, I can only work part-time. I can’t do that as a recreation therapist – if I end up making too much I can say goodbye to my Medicaid health coverage, which is enabling me to work in the first place. However, I’m also not making enough to comfortably take on all of my student loans, and this is while living at home.

How am I expected to escape this web? Watching the progress of the latest healthcare massacre bill, I’ve nervous. What’s going to happen to me? Maybe I won’t lose my healthcare immediately, but what about a few years down the road? I still won’t be working full-time as far as I know, so I won’t be able to get employer insurance. And without those essential medications, I regress. I can’t concentrate or remember things, and then it becomes difficult to stay awake. Not just difficult, impossible. I remember falling asleep while standing up, during conversations, dazedly walking from here to there and not remembering how that happened.

I remember desperately running stairs, pinching and scratching myself, eating or drinking, anything to stay awake. And usually failing; unable to concentrate because everything about me is just.so.tired. and then getting to the point where cataplexy is inevitable. Not feeling like anyone believed me, and questioning whether I was, in fact, making it either worse than it was or making something out of nothing. The depression that whispers at first and sounds inviting, but only wraps you in a cold blanket of self-loathing or numbness.

I know I’ve written this all before, likely multiple times, but I think it’s because I’m still trying to make sense of it. Myself had no idea what was going on and truly believed I was causing my own problems. I coped in every way I could possibly find, and a lot of those were not healthy. I try to revisit this time period, to learn from it, and find that it’s hard – I cannot stay long because it feels suffocating, overwhelmingly sad and dire. I’ve obviously got some processing to do, but I’ve come so far in the last few months. I can’t lose that, whether it’s to my loans or job or insurance.

Reality may hit sooner than I’d like. Here in a little over a year, this unicorn of a job that was literally placed in my lap, with an amazingly compassionate manager could be gone. With an aging owner in another state, this local health foods store has been picked apart by large chain competition also has an expensive lease that will be counterproductive to renew. What then? Grad school, to do what, escape? Or pile on more loans? Start my own business, but with what saved up?

I’d love to get out of the web, but with no ground, branches, or anything in site, I don’t know which way to jump. If it were just me I had to worry about, it might (or might not) be easier, but my jump will inevitably create ripples or waves for others. Dwelling on it doesn’t help me, as I’ve learned the hard way, but I think acknowledging and giving it a voice on my own terms does.

Realizing just how out of shape you are

Back when I was actually fit, hello 2010. Of note: pointing lady who I’d like to think was totally amazed by me (but probably pointing at her child), and Hershey-shirt guy, which just seems ironically fitting.

Metaphor of the day: fitness.

I did some math and for the past two (business, because nobody’s open on the weekend) weeks, I’ve been on the phone for an average of 40 minutes a day trying to get that damn medicine I spoke of in my last post. Probably longer since I’m not including the random phone calls I took on my home phone or the calls made earlier in the month of November.

I spoke with state offices, local offices, several doctors offices, a random specialty pharmacy in Michigan, my own specialty pharmacy, my insurance, and my insurance’s pharmacy benefit manager (which I had no idea was a thing before all of this).

Also, I now know over a dozen people among these entities by name, and I’m sure they know me as well. I’d like to think I was polite throughout this whole thing. Persistent and pestering, completely, but polite (and towards the end, slightly pitiful and a bit dejected – but when you constantly inform me it’s going to be “another 24 to 48 hours” for minor info verifications, I have no regrets for inducing some minor guilt).

My new best friend turned out to be “Tim” from my insurance’s pharmacy benefit manager (PBM) on Thursday night. As I said, I had never heard of a PBM prior to this whole mess, but positive, I know more about our shit-tastic healthcare system?

Anyways, I caught Tim twenty minutes before he was supposed to leave work (sorry) and spent a solid half hour on the phone with him as he set up a three-way call with the pharmacy and proved that this whole comedy of errors was on said pharmacy’s end (which took about 22 of the 30 minutes, plus multiple holds, me nodding off, some jokes from Tim, and crappy elevator music).

Eventually: “OK, so it actually was something we had in our system.” *facepalm*

Pharmacy then launches into setting up my order, but forgets to disconnect Tim first, who has done his part and I’m 100% sure does not care to be a part of this, but if he hangs up, there goes my order (el oh el). I apologized after the pharmacy hung up that he got stuck with that, but he said it was worth it and I proceeded to thank him more profusely (going to be sending a note of some sort to this place as well) than may have been necessary. Lastly, I’m not positive his name was Tim… I’d been without my meds for a full week at this point, and since I only spoke with him once, instead of the 5 or 6 times I had with David, Sherry, LaToya (sp?), Jenny, and whoever else, I feel this is forgivable. Sorry again Tim/Tom(?)/Jim(?)/Christopher(?).

After over 6 broken hours on the phone this past two weeks, and threats from my mom to call any of the places I listed above to literally just yell at them, my medicine arrived yesterday.

So what’s fitness have to do with the diatribe above?

I slept heavenly last night. It was fabulous, rejuvenating, restful – just what I needed.

And I feel like absolute shit this morning.

Because I (again) know how tired I am. If I haven’t run/worked out in a while, and I just wing a 40 minute workout or 3 – 4 mile run, it might feel good at the moment, but later that day or the next, reality will very quickly set in and I will not want to do anything physical for a week.

This is the same thing; I have to get my sleep muscles back. It may have been less than 10 days, but if you were significantly overweight and had been exercising/eating right the past 6 months, you might have only lost 20-30 pounds. You start feeling better, but stop for two weeks and it’s just as difficult starting back as it was the first time. Give it a few days and it’ll get better though – you’ll remember, and you’ll keep going.

And that’s where I’m at. I may be physically exhausted, uncoordinated and cognitively slower than normal, but I am happy. Content in my fatigue for the time being, because as long as I put the time in, my body will remember here in a few days, and I’ll be ready for the next thing.

When life gets tough…

This is the first thing I’m doing this morning. If I don’t write now, I won’t. Life is indeed tough right now. It’s funny.

I said, way back when, that I didn’t know what this little project would turn into. Now my name’s on it, so I can run but I can’t hide.

I started this fancy new medication back at the beginning of June for my dear narcolepsy, and it’s taken the majority of the past 6 months for me to start feeling a difference. June, July, August, most of September, less of October, and parts of November (when I was sick, ugh) I hovered a few ticks above and below where I’ve been for approximately the last three/four years. I knew I had to be patient; while I didn’t physically feel all that different for a long time, I was much more aware of it. Prior, my focus was always school, family, volunteering, clubs, sorority, group projects, friends, jobs, preparing for grad school. This time, there were barely any other distractions (besides the ones in my head), so when I started to feel a difference, I knew it wasn’t just me rushing to make a burst of energy that I’d regret later.

I’d wake up and feel like I’d actually had a night of sleep and could take on the day – I started planning and prepping for the future.

I’m learning that the future isn’t ready for me yet though, because if I’m not taking care of the present, the past will just keep repeating itself.

Case in point: that fancy medication I mentioned? I haven’t had it for a week now, due to silly regulations, fine-print and general lack of urgency in our healthcare system. And when I say fancy, I mean extremely expensive and difficult to obtain. Sadly, no doctor is going to have any samples of this chilling in their office, and neither will any U.S. pharmacy, save for the one holding my prescription hostage (kidding… kind of). Considering I’ve spent about an hour on the phone every (business) day for the past week pestering various entities, I don’t think I’m the only one ready to have my medication again.

When you have narcolepsy, you brain has essentially forgotten how to “deep-sleep.” This is not exactly the same as REM sleep – which seems to be the coveted stage among the public. If you aren’t dreaming, you aren’t getting good sleep, right?

False, for the most part. Yes, you need REM for processing information from the day, but if your body isn’t restoring itself with some dead-to-the-world sleep, it doesn’t matter how much information you’ve got in your head – you won’t be able to use it (alternatively, if you are getting the best sleep on the earth but have no processing of information, you aren’t going to be all that useful). I have no trouble dreaming. In fact, that’s what a majority of my time spent sleeping is. I also have the oh so awesome ability to dream while awake, which sounds cool when you say it like that, but it could actually be that I’m hallucinating. Ya know, the same thing we judge people with schizophrenia for?

In fact, I dream so much, I have memories of my dreams. I usually remember anywhere from 2 – 4 dreams each night, in explicit detail. And not just for a few minutes after I wake up; bits of my dreams will pop into my head throughout the day, not just from the previous night, but from several nights ago, or several weeks ago. Or longer. Since starting this paragraph, bits of five different dreams have popped into my head, that I had from between 1 and 10ish years ago. I can’t recall them on the spot, and have since learned to not try.  Sometimes my dreams mesh with each other, or when I’m in one dream I’ll be reminded of an event in another dream and they start running together.Then those start running into reality… Coupled with the fact that language becomes harder. I mean, it’s taken me three days to finally get this coherent. It’s not that I can’t speak or anything, but I have to put a conscious effort into responding to people – think about what they’ve said and then what I’m saying. Usually it just means my sentences are slow with a bunch of pauses; sometimes I have the thought and after a few words the other end of the sentence flies out of my head.

If you had seen me, for instance, 10 days ago when I took my sister back to college after Thanksgiving break, and compared it to now, I’m like two different people. That’s how quickly I’ve been slipping back to where I was before starting that medication. The medication that’s taken 6 months of discipline and lifestyle changes to get me to where I’ve been, suddenly isn’t available. I could make a 4-hour-round-trip driving, run a few times a week, interview for a job, see my friends or even leave the house more than once a week. Sure, this came with sacrifices, including:

  • pretty much can’t drink anymore
  • have to be aware of when I eat
  • have lost a significant amount of weight
  • still need a nap almost every day
  • obsessively organize exact time-tables if I’m staying anywhere overnight or have commitments before noon

But I couldn’t care less. I have energy! I’m AWAKE! I can DO THINGS! It’s been amazing!

key_drawing drawing by yours truly to break up the wall of text

I wish it were as simple as finding a key in front of me to unlock this mess, but it is not. It never is. I don’t want anyone to pity me with writing this – it sucks. I’m frustrated, angry and would love nothing more than to figure out how to prevent lapses of very necessary medications, or how to make coping with situations like this more accessible. And to also get my meds.

I’ve already outlined the situation to a research survey I’m participating in (which conveniently contacted me this week for an update) – I know I’m not the only one who has dealt with this. But I’m going to try and find more platforms to bring attention to this problem, because I (as far as I am aware) completed all steps on my end of this ordeal in a timely manner, beginning in October. I prepared ahead, then promptly completed other paperwork, and still I am told that I need to do x, y, and z to fix a systemic issue. Ping-ponged back and forth between pharmacies, insurance agencies, doctors offices,  and call centers as both the middle man and the customer/receiver of care.

This is tough, yes, but I can handle it. I survived 8 years of high school and college like this. Writing about it gives me a voice and strength – I’d suggest it to anyone in their own tough spot. If I can write 1,100 words running on the equivalent of 2 hours of sleep for many other people, you can objectively complain as well (please know what you’re talking about though, or else research it). Along with that, writing gives me confidence, which besides energy, is something I will always be happy to have more of.