…and speaking of Tacos, I allowed myself to be convinced to have one and have subsequently been cursing Tijuana Flats since. In fact, I’ve felt downright awful all weekend. I think the combination of some poor diet choices, this incredible heat, and maybe just the realizations that I’m taking…like…fourteen pills (including supplements) a day has something to do with it.
I just feel so toxic.
Which is always something I’ll feel like I’m on pins and needles discussing. Because I know there are always going to be people out there who look at me and think: She purposely chooses to take drugs because she’s lazy and doesn’t want to put in the effort to better her body naturally or holistically.
But that seriously could not be any further from the truth. And I could throw in a joke here about how someone would have to be pretty damn insane to want to head to a pediatrician’s office at fourteen with screaming infants and all those germs when they could just as easily get a massage and have that solve their ills. But maybe some back story will make a little more convincing of an argument.
I grew up with a naturopath mother. The kind who always had me do acupuncture, see the chiropractor, and take some digestive enzymes before I’d actually get to see a doctor. And that was a good thing. Because lord knows what kind of flippant attitude I would have had towards pharmaceuticals if they’d been my first line of defense.
But then, I do have this base acceptance for the fact that I’m basically taking fourteen capsules of necessary poison to get through my day. Eighteen if there is pain involved. It’s something I’ve always really struggled with. At least since I got diagnosed. I’ve tried weaning off my medications so many times, but at the end of the day I keep coming back to the same conclusion: I needed them in the first place. And my body still needs them to function.
Which is not to say I won’t go the chiropractor (because I do–and it makes me feel SO much better!) Or get acupuncture (which is not my favorite thing in the world, but doesn’t hurt.) Or even march myself over to the cranio-sacral therapists if my body is that bad.
But even I look at my pillbox in the morning and think: the world must think I’m so stupid. They must read my medical files and think: how can someone be so dumb, so disconnected from their body that they need THAT MUCH intervention on a daily basis to function?
And I hear the voices of every friend, family, or physician who’s asked me, “Have you tried a gluten free diet?”
and every nutritionist who’s asked me, “But do you incorporate whole grains into your meals?”
and that’s pretty much when I remember that I’m the only person in my body–and imagine this, I’ve been here this whole time! So I know what I’ve tried and how badly/ineffectively I’ve reacted to it to end up at this treatment plan.
Life with this disease is trial and error. You try a natural path. You try a chemical path. You try a safe food. You try to “adapt” to an unsafe food. You fuck-up. You hurt. You heal. And I know I ate a taco–and I made a bad decision that I’ll probably still be kicking myself for two weeks from now–but if I had some kind of roadmap for this thing that allowed me to be safe while being daring, to be exploratory while being exclusive, to test my parameters without inflicting self-harm–I would already be doing it. You forget that there’s really nobody standing next to me when I’m making those decisions saying: PICK THE BLUE ONE, PICK THE ONE RED ONE. It’s just me making an argument for what could or couldn’t happen: You could eat that popcorn and get sick like you did two years ago–or that could have just been a fluke of sensitivity and eating a handful now will show that you can add a whole new item to your diet!
Only I can make an emotional, philosophical unraveling of the soul come from the sadness I feel after eating a taco.
R.J and I have had this conversation so many times.
Me: (While passing a Taco Bell) I really want a taco!
R.J: So let’s get a taco.
Me: You know I can’t have a taco! I’ll die.
______
Me: (While passing the Shake Shack) I really want a milkshake!
R.J: So drink a milkshake!
Me: If I have a milkshake I’ll die.
R.J: But it’ll be worth it.
Me: Not if I die before I finish drinking it, which I will.
______
Me: (While passing any pizza place) I really want a slice of pizza!
R.J: So let’s have pizza tonight.
Me: I can’t. I’ll—
R.J: Die. Yeah. I get it.
______
My diet?
The list of foods I want to eat, but know I’ll end up in excruciating, unbearable pain from grows longer every day. I want eggs. I want cream cheese. I want ice cream. But I won’t eat it.
I still get stomach pains when I think of the last time I ate a meal’s worth of danger food. It was during a GI test at an outpatient center where they wanted to see what would happen if I ate a bagel with cream cheese and two fried eggs. I, in some existential and gastrointestinal sense died. So now we know.
I still remember crawling around on my bathroom floor hysterically crying. I think that meal alone gave me PTSD.
So as much as I may crave a milkshake or hanker for a taco or covet a fried egg—I don’t do it. I’m not suicidal. My plain bagel proves it. My cheese-less garlic bread proves it. I want to live. I want to flourish.
Just as the Cosmo article was published, I was in the middle of working on a post called “Haters to the Left” which I do intend to put up, but not just now. How could I put up a negative post about one person when the response from my piece was so overwhelmingly positive and supportive? The piece so far has over 1,000 shares on Facebook and so many nice comments. I’m really glad people could relate and it was cool to see other POTS and PIDD patients coming out of the woodwork to chime in!
I’d like to thank the academy and my dog for interrupting me 48 times while trying to write that damn piece!
I’m so excited that people are reaching out and spreading awareness and you’re all gonna be so underwhelmed when you hear that my next piece is on cheap haircuts!
I also know I said I’d update about my whole randomly-falling-asleep-during-the-day thing. I had to get off the low-dose naltroxen last week. The low-dose was fine, but when we doubled the dose to see if it would clear up more of my brain fog–it just made it worse. (OR maybe it just was worse, and the LDN wasn’t making a difference.) Either way I felt like I was trying to write through a cloud of spiderwebs which kind of sucks when you’re writing long editorials all day.
Yesterday I went in to get my IV and we decided it was time for me to try the Adderall. I was a little nervous but also kind of excited. Just the idea that I could try something to give me a little more energy every day was encouraging. But when I took the pill at around noon I was already fighting to stay awake and ended up sleeping four hours in the middle of the day! That’s even worse than usual. I woke up still feeling drowsy and slept through the whole night. I can’t really make sense of it. How does one sleep through an Adderall? Isn’t that supposed to make me feel like I drank a double-shot latte rimmed with crack?
I’ve also had some nasty joint pain since last night so I’m leaving in an hour to visit my chiropractor to see if I can avoid taking an 800mg ibuprofen with my already profuse cocktail of pills for the day.
But aside from that I’ m rocking it at work, have had like 40000 ideas for the Global Genes Project that I think I’ve been spamming the entire team’s inbox and have been bouncing around from couch-to-chair-to-couch for the last hour because I just got the final word that I’ll be interviewing one of my fav MTV stars sometime this month.
I also just got our first “Congratulations on your engagement” cards in the mail, so I’m liable to start hysterical happy-crying any minute now.
Don’t bring me home any sugar cookies–I don’t think my heart can take the excitement.
I’m suddenly feeling like all of my pre-engagement creeping on The Knot and Pinterest have me vastly under prepared to be a bride. I know R.J and I won’t be getting married for a good long while–which was discussed at length prior to getting engaged. There’s really no rush so long as we both can get insurance through our parents until we’re 26. But that doesn’t mean I can’t use this valuable time to figure out how young U.S couples afford the average cost of a wedding at $25,656.
Not enough, I guess.
In other news, looks like Cosmo Online will be taking up my POTS editorial. Wahoo! I’m rewriting it entirely though because anytime I look back on something I’ve written longer than three days ago–it is horrible and I am so ashamed that I have to hide under the covers and tell Happy how I should probably just get a job in data entry.
I’m back on my racist diet, so today after getting my IV–All I really wanted was matzo ball soup and two plain bagels. So I called a local deli that I usually get that from and asked if I could get it take-out. I had maybe an hour in between my IV and my scheduled work for the Rare Project so I ordered and grabbed my purse to head out the door.
As I was leaving, I got a call back from the restaurant with the most bizarre news. They were no longer selling bagels take-out.
“What.” I said, because that wasn’t even a question.
“Well, my boss says we’re only serving the bagels in-restaurant now. We can’t offer them for take out.”
Who were these horrible people? Why were they holding my bagels hostage from me?
“What are you talking about? You’re a deli. How can you not offer me bagels?” I asked, giving R.J–who had the day off of work–eyes of extreme disappointment.
“You can still pick up the soup, we just can’t give you the bagels.”
“Look,” I said, my stomach growling, “You may just want to tell your boss that he’s about to lose an order if I can’t pick up my bagels.”
“Okay, Miss. One second.”
He put me on hold.
“What is this?” I said to R.J, “They’re a deli. A deli. You don’t withhold bagels at a deli.”
“Miss?” The guy had returned from his hold. “My boss says this time we can do it, but we can’t do it next time. It’s a new policy.”
For our sixth anniversary of dating, R.J and I decided to get away.
We thought about where to go for a long time. After all, it’s not like we go on vacation every month year.We didn’t have a lot of time to get away, and didn’t want to waste a day of flying (which would mean a day of me recovering from the terror of flying) so we decided to stay inside of Florida. Our first thought was a weekend in Miami or Palm Beach–which are about an hour outside of Boca in either direction. But then, that just didn’t seem far away enough. We wanted a destination, a real far-away adventure. So we decided on a weekend in Saint Augustine.
We left on Thursday morning with a plan to head back home on Monday afternoon. The night before we left there was a terrible storm in Boca. There was a twister in East Boca (leaving minimal damage) and some streets were even closed because of the flooding. We were relieved to think we might actually be escaping a rainy weekend for a sunnier one in North Florida. So on Thursday, we loaded ourselves, our stuff, and some snacks into my car and headed out onto I-95.
Did you remember to bring the toothpaste?
Unfortunately–that storm followed us up through all five hours of our road trip. Thankfully it was a pretty straight shot up and so long as we avoided the stray 18-wheeler leaning into our lane, it was a pretty uneventful journey. Even my motion sickness–often spurred on by long car rides wasn’t so bad after sipping a bottle of ginger ale.
We arrived at our hotel around 1:30 in the afternoon and quickly dumped all our junk in our room before heading back down to the lobby. We asked the concierge if there was a shuttle that could take us to town. Even better, she told us, there was a trolley that would come from the historic district and take us back and forth to town for just $22 for all three days of our stay!
We were psyched–right up until some rickety tram pulled up outside of the hotel with the words “WE’LL DRIVE YOU TO AN EARLY GRAVE” written on it.
Apparently the regular tour bus was out of commission and the Ghost and Gravestones tram was taking us there. It was an…interesting ride, and with the pouring rain sloshing through the open plastic sheeting onto the decrepit bench-style seats, their motto was really sinking in.
The further we drove, the more nauseated I was getting. There were no seat belts to hold us in place so R.J and I were sliding and bracing ourselves against each other. After a five hour car ride on the highway my nerves were already at their breaking point and I was itching to get on some stable and dry land.
As we drove, our driver was explaining to us how the tram system worked and how he would drop us off at a main ticket stop where we could purchase all of our tickets for attractions and for the trolley rides and then when we were ready, they could call him to bring us back to the hotel. This sounded good, but when we actually got to the ticket stand it was a whole other story.
First of all–tickets for the trams, all trams–including the shuttle to get back to the hotel–were sold in packages. No package was less than $70 (let alone the $22 our concierge had been talking about) So we were basically stranded in the ticket stand, in the pouring rain with our only way of getting home at the cost of at least a $70 tram ride.
“Well, let us think about it over lunch,” I told the cashier. “Which way are the restaurants?”
“It’s 2:30 now. The closest restaurants are at least a 20 minute walk that way and a 20 minute walk back. I don’t think you’ll have time to get there, eat and get back before the last tram service stops.”
So R.J and I stood there in the pouring rain, held at the mercy of transportation being held up for $70.
“You can go to Subway across the street–or Dunkin Doughnuts.”
Because we had just traveled 300 miles to eat at a Subway.
R.J heroically forked over the $70 and we immediately made a u-turn for the hotel where we ended up eating Stacy’s Pita Chips and bananas we’d packed for the road. After drying off, and debating, we decided to take our chances by heading back into town–this time with our own car. Because we’d forked over the $70 we were allowed into a free parking lot. We ducked into a main alley and were delighted by all the shops and themed stores. It really was a cute town–and besides the water being up to our ankles and the wind blowing our ponchos over our faces–we were having a great time. We even braved our luck at the Castillo and fought the wind to take pictures overlooking the ocean.
We had an early dinner at a place called Harry’s and watched the storm rage outside the window. Our food was delicious. R.J got hot potato salad which was like french fries in Russian dressing–yum.
The next day we decided to check out the Saint Augustine Outlets–which we heard were a great place to shop. Unfortuantely, perhaps due to the storm–or due to the fact that we were in the entirely wrong plaza (which we didn’t figure out until about twenty minutes before heading home) the outlets were completely deserted. Like not a single other soul–on a Saturday morning. Hmmm…
Weirder still, there were so many empty stores with just these fake store fronts set up advertising other stores—it was like a North Korean travel tour…
We ended up heading back to town for a bit–hoping the shops would be open despite the still howling storm.
We took a long walk and saw all of the beautiful, and somewhat creepy bed and breakfasts.
And even checked out a cute magic shop where I was easily amazed by what R.J called very obvious magic tricks.
After another great lunch–this time at Columbia’s, we headed back to the hotel to rest up before dinner. We really wanted to have a fancy dinner–one where R.J could wear his new shirt and tie, and I could wear my new white dress…where we could really have a celebratory evening. Are you catching my drift yet?
I spent two hours trying to fix my hair.
Are you catching my drift now?
So as you can imagine, I was looking hella gorgeous. And R.J had smoothed down his fro and everything. We were one stylin’ couple who were clearly going on a date with intentions. So I switched purses, fixed on my fancy flats and we started to head out the door—
–and that was when R.J’s new–shiny—and VERY LOUD cell phone started blaring the storm signal.
For those of you unfamiliar with the feeling of your heart icing over, it feels a little like this sound:
We stopped, turned and flipped on the weather channel, resting our fancy butts on the hotel bed and staring down at this:
“What now?” R.J asked.
“Well, I’m not driving in this weather.” I said, because I have new and terrible fear of being killed by tornadoes.
“Is the storm even near us?”
“I don’t know where we are.” I said, trying to recognize any location on the bright red map. “Are we in St. John’s County? We’re in the middle of farmland though! Isn’t that were tornadoes usually hit?”
“I don’t think it’s a big deal,” R.J said, but when the lightning cracked outside our window and the rain started falling in dense white sheets, he did look a little nervous.
Our reservation was coming and clearly going and we were still glued to the TV like–this isn’t actually happening. We’re not actually trapped in the hotel room on what is supposed to be the most romantic night of our lives.
I’ll let R.J tell the story from here:
“There was an immediate sense of frustration–then acceptance–and then recognition that this is just the way our lives have always worked–and any less than a TORNADO ruining our first vacation together would be unacceptable. So that’s when I decided that the most appropriate thing to do would be to order Chinese food and pizza and to watch a move.
So that’s what we did. We ordered food, watched a movie–and at that point, that’s when I felt like–hell, if you could say yes after all of this–the flood, and the storm, and the motion sickness and the whole town shutting down—if you could say yes after all of this–I’d know you were ready. After everything that got thrown at us–I didn’t think we were going to have any problems.”
So that’s when he did it. He asked me to stand up and I muted the TV. He got down on one knee and pulled the box out from behind his back and asked if I would marry him.
And I’ll just say that he’s lucky I didn’t break his face with how emphatically I said yes.
Needless to say, we weren’t swept away by a tornado. We did however order about ten pounds of take-out and had a picnic while watching Twelve Monkeys on Netflix.
Now who’s ready for 400 blog posts on how to plan a wedding with Rare Disease and Chronic Illness!?
Happy to report that the low-dose naltroxen made a difference! I’m still having my “lights out” moments, still have a bit of brain fog, and I’m still needing to nap during the day. However, I don’t need to nap ALL day, have less brain fog, and was even able to go to the gym yesterday (which I’m paying for tenfold today.
I actually was able to go to the gym in the afternoon–which I never do–for two reasons.
1) I never have energy after 4:00 PM.
2) That’s when R.J goes to the gym and I don’t want to be associated with him.
This is, obviously, not because I’m embarrassed by him, but because I assume that people look at R.j and think–damn, that is one muscle-y dude. I bet his girlfriend must be fit too–like so fit–they probably spend all day here just looking at their incredible guns.
Which we all know is the furthest thing from the truth. Like the truth is Oklahoma and this is in Taiwan.
I mean, this is a guy who works out for two hours every day. This is a guy whose idea of a warm-up is running three miles. But yesterday I decided to bite the bullet and join him. I hadn’t been to the gym in a week, and our gym is under construction so they had moved around all the machines. I spent the first ten minutes looking for the hand-weights because all of the treadmills were taken. And then I spent the next four minutes being sad because I realized that I couldn’t do the eight pound weights and had to downgrade back to the five pound weights. Which would not be happening if I could just go to the gym CONSECUTIVELY. I got over it. And lifted my weights. And moved on to the treadmill.
The gym is packed from 5:30-7:00PM. I guess everyone comes over after work, which blows my mind–that people have energy after work. Are all people like this? Do all people work eight hours and then feel like running a few miles?
I got on the treadmill and set it to a 3.7, speed-walking. The guy next to me was going at like a 9 and was –and I kid you not–talking to himself about how awesome he was. At least, that’s totally the vibe I got but his comments were mostly in Spanish with a few “WORK IT”‘s thrown in.
The guy on the other side of me was going at an equal speed while punching the air.
I felt really boring so I kicked it up a notch by multi-tasking and checking my Gmail.
When the Latin conversationalist got off his machine (supposedly to pat his own back while doing push-ups) I switched to the recumbent bike in the back row.
Since there were no mirrors to obsess about my own ass in, I found myself staring at the girl in front of me on the elliptical. And I was trying not to be a creeper–but do you ever have those moments when there’s a girl in yoga pants and she actually looks totally fit and AMAZING and you spend twenty minutes just staring at her butt thinking, I know my ass doesn’t look like that in yoga pants! Does she do this EVERY DAY? Could my butt looked like that if I came here every day? I need to come here every day. I need to buy more yoga pants.
Then I continued my quasi-lesbian creep session by turning my attention to a group of women doing some kind of cross-fit class in the corner and thinking: I could do that. At least for about ten minutes I could do that.
And I be like….
I got really inspired going to the gym that day. I was like, I could do more push-ups. I could keep lifting weights until I hit the 15lb weights. I even managed to do 20 crunches!
Then I went home and almost fell asleep in my bathtub.
Continuing on… Today my fatigue got progressively worse. Blood pressure sank. Pulse raced. Blacked out every time I stood up. I had my mom take me to Dr. Santa Maria to get checked out. We’ve been talking about changing my beta blocker for a while now (I often have these periods where they completely lose their effectiveness) and the side-effects from them aren’t exactly a party either. But now–a week before our vacation–is no time to mess with my heart medication.
Because messing with my heart medication could cause a myriad of crap including: dizziness, vertigo, low blood pressure, tachycardia, fatigue, nausea…
However NOT doing anything about my beta blocker could cause: dizziness, vertigo, low blood pressure, tachycardia, fatigue, nausea…
So. There’s that.
After some theorizing, comparing and contrasting–thinking back on what has and totally hasn’t worked–we came to the topic of narcolepsy. I mean, it’s pretty familiar to what’s happening with me. I get incredibly fatigued with almost no notice and have to fall asleep wherever I am, immediately.
I know I’m reusing this one, but god damn–it just applies, you know?
So we started discussing some narcolepsy medication like Provigil. It might be something I try when I get back from St. Augustine. For now we’re trying something else. Low-dose…something. Crap, I’m sorry this doesn’t help anyone but have I mentioned I’ve got a little bit of brain fog going on? It has to be made at a compounding pharmacy so I won’t be able to start it until tomorrow night. But that’s okay, all I have to do is write two blogs, about 50 follow up emails, prepare interview questions for that celeb mom, and then find a way up my staircase without dying.
So that should be doable.
Or I could just fall asleep right here on the couch.
The most emo looking selfie I’ve taken since 2005.
So this is what my day is like today: I wake up and I know that no matter what I do today—no matter what I accomplish, or how grand my goals are—I have to do one thing.
I need to buy dog food.
And maybe some bread.
And after a good deep-breathing session, definitely some air fresheners.
But I’m having a rough week. My energy is just non-existent and so I know I’ve got to really budget my spoons today—which is okay, because I have a pretty low-impact work day with really only one or two clients and no meetings that I have to pretend to be awake for.
So I get dressed, I do my hair, I fold the laundry and I sit on the top stairs for ten minutes before finally summoning the energy to go down them. I eat a banana because there is nothing else edible in my kitchen besides cotton candy. I feed Happy whatever dregs of kibble are left in the container.
And then I get in my car and I go to the pet store and I picked the only flavor of the only brand of food that I can get him to eat without getting sick and I lug it across the store, to the counter and I try to exert as little energy as possible while swiping my credit card through the machine. Then I throw the food in my trunk and settle into my car again—luxuriating in how nice it is to not move for a few minutes.
Then I drive to the other end of the plaza to Publix.
And I get out and I’m already practically sweating as I walk through the aisles getting Pillsbury cinnamon rolls (that R.J and I are now obsessed with cooking perfectly) and more powerade (because you can’t ever have enough Powerade) and dishwasher detergent.
And then I wait an endless seven minutes for the woman in front of me in line to load and check out her stuff before I start loading mine. And by the time I get back in the car I have to sit and rest my head on the steering wheel and try to focus my eyes into seeing only one set of keys instead of three.
By 11:45—I am done. I’m able to sit very still on the couch the rest of the day, typing and blogging and editing and taking calls. But I’m bleary eyed and functioning at about a 4%.
During that time I secured an interview with a major celebrity mom, wrote a proposal for a new client, edited, added and even wrote some new blog posts for Global Genes and outlined a press release that was insanely boring.
And none of that bothered me—I mean the functioning at 4% thing because most days I’m there by 5:00 and that’s that.
It wasn’t really until 5:00 that I actually started feeling depressed about my low energy level. I’d been doing so well with the gym and was finally starting to see some progress-but this week I haven’t been able to go even once. And all day I was wrestling with myself saying
I’ll go to the gym and just do the treadmill for fifteen minutes, the hand weights and the crunches bar.
I’ll go the gym and just do the hand weights and the crunches bar.
I’ll go to the gym and just do the crunches bar.
And then I was sitting on my living room floor between my coffee table and my loveseat trying to do crunches before I realized that if I even did one—I would be stuck on the floor for an hour, with no energy to get myself back up.
And so while R.J went to the gym as he does every day after working a 9-5 job with a little college bio chemistry lab thrown in—I took a half an hour to gather myself and approach the staircase and then sat in my bathtub, trying to remember what limbs I’d already washed.
Then there’s nothing left to feel but guilty that I’m not a more energetic worker or girlfriend or pet owner. That my stomach will remain flabby because I can’t get to the gym to do the fucking crunches bar and that there’s no more body wash because I couldn’t make it to Harmon (at Bed Bath and Beyond in West Boca where I buy all of my bath stuff for cheap) because it was too far away, because I didn’t trust myself in this flimsy state to drive across town.
Guilty, that I’ll have to hand R.J a shopping list instead of going out to dinner with him. Guilty, because by the time he gets home–I’ll already be in my pajamas half-asleep in our bed.
…and speaking of Tacos, I allowed myself to be convinced to have one and have subsequently been cursing Tijuana Flats since. In fact, I’ve felt downright awful all weekend. I think the combination of some poor diet choices, this incredible heat, and maybe just the realizations that I’m taking…like…fourteen pills (including supplements) a day has something to do with it.
