Ocean – FibroM.E.-Awesome

If you’re like me, you’ve never heard of a place called Fisher Island. That was true until last January, when my mom found a CFIDS specialist with a clinic in Miami, and my brother happened to be engaged to someone who was from there. Without ever having met my mom or me, the soon-to-be in-laws invited us to stay with them when we came to the clinic for the first time. We would soon learn that they didn’t live in Miami exactly, they lived on Fisher Island; a private, man-made island only accessible by ferry or boat once your name has been added to a list and cleared by the guard. It’s like an exclusive night club but bigger and islandier and your money’s no good here. You buy everything through an account number. Your cash might as well be monopoly money.

It’s a real testament to my brother’s future in-laws that we were welcomed with such open arms. We could have been a bunch of crazies for all they knew. Hadn’t they met my brother? It was pretty immediately a Mi Casa Su Casa situation, accept it was more like My Island Your Island. It is exquisitely clean, beautiful and pristine here. There are pools galore though I never see anybody swimming in them. There is a private beach with a restaurant a few feet away. Theoretically you could effectively choose your own sushi menu right out of the ocean. That tuna there! I want that one! It’s something like Disney World meets the South of France. I’ve never seen or experienced anything like it. Whatever it is, of all the places to be sick, this one ranks in my top 3.

Before my first trip out here in 2011, I had spent most of the month of January in a horizontal position at my mom’s house. I was horribly depressed. I was watching everything familiar to me, all the things I defined myself by, slip slowly away with my health. It wasn’t easy watching or letting any of those things go. But I remember feeling the tiniest bit hopeful when my brother Nick called me the night before I was due to depart. “Dude are you ready for Miami?!” Sometimes even hearing the energy in someone elses voice could exhaust me in its own way. I groaned and said something about needing to pack but not having the energy to do the laundry. I remember he was so cheerful and said “All you need is a bathing suit. There’s a lot of sitting around and doing nothing on Fisher Island.” I closed my eyes and let those words hang in the air. “Sounds perfect.”

As promised, we were welcomed with enthusiasm as soon as the ferry docked. I remember entering their home and feeling like Little Orphan Annie entering Daddy Warbucks house–which is funny because Estee’s dad slightly resembles Daddy Warbucks. Every room was beautiful and had what I consider to be the most important detail in any room; large and bright windows–most with a view of the ocean. I suddenly felt really lucky to exist, and that glimmer of hope I had on the phone with Nick came back as I hugged the new members of our family and they insisted we eat dinner even though it was past 10. I remember my doctor’s appointment wasn’t until two days after we arrived, and thank God it wasn’t because most of the next day was spent in bed with a killer migraine and that ever so seductive hit-by-a-truck feeling. The only difference was, this time I woke up in a beautiful room with a breathtaking view. And to some extent, that did make a difference. It at least softened the blow of it all. I remember taking migraine medicine and going back to sleep. And when I did, something happened something that continues to happen. I fell asleep but could hear real life happening outside the door. I would try to yell or move to wake up but felt paralyzed and voiceless. This happens to me often when I take naps and I don’t know if it’s a part of the illness or something separate entirely, but it is unsettling. I finally escaped dream world to find that Nick and Estee brought lunch into my room on a tray and sat with me while I ate. Looking back on that time now, I can’t believe what a fog it was and how bad I felt. I remember Nick trying to convince me to read the book “Freedom” by Jonathan Franzen but any time I would try to begin reading, the words would fall out of chronological order and I’d have to keep re-reading them, or I’d start to feel car sick and put it down after just a few sentences. (Luckily that symptom has mostly passed and 2012 has been filled with books!) I went to bed that night wondering what Dr. Klimas would be like. I prayed hard for two things. I prayed that we would get answers, (real answers) and I prayed that I wouldn’t find out I was crazy. By that time, I really started to question my sanity. If enough people look at you sceptically, express disbelief, or tell you you’re experiencing something psychosomatic and not actual illness, you’re going to start to question yourself, no matter how bad you feel.

To make a long story short, my prayers seemed to have been heard. For one thing, only after Dr. Klimas ran extensive tests and blood work (my initial visit at the clinic lasted seven hours) did we finally get some answers that made sense. Finally, it was explained why I always felt like I was about to faint any time I stood up or any time I had to stay standing. I had Postural Orthostatic Hypotension due to low blood volume. This diagnosis was made in under 30 minutes using a tilt-table test. (You can request this from your doctor.) The best part is, it’s totally fixable. There’s a word we love. I take atenolol in the morning and try to consume 12 ounces of fluid containing electrolytes. Atenolol prevents your heart from jumping up to 140 bpm when standing upright and controls the severe fluctuation of blood pressure. This is what I mean about answers. When these symptoms were told to one of my other doctors he told me to drink more water. She also explained how the chronic migraines are typically a result of brain inflammation (a primary condition of CFS) and how dehydration is one of the biggest triggers for migraines. (And also that prescription migraine medicine tends to dehydrate you) So especially on travel days, you should double your liquids. And you can’t just drink water. You need electrolytes. Probably the biggest diagnosis that came from that first round of tests was news that I had Lyme Disease and we would start aggressive antibiotics to get it under control. But beyond the interview, the tests, the drawing of blood, the explanations in scientific and layman’s terms, stands out one particular moment between Dr. Klimas and me. She had just finished drawing blood when I admitted to her that I had been really worried that I was going to come to the clinic and be told that I was crazy. Then we both kind of laughed and she told me that in all her time working with this illness, there has been one patient who was certifiably crazy, and that was an extreme case. “People who come here aren’t crazy, they mostly just want their lives back.” I exhaled. Finally. Validation. I had never wanted to hug a doctor so much in my life.

I’m going back to Dr. Klimas on Friday, and in the meantime am enjoying Fisher Island with family and as always, working on staying present. You know what helps me stay present? Views like this:

And golf carts like this…

And this…

And babies that pose like this…

And smile like this…

All of those things help, at least a little. I’ll report on the doctors visit next. Until then…

Health, Happiness, and Cadillac Golf Carts.

I’ve been trying to put my finger on what makes California so…well, I guess I’m still trying to put my finger on it, so I’ll begin with a photo. The other day I was driving my sisters Gun-metal Grey Prius–which starts by pushing a button and appears to run off rubber bands–when I took a left turn and saw “THE HILL” to my right. I will randomly pass THE HILL while battling car sickness from the backseat or talking on my cell phone so I’ve never been able to capture a photo of it. But this time, I was all alone. I wasn’t on my cell phone, and we all know I don’t have a real job so I have ample time to pull over and sneak through bushes to take pictures of things that I find noteworthy. THE HILL seems to embody almost everything I feel about California so we’ll begin there. Alas, I introduce to you: THE HILL.

Does this song pop in your head? Little boxes..on the hillside..little BOXES MADE OF TICKY TACKY! Me too.

Here it is close-up.

There are a few things about the photo that effectively sum up some general truths about California. Let’s start with number 1. The weather is basically perfect here. While there is a term called “June Gloom” which refers to a cloudy, overcast weather pattern occurring mostly in late Spring, it’s pretty much paradise the rest of the time, with a dusty cloud now and then and the average annual temperature right at 75.4 degrees. I’ve heard people complain that they miss not having four seasons here, which I get. I happen to love rain and we all know how much girls love sweater weather. However, there’s something to be said for never having to shovel a driveway or scrape away ice off your windshield with a credit card. (I lived in Colorado for 10 years; snapped one license and one library card in half.) It’s also comforting to know that if the air conditioner breaks in your car, you’ll survive. You’ll thrive even. Whereas if this scenario were to occur in New Orleans, not only would you literally vomit and die of heat exhaustion, you’d most likely be in a really shitty mood for the last few moments of your life. Having been here a few weeks, I’ve encountered the June gloom a couple of days; it’s tolerable. And it doesn’t last. The real problem is attire. It’s not quite cold enough to wear a real jacket but it’s too cool for short sleeves. These are called California problems, and they’re not real problems. You stock your closet full of every color cardigan, and you bring one with you wherever you go. It’s called cardigan weather people. You’ll get used to it.

Now let’s talk about outer beauty. A place that feels this good must look like trash, yes? It couldn’t have it all could it? Hahaha. The first time I stepped off of the plane in Orange County, I felt like I was in Never Never Land. A rainbow cast its arc over the airport and that song “I’m Walkin’ On Sunshine, Whoa-Oh, and Don’t It Feel Good?!” was playing on repeat from what must have been underground speakers placed strategically around OC. I remember thinking how beautiful the Ritz Carlton looked as we drove by and then noticing at the last second that it was actually a Walgreens. I couldn’t believe it. I kept rubbing my eyes and pinching myself. If this was all real, why in God’s name would you live anywhere else? “Holy shit. Is that a Burger King?” I asked, pointing to a beautiful stucco building with neon lights and palm trees out in front of the entrance. “The palm trees aren’t indigenous,” my sister reminded me. Which is kind of like showing a dude your boobs and then saying “They’re implants. Is that OK?” Sometimes it’s so nice I wonder if things like hangovers even exist here. It’s like this place was a movie set built in the 80’s that they never tore down and people just kept moving here so they said Ah screw it, we’ll just make this a town.

Speaking of Walgreens, (you know I gots to talk about Walgreens) let’s talk about overly conversational vendors. When you walk into the Walgreens on St. Charles avenue in New Orleans, you pass the same dude asking for money for food out front. It’s now understood that when you give the guy money, he’s going to buy drugs, not food. (I know because he didn’t accept food when I offered it. Cash only baby!) So I give the dude a buck or two, which I’m told only perpetuates the problem and I ought to be ashamed of myself but it’s what feels right so I do it anyway and enter Walgreens to get drugs of my own. Once inside, I’m lucky if I can find someone working there. There’s usually an obnoxiously long line with the clerk mysteriously nowhere to be found and a fire alarm going off in the back, which seems to alarm no one. In Orange County, you walk into Walgreens and are immediately greeted by a smiling vendor and asked if you need help finding anything today. “Uh, I’m fine, thank you.” But I say this with a little bit of scepticism because why are these people being so nice? Do they work on commission? As I get distracted by the “As Seen on TV” aisle and am considering whether or not I should buy Pajama Jeans, I see the same blue vested employee in my peripheral. “Find everything you’re looking for?” “Oh, uh..yeah, yes. Yes, thank you.” I’m nervous because I’m not used to being approached by smiling Walgreens employees and I’m wondering if he’s about to go postal up in here. “What are you up to today?” he asks and I feel like it’s a trick so I mutter something about living on my sisters couch and cautiously make my way over to the Indigestion aisle and look for the bottle of Pepto Bismol that is most economical. I peek around a shelf of “Snuggies” and see the blue-vested employee asking an old woman about her family and is ushering her slowly to the diabetic aisle. I thought the Walgreens commercial said “Perfect” didn’t exist? I pinch myself and get out of there fast.

What about topography? Well let’s see. You have the ocean on one side, the dessert on the other, hilly landscapes in-between and the outline of mountains in the distance. This means you can effectively surf, snowboard, rock-climb and camp all in one weekend. It’s like it’s never heard of the phrase Do one thing and do it well. California’s like Hey, Let’s Do Everything, and Let’s Do it All Perfectly.

There are a few questions I have about California which I have yet to find the answer to. For one thing, where are all the poor people? Like, is it illegal here? Something tells me that dude that I give money to outside the Walgreens on St. Charles Avenue wouldn’t linger here for long. But I don’t exactly know why. It’s like there’s no problems here! Or there’s no appearance of them anyway. Did you know they have scented dog shit bags here? I’ve also never seen a natural piece of litter here. One of the only dirty things I’ve seen since arriving is this:

This is my brother-in-law next to a pool at a bank-owned foreclosed home that he and my sister were being shown by their realtor. (Note the June gloom in the background) But surprise, there were one too many problems with it. So far, it’s the only real glimpse of dirt or grime I’ve encountered. So once again, I took a picture. Here are some more photos of California I’ve taken.

Surfer — The Waves Are Droppin Off At The Wedge Bro!

My Stupid Friend Jess, Trying and Failing To Fit In In SoCal

Most people are willing to tolerate general sameness, (the same weather, the same houses, the same freaking nice people) for the payoff of perfect in virtually every other category. But there’s also this grade school mentality I feel sometimes that I’m too much of a mess to fit in here. Like I’m under-dressed for a party, or that feeling you get when you’re peeing in a bathroom and you know people in the outside room can hear you. It’s hard to explain, but there’s something about “perfect” that’s rough to compete with. Something that makes you feel more spectator than participator. When My Stupid Friend Jess and I were on my brother-in-laws boat and we had just literally played in a pod of dolphins, we were laughing at how amazing everything about California is. Our conclusion was this: There’s nothing left to contemplate in California. It’s perfect here.

Health, Happiness, SoCal.