Hard Knocks Island

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.

13 thoughts on “Hard Knocks Island

  1. I would say that your paralysis is more likely to be sleep paralysis than cataplexy, if it only happens when you wake up from a nap or from sleep. Many people experience this from time to time, and even though it’s scary, at least it’s preferable to its opposite~ lack of paralysis while dreaming, which can lead to injury when dreamers act out their dreams!


    1. I was diagnosed with Lyme Disease early on, but it was ruled out 4-5 years later after years of massive doses of antibiotics and antivirals and other medications to handle their side effects. During that time, I did A LOT of research on it, and can mimic a lot of other diseases. There is a lot they don’t know about this disease, and a lot of the diagnosis is clinical, and to get a good positive blood result, it has to be sent to a specific lab which has the right titers? – I think thats right. I’m in a bit of a fog right now. I hope its the right diagnosis for you, and that whatever they are treating you with is helping you feel better. Because that is all I would ever want for anybody, but just be careful, and maybe get a second opinion. Especially with everything else you have. I don’t know too much, but maybe you have Lyme and its presenting as CFS and Firbomyagia?


  2. i love how you express things: “the words would fall out of chronological order”… such a perfect way to describe that feeling. i couldn’t focus enough to read anything for several years after my fibro hit, and that says it all. :-) i’m so glad you’ve found out you have Lyme disease, that’s something to work on fixing, right? And now i think i’d better talk to my doctor about that dizzy thing, cuz i’ve been having that a LOT lately.

    Mostly, i’m glad to have found you, love how you think and express yourself. It does get feeling a little crazy inside our exhausted, achy heads, doesn’t it?


  3. That sleep paralysis actually has an even more official name of “Cataplexy.” I had a basketball player on my team several years ago with it, as well as narcolepsy, so I had to have her run laps between quarters to keep from falling asleep on the bench. =) I learned a whole lot of info on sleep disorders that season!


  4. Keep in mind that YOU WILL GET BETTER some day. You won’t be like this your entire life. A lot of us have medical issues and most clear up on their own. (It can take years, but it does happen.)


  5. First of all, I love your blog. You are very inspiring to me. I hate to throw something negative at you, but I can’t read your posts under the pill graphic. My eyes and brain just can’t process the busyness of all of it and the loss is definitely mine, but I just wonder if anyone else is having this problem.


    1. Whoa! Please disregard my first post. At first the entire pill graphic was on top of all the text, but when I posted my comment the graphic just became a border around the text box. I can read it now! ;) Sorry!


  6. I have had that happen to me when i am napping too!! it isnt the illness, its called sleep paralysis. When you sleep, your brain sends signals to inhibit any muscle contraction. If you wake up before the brain sends signals to activate muscle contraction, you cannot move your body, and consequently, become “paralyzed.” basically your body is awake but your brain hasnt caught up yet, but it was really scary the first few times it happened to me! good luck with everything!


  7. I’m glad to hear you are getting some answers and possibly some relief! That view is beautiful. I would float on a raft in that pool and read all day.


  8. Sounds like an absolutely wonderful place to stay! So glad you are getting to enjoy yourself some, and I hope the doctors appointment goes well


  9. Good luck! Have doctors managed to figure out which of your symptoms are from which illness? I have the fibro and the chronic headache, but not CFS or lyme.


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