Jonathan Franzen – FibroM.E.-Awesome

10 Books You Should Read With Me

Published on February 6, 2014February 7, 2014 by Mary Gelpi7 Comments

Going to the bookstore is one of my favorite mid-day activities. I’ve been under the weather lately so it was nice to get out and see real life. I felt like Bell from Beauty and the Beast in that library singing. Sadly there’s no ladders at Barnes and Noble but it was enjoyable nonetheless. I left with my next TEN books to submerge in for however long it takes. I’m watching ice-skating and that Olympic music they play when they cut to the commercials is so inspiring it makes me feel like I could become the president. Which is even more reason to read. So here’s the list! Cue the music.

1. Where’d You Go, Bernadette? -Maria Semple

I remember picking this book up and flipping through it at my last bookstore outing and for some reason didn’t end up buying it. When I spotted those big black fly-type eyes on the cover I grabbed it immediately before I could back out. Shameful fact: I really love this books cover and that played a big part. I know the cardinal rule, but it’s also sustained positive reviews for a very long while, and Jonathan Franzen loved it and so in the pile it went. Mostly though, I loved the cover.

2. Dance Dance Dance -Haruki Murakami

So the Wind-Up Bird Chronicles was one of my favorite and most adventurous reads last year and discovering the many other “Masterpiece Novels” he’s authored I was way excited to dive into another one. I like that his books keep your imagination and consciousness running. I’ve got high hopes. I know it will be good.

3. Why Sh*t Happens (The Science of a Really Bad Day) -Peter J Bentley

I liked the title. And the subtitle. Also it was on the bargain rack. It’s probably stupid.

4.Oneness With All Life -Eckhart Tolle

This is a bite-sized version of A New Earth, which I’ve read and re-read and loved. But I forget the teachings often. I go back and reread passages that I’ve felt I’ve never read before. I think it’s one of those that stay on your bed stand for life and by the time you die the entire book is highlighted. Anyway this smaller dosed version is made of “inspirational selections” to be read maybe one or two pages per day and to reflect on. Think of it more as a daily meditation. Since it’s so easy to forget the big stuff, I like to have something in the morning or before sleep that gets my head right. It’ll go on the nightstand.

5. The Illuminaries -Eleanor Catton

Do you ever feel like the Universe is talking to you? Well this book came up three times in three days and I took it as a sign that I gotta get in on it. It’s also a gargantuan read (over 800 pages) so it will be my friend for a long time. Or enemy.

6. Proof of Heaven -Mary Curran Hackett

I’m unfamiliar with this author but crudely, I fell for the optimism implied in the title. Even though it’s a novel among hundreds of actual accounts of Heaven, the back summary drew me in as well as the first two pages and I was like “Cool, I’m IN!” and now that I’m reflecting on that I really hope I didn’t say it out loud because that happens sometimes. Anyway, this is not to be confused with Proof of Heaven the memoir by a neurologist who died, went to heaven, and returned. I’ve heard really good things and watched his account in interviews. Pretty amazing stuff. That read is next in this Heavenly genre. (Mom, you said you have it. Give it to me!) But this one was on the bargain rack. Girls gotta eat.

7. Born Under a Lucky Moon -Dana Precious

Complete blind buy. Liked the cover. Like the summary. And the price. It’s Olympic Season so I’m really going for things.

8. The Almost Moon -Alice Sebold

Moons are so #trendy! I hadn’t heard of this one either but it was a #1 National Bestseller and the author also wrote The Lovely Bones which I read long ago and really loved. And it was on the bargain rack. OK you know what? I’ll just tell you when it wasn’t.

9. The Four Agreements -Don Miguel Ruiz

I have been hearing about this book for a long time now. It was published in 1997 but stayed on The New York Times Bestseller list for 7 years and sold 4 million copies. The premise of the book is simple but beautiful– in lieu of agreements and rigid beliefs we try to adhere to but often end up limiting our happiness, Ruiz suggests a personal code of conduct he calls The Four Agreements. Wanna hear em? Sure you do.

Be Impeccable With Your Word.
Don’t Take Anything Personally.
Don’t Make Assumptions.
Always Do Your Best.

I don’t really love “gimmicks” for life type of books, but this one seems much deeper and substantial while sustaining its worth for years. Furthermore, it just sounds like a refreshing and happy way to live. Can you imagine never taking anything personally? Sounds awesome. I want to know more, so it’s going on the night stand. And it was FULL PRICE!

10. The Leftovers -Tom Perrotta

OK yes it was on the bargain rack again and no I’ve never heard of it or the author. But it’s a post-apocalyptic thriller type of novel which I don’t read often (like never) and I wanted to mix it up. I threw it in the bag because while the subject matter is dark, it’s also wrough with dark humor (my other best friend). It follows the survivors in the wake of the “Sudden Departure” as they try to go on with life keeping normalcy in mind but, you know, people are missing and the world is all messy. In my small confined life, it felt good to take a risk.

Health, Happiness, and 10 New Friends.

Join me won’t you?

The Great Indoors

Published on August 24, 2013 by Mary Gelpi8 Comments

I’ve spent most of this last week in bed, or in and out of sleep on respective furniture that I turn into a bed. But mostly in bed. During crash periods I have a lot of time to sit around and think and do nothing. And while “doing nothing” sounds a little worthless and at least a little depressing, I’ve gotten pretty good at feeling bad. That is, I’ve found ways not to succumb to complete boredom while spending my days and nights in the supine position. But I have to be decisive and proactive when it comes to mental stimulation. It’s easy to do nothing and think nothing and waste away hours watching cats on the internet. I’ve done a lot of that too.

Currently I’m reading “Further Away”– a book of essays by author Jonathan Franzen. It was given to me by my brother Nick, who wrote on the note inside to add it to our virtual book club. Nick and I don’t live in the same city and considering how poorly I keep in social contact even with people I care most about, we don’t talk so often. But we have similar taste in things and it’s true that I trust any literature from him will be enjoyable. Like the others this one doesn’t disappoint. I gave him the book “Why Does the Universe Exist?” and said it might be a good starter for the club. Nick is a full-time professor of architecture with multiple side projects and is a husband and father. I’ll be impressed if he has the time to finish it. I have nothing but time but in retrospect, I can think of at least three books in the last year I’ve simply left unfinished with less than 100 pages left. For whatever reason– It might be a commitment problem on my end. Because oddly enough I enjoyed the books I left undone. (Except 50 Shades of Grey. I just couldn’t do that one, even from a humorous standpoint. It was just so bad.) At any rate, I like that we’re trying. I know I need to read more and it is truly one thing, a gift even, that I can do whether or not I’m sick. I could read for hours and feel somehow refreshed at the end. TV and the internet are bottomless. I could be dead tired but watch more, click more, disengage more. It’s far too easy to fall in and at the end I never feel great. I’m like where am I? What time is it? How long have I been watching Tosh.0? I don’t know how many times I’ve watched the Kardashians and rolled my eyes thinking to myself that it’s the stupidest show on TV. And yet when it shows up on the guide, I almost unconsciously go straight to the channel. It’s like mindless auto-pilot in the way of my brain. I think it’s their hair that keeps me coming back. It’s just so pretty.

Speaking of the Kardashians, did you see the photo of baby North West? I think she’s cute. Wait, why do I know what their baby looks like? Because if you watched TV or were on the internet yesterday, it was everywhere. As well as mass hysteria about Ben Affleck becoming Batman. Maybe that says something about the places where I get information. But it also says something about the things that gain momentum and attention and a dialogue. Meanwhile, my state is sinking. I don’t totally understand the nature of a sinkhole. Except that I’m pretty sure it’s unnatural. And it’s a problem when entire trees are being swallowed whole. Something about salt domes? But why take the more effort-requiring time to find out when I could just look at a tumblr that makes fun of what Kanye’s baby looks like? It’s so easy to just lay back and look at what’s easy to look at and make fun of what’s easy to make fun of. But it’s not very wise for someone like me to do too much of that. I constantly have to remind myself to be careful with how I spend my time. I truly have a lot of it.

Anyway, maybe by the next post I’ll be much more knowledgeable about sinkholes. Or I’ll have a lot more photos of baby Nori. Anyway, I’ll continue my quest to be at least a half-way informed citizen and spend my horizontal time wisely. I love being outside but on weeks like this one, I’ve mostly been inside which can be wearing too. But don’t get me wrong, I’ll still watch internet cat videos because come on, that stuff is funny. And laughter is important. And if we spent all our days indulging in bad news we could succumb to despondency and boredom just as much as if we watched TV and internet videos nonstop. It’s all a balance and I’m always in search of the middle. So far, 29 has been just fine.

Health, Happiness, and Wouldn’t You Think Sinkhole Would Be Two Words? Me too.

Hard Knocks Island

Published on June 13, 2012June 13, 2012 by Mary Gelpi13 Comments

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 Know I Know. Don’t Freak Out.

Published on May 8, 2012May 8, 2012 by Mary Gelpi25 Comments

You’re in the right place. This is still the blog about fibro, pills, humor and attempted awesomeness. I gave the blog a little makeover and I’ve been putting it off for a while now, but the time has come my people. First, I shortened the address from 25pillsday.wordpress.com to just 25pillsaday.com so we can all breathe easier knowing we have 9 less characters to type. Also as someone who’s 5.3 feet proud, I always argue that shorter is better. Secondly, all the crap that used to be at the bottom of the page is now easily accessible at the top. See? Right over there. >>>>>>>>> And that old picture of all those drugs that were the colors of library furniture have been replaced by bright neon cascading pills in the background. It’s all so magical. It’s funny that I would even consider so heavily the design or lack thereof of something that makes me no money and is in most people’s eyes just a hobby. But truthfully, it’s my baby. I care a lot about it. And in recent nights I’ve woken up like Wait, should I put the links on THE LEFT SIDE?? Then I’m like OK there are wars going on and the location of links and font color is not so big a deal. I just needed to pull the trigger. So bang. I’m also reminded of the time I spent an hour picking out a dog collar for Monty and I guess it makes sense I’d take so much time with this. If you don’t like it, just give it a few days. If you still don’t like it, feel free to email me with only these words: YOU BLEW IT! I’ll know then what I’ve done. There will be some new additions to the blog but I thought I’d ease into those slowly. We’ll start just with cosmetics.

What else? I’ve spent the last two weeks in California at my sister and brother-in-law’s house in Orange County, California. (Side note: I recently realized my life is whole lot like Rob Kardashians, and that makes me have quiet moments of extreme discomfort.) It’s funny, because both my sister Amelie and my brother-in-law Keegan work full-time jobs, like most normal people. So in the morning they’re getting ready for work and I’m laying on the couch lifeless, half conscious. Sometimes I don’t even wake up to them scrambling around because I think my sleep schedule is so incredibly screwy that I’m in my REM cycle at 8:30 a.m., but that’s something different altogether. Last week Amelie was putting the final touches to her work attire in the bedroom and Keegan was getting ready to walk out the door. I was fumbling through pills on the couch. Before he walked out Keegan asked “Are you sure you don’t want me to leave the car here for you? Like are you going to get restless?” Amelie and I answered in a monotone voice in unison: “No.” “You’re not going to get bored?” Again, from both of us. “No.” Then we kind of all laughed, maybe for different reasons, and the functioning people went to work and I opened my book.

I am reading two books. I must admit, after I finished reading Freedom I felt like there was this new hole where something solid used to be. The way it feels after you lose a tooth. Then when I was in New York, my brother told me Strong Motion written also by Franzen competed heavily with Freedom so I brought it with me and have been enjoying that one too. It’s written in true Franzenian form and I once again feel like I’m getting a literary/science education just by reading the work, so it’s fun. But I don’t know that anything can top Freedom. OK I’ll stop talking about that now. Except wait I have one more thing. On NPR people with cool voices were all telling Jonathan Franzen he needs to keep an eye on Nell Freudenberger and there was all this jabber about the book The Newlyweds and so I decided to give it a try. So far it’s really good. She isn’t as inventive with the prose as he is but her writing is clean and the storyline has me going; a mail order bride from Bangladesh marries a 30 something engineer dude in upstate New York and there are hints of secrets and controversy and all the good stuff that makes good books good.

The other book that I just finished is The Seat of the Soul by Gary Zukav and it was really, really incredible. Not as dense as A New Earth but just as enlightening and really reassuring, especially if you fear death. And for a while I think I became a little too obsessed with this idea that I was going to die. In the sense that I would actually start to wonder, maybe I just won’t die. Like maybe I’m exempt? But duh, I’m not. And it’s cool, because he says all this stuff that makes so much sense and I basically underlined the entire book. I feel like I’ll just keep it at my bedside forever now. Until I..you know, die.

OK, that’s all the housekeeping for today. Or should I say book-keeping. Get it? Health-wise I’ve been managing pretty well. This morning was my first migraine I’ve had since leaving NYC two weeks ago. That’s a long time for me! Good stuff. Maybe I just need to be by the ocean for the rest of my life. California is awesome, but weird. I’ll talk about that next time. Cliffhanger!!

Health, Happiness, and Give It a Few Days.