Category: Fibromyalgia

Sick and the City

Published on by Mary Gelpi9 Comments

I discovered the cure for insomnia–it’s waking up!  So here I am. Totally tired, but unable to sleep. Go figure.

I’m writing from the luxury of an aerobed in the living room with New York City rain slanting down our windows. There’s something about New York that makes me feel connected–which is funny because it’s a large city of strangers who don’t know or care about me, but on a walk outside I feel like an absolutely intrinsic participant in life and that things are as they should be. Even inside an apartment, on the third floor, behind shades..the pulse beats in. I like watching people walk down the sidewalks, enthralled with their busy lives. I like seeing every breed of dog and owner pass in front of our building. And I like seeing a light go off in one room and on in another. No one seems to notice me at the window, but I smile at them if they do.

It’s funny how at home I feel in NYC. And I sortof cheated at New York. I lived and worked here for two summers and spent a few months here last year when I was sick and jobless. My first job was an unpaid internship at GLASS Magazine in Brooklyn. It was unpaid, so my brother let me stay with him for free, and he gave me the bed. The next summer I came back and served drinks to tourists and New Yorkers on a sailboat called The Shearwater that toured the Hudson River. That job seems way too cool for me to ever have had, but my brothers friend got me the gig and I took it. That job paid but Nick let me live rent free anyway. I say I cheated at New York because as most New Yorkers will tell you, it’s a hard city to sustain in. Not just financially or career wise. It can be a dark city too; isolated, unapologetic and relentless. Most people here have gone through some sort of struggle tied to the city in order to get where they are. I on the other hand never really had a struggle to overcome here, because Nick did that for the both of us. He moved, worked hard, met cool people, found all the best spots, and then just sort of shared them with me when I came. In that way, New York has always been glamorous to me. It’s the New York in the movies. All my attachments here were temporary and I never owed anything to it–except those $600 in parking tickets I accrued that one summer. Shit, I still need to pay those.

I’ve spent the last week making art, listening to music, and wondering what’s in store next. I’ve started to become a lot more comfortable with the uncertainty of my life. There is no plan. There is no “mine.” And there’s not much money or organization. I don’t even unpack my suitcase when I go home anymore. But that’s something I think I needed to go through. There are no certainties in life. Even the most promising plans aren’t resilient to fairness or the universe. As much as I used to think there was, I see now there are no rules, and no fair or unfair. There just is and I just am.

I always have this fear that when I sit down to write or draw that what I create will be terrible. I guess the fear is that if I create something terrible, then I haven’t succeeded with the purpose, and then I’ll be cursed and everything I create from then on will be crap. But I see now that not only is that fear irrational, it’s useless. I know this sounds a lot like an after school special, but the real failure is never sitting down, and never giving voice to the things that move you. When I was here last spring I was strongly considering doing stand-up comedy at a comedy club run by my friend Mark. It’s something I’ve always wanted to try, at least once. Because the thing is, if I bomb, then I’ve got this great story: I did stand up comedy  in NYC when I was 27 and got booed off the stage. WINNER. And if I succeed, then I’ve made real New Yorkers laugh–and that’s a hell of a story too. I was speaking with my mom about it and admitted I was nervous to try and she said “What’s the worst that can happen? You get on stage and no one laughs?” “Uh, right. Yeah. Exactly that.” That was the worst that could happen, and that scenario is kind of a nightmare. But I think going for it is a success in itself. The very act of braving the audience and swallowing the risk of humiliation is half art in itself. One day New York..I’ll tell you jokes one day.

Anyway, I’ve decided I’m just going to keep trying things. I’ll keep drawing even though I’m not very good and I’ll keep writing even though I don’t really know where it’s going. There have been few certainties in my young life so far. But I do know that every person I look up to has continued and persevered  even when they didn’t quite know where they were going. They took risks and they didn’t always play it safe. So I’m going to keep creating. Even when I’m tired, even when I fail, even when I have no idea what in God’s name I’m doing, I’ll just keep going. And hopefully along the way, it will happen one day. Whatever it is I’m looking for, I’ll find it. Something tells me I’m close. Or maybe it’s just begun. Either way- like the struggles and people and persistence of  NYC, I won’t spend so much dissecting everything–I’ll embrace change as it comes and forgive all the plans I had. There’s just no other way to do it.

Here’s the most recent drawing. It’s titled: “As You Can See, I Don’t Have a Job” 8.5 x 11. I’ll post the rest tomorrow.

.

Health and Happiness and 

If I Was a Horse, They’d Shoot Me

Published on by Mary Gelpi9 Comments

Maybe that title is a little extreme, but sometimes when I’m counting out my pills in the morning and filling up my coffee mug for the third time, I wonder about my existence. Not in the depressing suicidal way, but more in terms of how such a weak physical specimen as myself has made it this far, it being survival of the fittest and all. I’m far from fit, but I guess I am surviving. But when I see people on facebook climbing mountains and shit I think crap, I can’t even stand the thought of standing in line without needing to faint. What am I doing here?! Then I get off facebook because I’m really starting to believe it is the demise of human beings. I think I’ll post that thought on facebook.

After visiting with the doc in Miami and changing around a few doses of things, we agreed upon my next round of treatment; which is two anti-biotics for the next two years. Woo! Yeah! Apparently, all my liminess isn’t gone, and the 6 month run on those overly priced horse pills didn’t do the trick. SO. Round two. To be honest, I’m fine with this decision. I mean, my pill bag has just enough room for two more bottles, so I’m cool with it spatially. I could look at it and be like waahhh two years of more pills. Or I could look at it as; In two years from now I presume I’ll be alive anyway, so would I like to be full or free of lyme disease? It’s my patriotic duty to choose freedom. And anti-biotics. So here’s to more pills! We’re waiting on the blood work still to finalize decisions but it’s looking like I’m in it for the long haul. Which is fine because, you know, I have the time.

So I’ve been reading A New Earth and it’s really awesome even though I’ve read it before. I think it’s one of those books you could continue to read your whole life and never fall short of gaining incredible meaning. The only other book that has done that for me is The Giving Tree by Shel Silverstein. I love that book.

Aaah Childhood.

So anyway there’s this part in A New Earth where Tolle is talking about human evolution. It reminded me of my first day of my college anthropology class. The teacher brought up evolution and began to talk about the timeline for the semester and then started to give his personal viewpoint on evolution so the class would have a clear direction. Then he asked if there were any questions and a student raised his hand and asked “But if evolution exists, then why have humans stopped evolving?” The teacher smiled big and shouted “Great Question and THANK YOU for asking!” (This was his enthusiastic response to any question a student decided to ask during class.) Then he put his hands together under his chin and answered with “That’s the good news. We haven’t!” He went on to explain that evolution are adapted changes made over a long period of time, and that if we compared modern humans with our counterparts 10,000 years ago, there would be numerous differences. I at least know that in terms of communication even in the last ten years there have been an incredible amount of changes that will forever change the ways humans interact with one another. I’d love to show a caveman Facebook.

Wait why don’t I just actually poke her?

Anyway, back to the book. Soo Tolle is talking about humans and how we’ve evolved and that one of the biggest fundamental differences between human beings and the rest of the animal world is that we are conscious of our consciousness. This kind of awareness is what drives the fundamental questions like “Who Am I?” and “What Is My Purpose Here?” Although these are the kinds of questions that can be terrifying or seemingly impossible to answer, they are what make us uniquely human and for that they should be celebrated! And pursued, too. What he also says is that “The next step in human evolution (enlightenment) is not inevitable, but for the first time in the history of our planet, it can be a conscious choice.” Cool dude!

Along those same lines, I watched a lecture that Deepak Chopra gave a few days ago, and much of what he spoke about correlated with this very concept. (Synchronicity, Yeah!) He talked about the mind, the body, and the soul, but he began by expounding on the intelligence of our human bodies independent of our human minds. For example, our bodies are made up of 100 trillion cells, which is more than all the stars in the Milky Way Galaxy. Each cell is performing roughly 100,000 activities every second and every cell instantly knows what the other cells are doing and correlates its activities respectively. This is how we are capable of thinking, talking, digesting food, playing piano, killing germs and removing toxins all at the same time. “This is the inner intelligence inside of you that mirrors the wisdom of the Universe,” he says. It was cool to hear him speak about this because so many times I’ve laid in bed with my hand on my heart, listening and feeling my heartbeat and thinking “Who’s making it beat?” I guess the answer wasn’t a who, but a what. Or a who-what.

Then he broke down human intelligence into four levels. He said that the highest form of human intelligence is State of Being. He describes this as the ability to observe yourself without judging yourself. The Second highest form is Feeling- our ability to feel compassion, joy, empathy. The 3rd highest form is Reflective Thinking- Who Am I? What Do I want? What will my contribution be? What inspires me? And the 4th highest form is Doing- the ability to create happiness. He also provided a pretty simple but profound definition of the soul- the space between your thoughts. Think about it.

Anyway seeing as how sometimes I’m a worthless physical specimen that doesn’t “do” a whole lot, I liked how doing was last on the list. :) But it was his last thought that was most reassuring to me, since it had been a very sick week and I was feeling a lot like a horse needing to be shot. “The next state of evolution is consciousness. It will be survival of the wisest, not the fittest.”

Health, Happiness, Horses.

Greetings From Bed on Hard Knocks Island

Published on by Mary Gelpi20 Comments

I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.

Not Too Shabby a View

I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.

Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!

The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)

On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone it so many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.

Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.

In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.

Health, Happiness, Crash and Burns

A Salute to Step Dads

Published on by Mary Gelpi6 Comments

Interestingly enough, I have celebrated Father’s Day in my 27 years with 3 different father figures; My deceased dad Doug, my deceased step-dad Roger, and now my live and well step-dad Marc. (Don’t get any ideas, Marc.) Each of these figures have witnessed me at a different time in my life. I only had my dad until the age of 12, but I have never felt ‘cheated’ by losing him at a young age. I feel that the first 12 years of a child’s life are critical. My parents taught me from the day I was born what unconditional love looks like, and sometimes that included tough love, but I must say, even that was pretty rare. I learned what a happy marriage looks like, the dynamics of a large family, and that challenging times can be the ones that make you closest. We had our fair share of them. I truly look at my childhood with endearment because while maybe that chapter only lasted 12 years, they were filled with love, happiness and togetherness. I also had my two older brothers, Nick and Doug, both who took on a father role to me in my dads absence, and that has made an incredible difference in my life. To put it simply, I was made to feel that I mattered as a kid, and I think at a fundamental level that is what most children require in order to turn into secure adults. So Happy Fathers Day to Doug, Nick, and to my dad; I guess you knew that 12 years was all I needed and that I’d be left in good hands. You were right!

In chapter 2 comes the introduction of my first step-parent; Roger. Roger didn’t share so many traits with my dad except one vital one- he loved the crap out of my mom. Roger had a difficult life that had its fair share of pain and hurt. I could tell when he spoke about his childhood, it wasn’t the same as mine. I don’t think he was always shown unconditional love or made to feel that he mattered, so when he confronted that kind of love with my mom and her four loving yet obnoxious children, he didn’t always recognize it when it was there. As much as he took warming up to our family, I took warming up to him. It’s always an adjustment when new members join the gang. The whole dynamic shifts. My mom changed, the living situation changed, even our dog Bacchus changed. So it was challenging for me at age 16 to try to plant my feet in something solid. But after two years under his roof, it actually started to feel like home. Underneath his cautiously built walls was an incredibly loving, sensitive and generous person that after a while I was finally able to know and really enjoy. I used to call home during LSU football games and he’d be rooting them on and happy to talk to me. Somehow through all the muck, we were able to find each other, and it turned out to be a pretty great relationship. I would have never, ever, guessed that Roger’s role in our life would be a quick one too. My mom and him were only married 5 years when he died suddenly of a heart attack. I know I know, this sounds depressing. But both my mom and I feel that while we were a part of Roger’s life for such a small stint, it may have been the most vital. We were able to show him some of that unconditional love we’d both been a part of, and I think when he died even though it happened to be alone in his hotel room, it was the least alone period of his life. I feel assured of that. So Happy Father’s Day to you Roger; it wasn’t always easy and it didn’t last long, but I think we both showed each other a thing or two that ended up making a big difference.

Chapter 3; present day. Marc is my 3rd and hopefully my last father figure. When my mom and Marc married a few years ago, I figured we’d get to know each other over the years, but to be honest, since I was older and away from home, I always figured he’d be more my ‘mother’s husband’ than something like a step-dad. But wouldn’t you know it, at age 26, I end up too ill to work, unable to keep my apartment, and move myself and my dog back in with my parents–back to the house I thought I’d never live in again. It was not something I wanted or readily accepted and for that first month or two, I wasn’t exactly joyful to be around. Meanwhile right under my nose, I wasn’t considering that a sick girl and her dog moving back in with her parents wasn’t necessarily easy on them, either. But day after day, I was taken care of there. I wasn’t told that they were doing me a favor, I wasn’t reminded of the gift I was receiving and nothing was ever held over my head. Once again, I was shown how powerful a love like that can be. Marc didn’t owe me anything really, I was his wifes kid after all. But that is not at all how it played out. He turned out to be a lot like a real dad. I found myself saying “my parents house” and really feeling like I had two parents, not a mom and her husband. The point is, terms like “step-dad” and “blended family” have kind of become meaningless for me. It’s simple; blood doesn’t make a family, love does. And there’s plenty of that going around. So, Happy Fathers Day to YOU Marc! Thank you for playing your role so well to me, and being such a great grandpa to Monty. I’ll pay it back when you’re old and can’t feed yourself. ;)

Health, Happiness, and Happy Fathers (or positive male role model) Day!

Hard Knocks Island

Published on 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.

Go Ahead, Cry It Out.

Published on by Mary Gelpi23 Comments
There there…

You know, you’d think as someone who takes 25 pills a day, I would have a pill for everything. And when it comes to aches and pains, muscle spasms, migraines, restless legs, or insomnia..it’s true. I’ve got a pill for most things. I carry around my pharmacy in a medium-sized black bag with birds on it. It’s like my second purse, but probably more important. But in the depths of that entire bag, among all the bottles of pills of every color and every shape, there is no pill for crying. Sometime’s life is really hard, and you just have to feel it. In two words; it sucks. It’s tiring and seemingly unrelenting and comes and goes in waves but just like everything else, it won’t last. It isn’t forever. And sometimes that’s the only thing to get you past the moment.

Sorry about being all depressing, but I’m going through some hardships right now and I told myself I’d write good, bad or ugly, so here’s sticking to goals. I won’t get into all the details but I am going through a breakup, thus the random waves of crying that come on like sudden nausea. It’s awful! It’s also funny, because truthfully, I was never much of a crier. If I felt the urge to cry I held it back, and I especially didn’t like to do it in front of people. I didn’t cry at my dads funeral. Maybe it’s because I was 12 or maybe it’s because seriously, his funeral was somehow a joyous occasion and I don’t really know how to explain that except that we sang happy music and felt proud that his life filled up an entire church. It wasn’t until my step-dad died, unexpectedly in the middle of college, that I turned into a crier. There was no holding it back anymore. It was tragic and it happened fast and left the family a little lost, especially my mom. It’s funny because my mom was never much of a crier either, but after Roger died, the same thing happened to her too. Sometimes we’d sit in the office, trying to tackle another post-death obstacle like canceling Roger’s phone (which somehow took FOUR MONTHS) and we’d sit there just sniffling and wiping tears away. Truthfully, there wasn’t always something wise to say. A quote about God’s plan or everything happening for a reason really falls short when you’re in the very raw place of grief. Sometimes all there is to do is cry or be a shoulder to cry on and remember that it won’t last. But what I’m trying to get at is this; it’s OK to cry.

I don’t know how our society or culture became this way, but it feels like somehow we view crying as a weakness. And when someone begins to cry our first impulse is to try to get them to stop. “Don’t cry,” we’ll say. Or “It’s OK” or some other vague comment that is usually untrue. The problem is crying makes other people uncomfortable–we’re a people of solutions, and crying means that someone is in pain or hurting some way, and we want them to stop. That’s the nice thing about dogs, they let you cry and cry and they don’t judge you for it. The thing is though, crying is not only natural, it’s good for you. It’s acknowledgment and acceptance that yes, this moment or time is rough. It’s challenging or painful. And the truth is, you just have to feel it. You have to exist in the grit of it. It hurts. But it also means you’re awake. I thought after 2011 that I would literally run out of tears. There was one day that I cried on and off most of the day and finally by 9 I thought wow, I think I’m all cried out! Then a commercial about abandoned dogs in New Orleans came on and I burst into tears. Nope, wasn’t all out after all!

My point is, that instead of telling someone to stop crying or to be strong or to move on, we should try the opposite. We should encourage them to cry. Tell them to go ahead and sob it out. Hold their hand or offer your shoulder or pass the whole stupid box of kleenex if that’s what it’s going to take. But don’t try to stop the process. Sometimes life is sad, and it’s OK to acknowledge that and it’s OK to cry about it. Babies do it. Women do it. Men do it. Even elephants do it. Just like laughter is an expression of something funny or entertaining, crying is an expression of sadness or loss, it is honest, and to repress it is only going to make it hurt more later. Simply put–let it out. Shakespeare said “To weep is to make less the depth of grief.” That being said…Waahhhhhhhh.

Kidding. I’m not crying right now. I’m watching the Golden Girls with Monty and accepting that this is a tough time but I’m going to survive. If I could recommend a new class for college it would be called Breaking Up 101. I have thought this for a long time, because breaking up is one of the hardest experiences and worst pains you can feel, even if it is the right thing to do. But we’re conditioned to think that if you feel this bad, then something’s not right–you shouldn’t do it. So then it follows, if you’re miserable from a breakup, then maybe you made the wrong decision? The truth is, there is never a good time to break up, it hurts like hell whenever it happens, and it’s going to screw with your life for a while. Aka…you might burst into tears while watching Say Yes to the Dress or you might suffer an identity crisis and start wearing brightly colored wigs like Kim Kardashian did. But that’s kind of how it goes. It’s tough, but it won’t last.

Anyway, that’s what’s going on in my life…how are you? Haha. I hope this doesn’t sound too tragic. Everything and everyone will be OK. I am assured. Mostly. But I still get waves of tears and random things that set them off, like an old photo from college or coming across my old business card from when I used to have a real job and my life was more..clear. Sometimes I feel like I’m floating on a raft in the middle of the ocean and am just drifting in no particular direction at all. It’s living in the “grey” of things. But it’s OK. I’m going to cry and then I’m going to stop and then I’m going to pick up the pieces and keep going. Because that’s the thing about life..it goes on.

Health, Happiness, and BOO HOO!

*Photo Credit: Jill Greenberg

Happy Stuff: Making a Bad Day Better.

Published on by Mary Gelpi26 Comments

Yesterday was a tough day. It was one of those days that you sit in a room by yourself in silence and then out of nowhere this question makes itself known; Who am I and what am I doing?

This isn’t such a rare thought for me to sit on, but spend too much time sitting on it and you’ll be no one and do nothing. The question arose in me because this week has been rough for me health-wise. And when it’s your fourth day in pajamas- no matter how awesome your pajama pants are- it makes you consider your existence in that essential kind of way. I’m like, dude, why am I here? And feeling like a human wasteland is just not a good feeling. But also, it’s more a thought derived from our egos and it is mostly untrue. In a clearer head I know that my existence matters and everyone who is alive matters. That is true. One of the shitty goals of the ego is to make you feel separate– from earth, from society, and from God. The truth is that we’re connected to all of these things and that our existence matters.

So there I was feeling all down on myself and I’m like you know what? This is crap. I’m not going to sit here and feel sorry for myself. I’m going to do something happy. And strangely I felt this weird desire to run. Strange because mostly I hate running. But if I had energy, I would have put on those professional looking running clothes that my sister and brother wear when they go jogging and feel the wind in my face. But the truth is, I’d probably tire myself out getting dressed before even getting out the door. Plus it’s so hilly here, I’d probably vomit after the first hill. My fatigue level has been rough this week, which I think contributes to those existential crisis moments of Who Am I and What Am I Doing and Am I Going to Live on my Siblings Couches Forever? But you have to cut life into slices. Sometimes you take it by the week. Sometimes by the day. And yesterday, by the hour.

Sometimes you have to reach out for help, so I texted Gabe “Life is hard!” and he texted back, “Yeah, it is!” And I remembered, oh yeah, everyone’s life is hard. Haha. Then I was like, OK, I need to bring some happy energy into this room. And the quickest way I know how to do that is through music. So I started looking for energetic happy music to start. I was g-chatting with my friend Emily and I was like ‘Dude, I need some good music. Happy stuff. What movie has a great soundtrack?” And Emily responded “Beauty and the Beast.” Which made me 1. Laugh out loud. 2. Play that song “There must be more than this provincial life! and 3. Remember why I love Emily so much. So then I was like OK, more music. And I kept listening to different things and put together a playlist of upbeat stuff. And I don’t know how, but somehow Tom Jones “It’s Not Unusual” made its way onto the playlist, and if you can imagine a scrawny girl in her pajamas blaring the one and only Tom Jones and dancing like an idiot to that weirdly catchy tune, well then, maybe I’ve made you smile. Because soon I was laughing at myself and what a hilariously tragic day it was.

Next, I took out my favorite sharpie pen and decided to do arts and crafts, because it’s fun and, well that’s the only reason. The thing is, I’m pretty terrible at drawing and painting. But, I enjoy the process of creating. And in the last two years there is one thing I discovered I’m decent at; drawing straight lines. So I have all these pictures at my mom’s house, a few in frames and a few in a folder, of white paper with black vertical lines. Mostly because it’s all I can do and also it requires focus and patience and time, not unlike actual good artwork. And there’s something fulfilling about it. The more lines you draw, the more disorienting it becomes on the page as you continue. Like the lines in your peripheral vision become blurry and then start to move on their own. It’s weird. And fun. I show you.

First You Draw a Couple Lines
Then You Draw a Couple More
Then You Draw Them Till You Feel It’s Done

And that is the art of drawing straight lines. If you’re thinking ‘What is this hippie shit?” I hear that. It’s mostly meaningless. But I like how long it takes. And that it’s simple and looks that way but also requires patience and focus and something about it makes me usually feel a little better. SO LAY OFF ME AND MY LINES OKAY?! Jokes. This one is for sale for 1 dollar and is titled “Welcome to America.”

After that, I received an email from a stranger who told me she reads my blog and that it makes her laugh and she felt the need to reach out and tell me that. I was like dude, the Universe works quickly! I was doubting myself and then this stranger writes me and tells me to keep it up? Cray cray. Thank you for that email Annie wherever you are. Whatever convinced you to write me, pay attention to it, because that just happened to be something I needed to hear at the time that you sent it. Yay for serendipitous universal connections!

And then after that, I came across a video of a rather large dog riding a bicycle and I was like, holy cow, dogs are incredible. And if this doesn’t make you smile you may want to check yourself because there is a very real possibility that you are a robot. Not that there’s anything wrong with that, it’s just good information to know about yourself. Just watch.

A Dog Riding a Bicycle

And if that didn’t do it for you, then maybe you’ll appreciate this dog that dances better than you.

And if THAT didn’t make you smile, maybe this picture of a really cute baby I know will.

Dude, just look at her feet.

Something about this photo just makes me happy every time I look at it and I’m pretty sure it’s her feet. But who can say. Anyway, after the drawing, and Tom Jonesing, and dog cycling and baby photos, I felt a little better. Then I thought of the many ways this day could have unfolded; it’s very easy to fall into a sad day and stay that way. It has happened to me countless times. But I am realizing just how big our role is in the outcome of our days. I had a friend in high school say to me once: “Do you the know the difference between a good day and a bad day? ATTITUDE!” And I remember wanting to punch something when I heard that, but also, it’s kind of true isn’t it? Perception plays a huge role in our lives. If we look at life as against us, we’ll find opposition. If we look at life as for us, we’ll find peace. There will be good and bad days for the rest of our lives. There will be reasons to laugh and reasons to cry. But when given the choice on mediocre days, and we do have a choice, choose the laughter. It’s more fun that way. And most importantly, pay attention! The universe gives us signs and symbols all the time. It is up to us to piece it all together.

Health, Happiness, and More Happiness.

Chronic Fatigue Syndrome; The Game!

Published on by Mary Gelpi24 Comments

When someone asks me what Chronic Fatigue Syndrome (or Fibro) is, I never really know how to put it. I usually want to ask “How much time do you have?” I remember once while being crashed on our couch at home, my mom read off a list of CFS symptoms and 5 minutes went by and she was still reading them off. It was almost laughable. I ran out of fingers and toes marking the ones I had. Since I’ve got the time, I’m going to put the long list here. You can make a game out of it; every time you come across a symptom that you have, take a pill! See? Being sick can be fun. I’m going to keep this list in my back pocket, then it will be accessible whenever I need help explaining the effects of the condition. Feel free to do the same. Ready? Go.

Pain●generalized muscle pain ●new onset headaches ●aching, burning shooting pains anywhere in the body  ●arthragia without joint swelling ● frequent and intense pain in upper spine and neck area ●abdominal pain. Post-Exertional Malaise and Fatigue●Flu-like or hangover feeling following minimal physical or mental exertion, sometimes immediate, sometimes delayed several hours or a day or more and associated with immune activation, with sore throat, tender lymph glands, general malaise, increased pain and cognitive symptoms ●Feeling worse after exercise, rather than better ●Taking a prolonged time to return to pre-exertional function level ●Lack of endurance. Autonomic Manifestations Orthostatic Intolerance:●Neurally mediated hypotension (NMH) i.e. problems with regulation of blood pressure and pulse, especially when standing still; with symptoms of dizziness, light-headedness, slow response to verbal stimuli; an urgency to lie down ●Postural orthostatic tachycardia syndrome (POTS) i.e. Excessive heart rate during 10 minutes of standing still; blood pressure drop upon standing; light-headedness, dizziness, nausea, fatigue, irregular breathing, visual changes sweating, headaches. ●Delayed postural hypotension i.e. blood pressure drop after many minutes of standing, rather than upon standing ●tilt table test abnormalities Other autonomic manifestations: ●Palpitations with or without cardiac arrhythmias ●24-hour Holter monitor results with oscillating T- wave inversions and/or flat T-wave ●breathing dysregulation ●shortness of breath ●intestinal irregularities ●irritable bowel syndrome ●diarrhea ●constipation ●alternating diarrhea and constipation ●abdominal cramps ●bloating ●nausea ●anorexia ●urinary frequency ●painful urination ●excessive urination at night ●pain in lower abdomen. Immune Dysfunction●A general Ill or flu-like feeling, more frequent in the acute onset stage of the illness, less frequent in the chronic stages, most notably post-exertionally ●tender lymph nodes ●recurrent sore throat ●new food sensitivities ●new chemical sensitivities ●hyper-sensitivity to medications and their side- effects ●allergies. Sleep Dysfunction●frequent awakenings ●nightmares or agitated dreams ●non-restorative sleep ●variations in sleepiness and energy throughout the day ●hypersomnia (excessive sleeping) ●Restless legs syndrome ●periodic limb movement disorder (jerking or twitching during sleep). Neurological/Cognitive Symptoms●Easily confused ●Slow information processing ●Difficulty retrieving words●Occasional slurred speech ●Occasional dyslexia ●Difficulty with mathematics ●Easily distracted ●Forgetfulness (primarily short-term) ●Attention deficit ●Inability to focus vision and attention ●Inability to cope with fast-paced tasks ●Overall feeling of “spaciness” or “brainfog” Motor Disturbances:●Loss of muscular coordination ●Muscle weakness ●Muscle twitching ●Loss of balance and clumsiness Overload phenomena: ●hypersiensitivites to light, sound motion, odors ●Inability to block out background noise and focus on conversation●Informational overload with inability to multi-task ●Motor overload, with staggaring and weakness ●dizziness ●numbness●tinnitus (ringing in the ears) ●nausea ●shooting pain ●Overload may cause temporary immobilization. Neuroendocrine Manifestations ●loss of thermostatic stability (fluctuations in body temperature; fluctuations of cold and hot in different parts of the body; intolerance to extremes in air temperature; low body temperature) ●night sweats or other sweating episodes ●weight change, with loss of appetite in some patients or abnormal weight gain in others ●loss of adaptation to situations of overload ●anxiety●worsening of symptoms under increased stress (physical or emotional).

In other words: No, I don’t think that taking a magnesium supplement will make me all better. But thank you anyway. :)

Health, Happiness, Game On.

I Know I Know. Don’t Freak Out.

Published on 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.

Right Now O’Clock.

Published on by Mary Gelpi18 Comments

I bought a watch in the airport on my way to New York. The battery in my old watch stopped ticking not too long ago, but to be honest, it mostly served an ornamental purpose anyway. It’s not like I have a real job and am constantly under a time crunch. But after wearing one for a while, I realized how nice it was to flip my wrist and know the time, instead of wondering around the house to find my phone, which was usually dead, plugging it in, and waiting for the numbers to appear. (There are three clocks in our kitchen at home: The one on the stove. The one on the microwave. And an old clock that hangs on the wall. They tell three different times.) Anyway I found this store in the Atlanta airport where everything was ten dollars. This impressed me. It was the equivalent to The Dollar Store with a less than typical airport markup. So I found this basic orange watch and purchased it for $10, which in my opinion is the deal of the century. But now I’ve been doing all this reading and studying about the concept of time and how letting go of the past and future, even immediate pasts and futures, is an important step towards consciousness, presence. Of course the telling of time serves practical purposes. In my case, it helps me know that I am always ten minutes late for everything. Anyway, I was watching Oprah interview Deepak Chopra and he showed her his watch and you know what it had on the face of it? RIGHT NOW. I was like dude, that’s what I’m talking about! I thought about scribbling that on the face of my new watch with a sharpie. That would of course ruin it aesthetically, but hey, it was only 10 bucks. Bargains rock.

I have been practicing presence. Lucky for me, I am so conditioned in slipping out of the present moment that it has become seamless, so each day gives me plenty of practice. I catch myself becoming sad at feeling sick, disappointed in my productivity, jealous of others resilience, or irritated at not feeling understood. I say three words to get me back to the present: Here and Now. The best way to handle these scenarios is first, not to judge yourself for the feelings you have. Just recognizing when these feelings arise and acknowledging that they exist is the beginning of progress. (If I’m understanding what I’m reading correctly) The second step is to not react to these feelings. And that is the harder part. But as soon as you have created a gap, the tinniest of gaps, between your emotions and a typical reaction, be it yelling, throwing, saying something hurtful, manipulating etc., you’ve done it. You’ve conquered that moment. You’re far from done, because your life consists of a gazillion moments that you can accept with grace, or resist and pay the emotional or physical price; pain, in any number of forms. If you’ve done it once, you can do it again. Now the goal becomes to live in the gaps. As Gary Zukav so beautifully puts it: “Live your life like a feather on the breath of God.” Cool!

I have been thinking a lot about the new state of mind I am consciously trying to move toward. And I’ve been thinking about the illness and its role and whether my state of mind makes a difference. Truthfully, I am not incredibly better physically than I was this time last year. Certainly the first few months of 2011 were the worst. I remember before seeing the specialist in Miami, we had to take data a few weeks before going. One of the assignments was to stand for 10 minutes and then have my blood pressure taken. I remember finding this exceptionally difficult. For the last few minutes I had to lean against the couch because I felt too heavy, too weak to stay standing. We found later this was predominantly due to low blood volume among other things, but the point is, while I have made progress, every day is still somewhat of a battle. There are constant symptoms showing their faces, coming and going, almost as though they have a life of their own. As though they make up their minds to visit me, then leave. Like the last two weeks where I had a migraine every day for nine days. I was doing nothing different but my head seemed to… hate me. Anyway, I just try to deal with each day as it comes. But what has shifted more than anything is my personal assessment of where my life is. I’ve let go of a lot of anger and resentment. I had to go through the emotional work of it, grieve the loss of my old self. But in a strange way, I have come to see the illness as a gift; not a hindrance, not an enemy. It is what I needed in order to evolve. This has not resulted in me getting all better. There is a real possibility I could be sick the rest of my life. But that’s not the point. Although if that turns out to be the case, so be it. I’m learning it’s still entirely possible to live well, love well, and find peace–sick or not. It really isn’t up to me to judge these circumstances. It’s only up to me to persevere with what I have and what I am with grace and wisdom. The part of me that wants to call my set of circumstances unfair, unwise, unlucky, or stupid, is only pushing me further out into the ocean of despair. (Haha, ocean of despair. Yessss) I’ve never met a happy or successful person who was working against themselves, against the pulse of life. Everyone I’ve met who is joyous and successful has taken what they’ve been given, and put it to use, not tried to cast it away.

So that is how April 2012 is different from April 2011. In simpler metaphors, I’m like a crappy car. I have this somewhat dysfunctional body, but that is not so serious of an issue in terms of achieving my purpose. The soul is not heavily effected by external circumstances like these; the personality is. And making that distinction is important. Our bodies are just a vehicle. So, my body is like a car that can only go 10 miles at a time and frequently overheats and needs constant oil changes and runs out of gas quickly. But even 10 miles at a time, a car can still get to where it’s going.

We can’t all be Ferraris!

Health and Happiness, 10 Miles at a Time.

For the Loved Ones of the Sick Ones

Published on by Mary Gelpi17 Comments

List of Characters:

Gabe: Boyfriend, Likes to be doing things, Going places, Shooting things.

Mary: Girlfriend, Likes to lay around, Drink coffee, Talk about death.

Monty: Dog, Drinks out of toilet, Plays hard, Sleeps Hard.

There’s something sick people tend to forget sometimes, and this is that being sick isn’t only a struggle for us, but also tends to be a struggle for the people around us, too. It’s nobodies fault really, it’s just the reality of these circumstances. Spending the last month with Gabe, I saw how the illness effected more than just me, and the trouble it can stir up in our everyday relationships.

Gabe seems to me, limitless. It’s like he never tires. He can go and go and go and then he can go some more. Sometimes I tire just watching him. I envy his energy and resilience. He can only sit around for so long before he starts to go stir crazy, and that’s a huge fundamental difference between us. I don’t feel the need to be going places and doing things, and Gabe, well, does. “Do you want to go drive bumper cars today? Do you want to go to the shooting range? Do you want to go hit golf balls for a while? Do you want to go camping tonight? Do you want to get it on? Do you want to go jet-skiing? Do you want to go to an amusement park?” All of these questions are usually answered with somewhere between a grunt and a moan, sometimes a staunch “No” and sometimes a yawn and a “Maybe” if I’m feeling dangerous. Poor guy. How he ever ended up with a girl who barely moves I’ll never know. It’s easy to see how how he’d become disheartened.

It’s depressing, I know. The fact that an “amusement” park sounds like everything except amusing is depressing. But I’m just so used to the consequence of me saying “yes” to the normal activities that normal people find fun- and that is, a crash–that it has become my conditioned response to say no. I can’t drink anymore. I can’t be on my feet for long like I used to. I can’t stay up late or get up early. Sometimes a trip to the grocery store puts me over the edge and I pay for it. When you’re barely keeping your head above water, the slightest activites can drown you. So I’ve become conditioned to say no to a lot of things, simply because I know what will happen when I say yes, and often it’s more than I can handle. Sometimes I say screw it, I go and do what I want, knowing somewhere deep down that I’ll pay for it later. Every now and then, it’s worth the price I pay. But it’s rare. More times than not, I’m kicking myself for saying yes.

But as tired as I get in saying “No,” I see that it’s just as waring on Gabe in hearing “No.”  I’m so used to thinking “He’ll never understand what its like to be sick all the time” that I never considered that I’ll never understand what it’s like being healthy and dating a sickley. Especially one that shoots down your ideas of fun and takes up ample couch space. The truth is, if you’re going to be with someone who has this illness, you have to be independent and comfortable with leaving your loved one behind and doing the fun things without them. I know it seems incredibly depressing, but what is harder for a sick person, is trying to keep up with a healthy person. It just doesn’t work.

What’s also hard is the desire not to disappoint people. I hate the feeling of letting someone down, canceling on plans, or suggesting activities that only a 90 year old would be enthused about (How about we play scrabble again for the 90th time?) The problem is, no one else will say no for me. No one will suggest we stop and rest every thirty minutes. No one will make sure I’ve taken all my pills. No one will play lifeguard and see that I’m waring down and suggest we cut off the fun and go home. Only I will do these things. Which sort of turns me into the negative nancy of fun and activities for others. It’s exceptionally difficult to suggest to young, energetic, tireless twenty somethings that we wind down the day and lay on the couch and talk about life and existential questions. Doesn’t that sound GREAT?!?! To most people, no, it doesn’t. And that’s where the trouble lies.

This illness has strained many of my relationships- intimate, friendly, and familial. I remember once my brother and I had a shouting match outside an NYC restaurant because Nick wanted to go on a walk to digest his meal, but I was feeling especially fatigued and didn’t want to go. “It’s just a brisk walk! It’s good for you!” And he honestly thought it was, but I knew it wasn’t. I was at my physical limit that day, and a 5 block walk was out of the question. He stormed off on his walk in frustration and I taxied it home with discouragement. But I hadn’t really educated him on just how sensitive this illness was. I was sort of still trying to live like a normal person back then, so when the sickness would come out and demand  I obey it, it left everyone in a state of confusion. We’ve come a long way since then. Now I hear him defending me to others, even suggesting we cab it home when I consider walking. We’ve both learned a thing or two.

One question I ask is: Where do you draw the line? If I keep saying no to everything, won’t I eventually turn into a hermit trapped in a dark house with zero friends and zero fun? Because that sounds especially awesome. Wait no, that sounds terrible. The lesson for me has been finding the middle. Finding the area of compromise which keeps me alive with the pulse of life but doesn’t land me crashed in bed for 3 days. There is a middle ground, and part of my education in the last few months has been finding it. I’m still learning, too. In truth, it’s painful saying no all the time, when what you want to say is yes. But again, I have to be the master of my own domain! My domain happens to tire out after about 30 minutes of doing almost anything..standing too long, sitting too long, walking for too long…it’s ridiuclous, but it’s reality. And it doesn’t mean you have to turn off the fun. You just have to get creative. It’s also sort of a “Pick Your Poison” kind of situation. Do you want to say no and momentarily suffer sadness? Or say yes, and physically suffer for at least the next day?

Gabe and I are never going to be on the same level physically. This is someone who chased down rabbits on foot and wrestled an alligator on our first date (hence his nickname Gator) and worked 12 hour shifts of manual labor on an oil rig. (I’ll get to these stories, soon.) I..um…showered yesterday. So, there’s a little space between us when it comes to physical capablilites. But, we’re learning. I’m learning how to say no but stay positive. He’s learning to do the things he wants without me, and somewhere, in the grey of life, the circle of compromise, in the middle..we meet. All we can do is try.

To all the loved ones of sick ones out there, I know us sickley’s are a pain in the ass. But we do appreciate even the effort to understand. I see now, I need to try and understand, too.

Health, Happiness, and Compromise.

Who I Used to Be.

Published on by Mary Gelpi22 Comments

I dreamt last night I was back to my old tricks in gymnastics. For those who don’t know, I used to be a badass gymnast. I say that with pride because there are so very few things I really excel at, so I don’t feel cocky in admitting the one thing that I was truly gifted with as a kid. It came easy to me. I loved it. I didn’t care that practice was four hours a day every day during competitive season. I was so incredibly driven then, and I was nine  years old. Looking back on it now, it’s like that was some other version of me from a parallel universe. Here I am in bed, wondering if I’ll have the energy to shower today. I can’t believe I used to do acrobatics on a four inch beam. And it was my favorite event, the balance beam. It required such devout focus, but I loved how everything would fade away to a colorless blur in the background while performing on it. All that existed was four inches of felt and a nine year olds concentration. It was almost holy being up there. And it was so unassuming to look at. It was literally just a beam; four feet off the ground, waiting around for anyone who felt worthy to mount it; one slip and it was all over. I’d always considered it the most difficult out of all four events, but immediately it was my favorite. I felt most myself up there. Most alive.

See? Don't I look alive?

I was at the top of my game (both in gymnastics and in school) when I came down with the flu one ordinary spring day. I skipped practice, which I never did. Days with the flu turned into weeks, and I wasn’t getting any better. I was getting worse. Suddenly I began having headaches everyday, like clockwork. My muscles started aching for no reason. Sometimes my skin hurt to touch. In line at the grocery store, I felt too tired, too weak to stay standing, so I’d sit, on the dirty grocery store floor, my head in my hands. My homework began taking me an unwarranted amount of time to complete. At that time in third grade, we were being taught how to tell time. I remember looking at the clocks on the worksheet and the numbers not seeming in order. The questions about what time it was looked like they were written backwards. I’d reread them and reread them, slower and slower. I used to be incredibly quick. Always the first one done with in-class assignments. I grasped concepts easily and fast. Now words were scrambled, and so in order to answer a question, I first had to rearrange the words in proper order because my brain for some reason, liked to put all the words in a jar, shake it up, and spit them out in whatever sequence they fell in. This took completing things three times as long. Not to mention my pounding head didn’t like to read things when it hurt. None of it made a lot of sense. Even looking back on it is a blur. But we went to a few different doctors who couldn’t find the answers. My mom said she was cringing in silence because I was showing all the symptoms that she had when first becoming ill in the 80’s. She didn’t say anything for a while, but after months of being sick and getting progressively worse, she knew it was what she feared.

I was basically home-schooled by my mom for the remainder of third grade. I spent a lot of time in bed. It was a strange time. But after four or five months of the “flu,” I slowly began to get better. I wanted so badly to get back to my routine. I wanted to be a kid again. But what I really wanted was to get back to gymnastics. Finally after a very very long hiatus, I slowly eased back into it. My teammates and coaches all welcomed me back and I was thrilled to be doing what I loved again. But, of course, things had changed. I still had all the skills in me that I’d acquired since age 5, but my body wasn’t as resilient as it used to be. I’d be unnecessarily sore for days. I tired out easily in the middle of practice. Out of nowhere, the back of my heels started delivering sharp pain when I walked. I thought it’d go away but didn’t. At the orthopedic doctor, I was diagnosed with calcaneal bursitis. Some big word for my ten year old mind that meant walking was going to be a bitch now. One day at practice, while jumping from the low bar to the high bar, my right hand slipped and I swung around, slamming my head into the metal beam which held up the bars. I knocked myself out for a few seconds and woke up on the floor with a few teammates and my favorite coach Steve crouched over me yelling my name and “What happened?! What happened?!” as though he were angry or something. Of course, he was just worried. The E.R. later diagnosed me with a concussion and told me to take it easy for a few days. I had an enormous goose egg on my head and a scab on my nose. I brought that goose egg to show-and-tell the next week. My friends were impressed.

One by one, the signs revealed themselves that I wouldn’t be able to continue gymnastics. I felt like John Elway when he cried during his retirement speech and uttered “I can’t do it physically anymore, and that’s hard for me to say.” It sucked, because I was good at gymnastics, and not much else. I ended up “retiring” at the ripe old age of 11 and it was a terrible decision to have to make. I tried other sports and hobbies that weren’t as physically demanding, but I mostly sucked at them, and none compared to what gymnastics offered me.

It’s funny to think where I’d be had I not gotten sick and stuck with gymnastics. I showed a lot of potential. My coach Steve even pulled me aside one day and said if I stayed on track, I had a shot at Olympic tryouts for Salt Lake. It was probably something like a 1 in a million shot, but still, just him believing in me meant everything. Who knows where I’d be. But once again, the illness was making decisions in my life that I wouldn’t have made on my own. Similar to last year when I retired from my work at the gallery. I wouldn’t have made that choice on my own either. But sometimes I wonder if I was given this illness because the great designer of my life knew I wouldn’t make those choices on my own. I would only choose them out of necessity. And these choices, will bring me to exactly where I’m supposed to be. We have a tendency to think only we know whats best for us. And that was the root of my anger back at age 11 and more recently last year when I felt I wasn’t being dealt a fair hand. Periodically, usually in stillness, I feel the wisdom of something else at work in my life. When I start to trust that wisdom, my life isn’t so much something I own as it is an energy, a cause; a vehicle that I simply need to ride in (and enjoy) the paths shown to me, not get angry at the ones that didn’t materialize. Tolle puts it this way:

To complain is always nonacceptance of what is. It invariably carries an unconscious negative charge. When you complain, you make yourself into a victim. When you speak out, you are in power. So change the situation by taking action or by speaking out if necessary or possible; leave the situation or accept it. All else is madness.

So there you have it. No more whining about who I was, what I had. I need to stay present to who I am now. What I have now. And right now, I have some embarrassingly ridiculous gymnastic photos for your viewing pleasure…Feel free to point and laugh.

Health, Happiness, and Awesome 90’s Photos.

From Bed.

Published on by Mary Gelpi27 Comments

It’s with a general heaviness, random panting, irregular heartbeats, in and out of focused vision, an incredibly determined migraine, and somewhere around 2-3% energy that I write todays post; pale faced and slow moving. I said I’d write good bad or ugly, so here’s sticking to goals. I’m sitting up in bed, with the computer propped up on a pillow and pill wrappers and bottles skewed about the room. If you didn’t know any better, it’d be anyones guess what’s wrong with me. Aids? Cancer? Recreational Pill User? I don’t even say the name anymore when people ask. “I have health problems.” It’s surprising that people don’t follow up after you spill that general type of information. They usually nod and that’s the end of that.

Poor Monty. I always feel bad for him on days like today. It’s beautiful here. Sunny, cloudless. I hear the neighbors who are sitting out on their docked boat- they must have an awesomely hilarious guest over today because they keep erupting in this uproar of laughter and somehow, it helps. I like hearing it, even though it doesn’t involve me. Monty is wondering why we are indoors when the weather is what it is. And yet somehow he knows. He doesn’t insistently paw at me and make the whiny strange sounds of a dog trying to speak a humans language in an attempt to get me outside. He sees the signs and lays down next to the bed. I left the door open so he can come in and out as he desires but he stays in here next to me. What a friend.

As usual, I try to connect the dots. This is the fourth migraine this week and my medicine is running dangerously low. Insurance only pays for 9 tabs a month of Frova, (it’s a new one I’m trying) and I used up all the maxalt already. I ask the pharmacist how much 9 tabs of Frova is out of pocket and she clicks away on the keys and I wait for the damage. “Two hundred and thirty dollars,” she finally gets out. I laugh and she, sympathetically, laughs too. “Sorry.” “It’s OK.” But we both know it’s not really OK. It’s strange that a company decides how much medicine they’ll cover for you in a month, almost arbitrarily. It’s strange that someone who needs the benefits of insurance the most is often denied. Strange that the cost of healthcare under an insurance policy is of an affordable, negotiated rate and yet if you aren’t covered those rates are 200% more. That’s one way of saying it. Strange. I count my three remaining pills and send a prayer to the universe to let up on these train wrecks of migraines I’m getting. Most likely, I’ll have to dig in out of pocket again and feel that scary, hopelessness of watching my parents savings go to pills. I cringe when I think how much of it has already gone to medical expenses. Too much.

But there’s no sense in fearing it, in having anxiety over it. It’s our livelihood we’re talking about. “What’s the alternative?” my mom asked as we were going over finances before my visit to the CFS clinic in Miami last year. “Sit around and suffer endlessly while holding onto our savings?” The truth is, we’ve been rich and we’ve been poor. We, like so many families, have felt the sting of the placid economy in the last two years. My mom and I are unable to work, so my step-dad has been the only one bringing in income. And his workload has been lower than he’d like, but you do what you can. Today, we’ve got a roof over our heads, food on the table, and we have our damned pills. So no stressing about when the money runs out. My dad told my mom never to worry about this sort of thing. That she and the kids would always be provided for. And so far, he’s been right.

I know this sounds like a sob story of a post, and I don’t want it to be confused with a cry for help or plea for sympathy. It simply is the reality of this illness and day-to-day life. There are so many people out there who don’t have a parent’s couch to crash on, who don’t have their parents to pay for medical needs, and are forced to work fulltime–through the pain, exhaustion, and ache of this, and most of the time it’s silently, because no one really gets it. Telling your boss or co-workers you have “Chronic Fatigue Syndrome” doesn’t seem to go very far. Many times it worsens the pain from the sting of not being believed. When I told the owner of the gallery what I had, he suggested yoga, and I contemplated shooting myself. But once again, my point, is that you don’t have to be believed. Don’t make that your cause. They will or they won’t believe you. Only you can know what your battle consists of, and we live among so many who are fighting quiet battles of their own. We aren’t the only ones; far from it. You can only do you, and you can only do today. All I can tell you, like my mom tells me, is that there is so much research going on right now–More than there ever has been, and there is this tangible feeling of hope that comes to me at night sometimes that there is an end in sight. We will get there. So hang on.

Probably the rest of today will be like spent like this, in bed. Luckily I’m reading an incredibly good book (Freedom by Jonathan Franzen; if you’re couch or bed bound these days, or simply looking for a great read, I highly recommend it.) so I’ll have that to carry me. My migraine has finally subsided enough to where I should be able to read sentences and actually comprehend thoughts without wanting to vomit. His writing is incredible. It’s more than just a wonderfully told story, it feels like a literary education in itself. I underline all the words I don’t know in blue. I’m in love. Anyway, it’s time to rest some more. Which will be followed by more resting. And then possibly I’ll conjure up some energy and brush my teeth! May even get dressed! If I’m feeling really adventurous, I may even braid my hair! Nah, who am I kidding. I’m just going to read.

Health, Happiness, Bed Bound.

Let’s Talk About Death. Yeah!

Published on by Mary Gelpi21 Comments

Once again it is nighttime and everyone is sleeping, but me. This is often how I spend this time of night; listening to the in and out breaths of humans and/or dogs around me, and thinking about how everyone including me and including my dog, without hesitation, is going to die. I can never figure out why this thought drowns me at times. But sometimes it’s so incredibly real that I have to talk myself out of thinking about it. Like eternity. Like time and space. Sometimes it’s too much.

And other times, also mostly at night, I think about what an elephant in the room it is; that we’re all going to die, and nobody is talking about it. And if you try to talk about it, you’re either morbid or misunderstood, or both. And that doesn’t make the infringing feeling of The End feel any better. I think about death in many capacities, but mostly I think of it in my own terms. How will I die? How old will I be? How does my story end? These are all silly meaningless questions that I can’t know the answers to. So why are my dreams filled with me or Monty dying all the time? And why do I always stop at the obituaries section of the newspaper? I’m pretty sure that means I am morbid, and that’s been something I’ve insisted I’m not. Crap.

You know what happens when there’s an elephant in the room that nobody talks about? Well actually, I’ve never heard the answer to the proverbial question, but I think it goes something like: Eventually the elephant poops and everyone at the cocktail party is like “Hey!! There’s elephant poop in the middle of the living room!” and everyone freaks out and screams and before you  know it your guests have ruined their shoes and saying “We should have seen it coming.”  If they just would have  talked about the elephant in the first place, it wouldn’t be such a surprise coming across elephant poop in the living room! Get it? Human Death is the elephant poop in this analogy. Did I make that clear? I’m not very good at this. AM I. Anyway, I use that analogy because when someone hears about someone dying, it’s exceptionally hard to grasp the idea. It is sad. It is tragic. But no one ever says “Mary died today, and this was supposed to happen.” I hope someone says that on the day that I die. But what we say is “You’re kidding! It’s not right! It’s not fair!” As if we were ever promised to live forever. As if dying wasn’t a part of the deal the whole time. Funny how we act about that.

Maybe all this death talk is because I’ve been feeling so deathly lately. I was on a pretty good streak for a while there, I’d been doing better than normal. My energy level was up and my pain tolerable. As a result, I pushed myself a little bit over the edge so today when I softly blinked my eyes open around 7 AM my head was like GOOD MORNING YOU HAVE A MIGRAINE TODAY. And I was like, “Loud and clear. Thanks, head.” Not the best way to wake up, but once again modern medicine rescued me. Now I am migraine free, but wide awake and wondering if I should sketch out my funeral plans. OK, sorry, I’ll stop with the morbidity. But I’d like to let it be known, it doesn’t depress me to talk about death. In fact, it excites me. I don’t think you should sit around sulking all day. But I don’t think it should be avoided like it is. Once my brother Nick and I were talking about it, and he said “I mean, it’s gotta be a cool experience, right?” And I totally agree with that. Death has to be cool. But most people don’t wanna talk death with me. They wanna talk about birth control or facebook or Mitt Romney and sometimes while people are talking, the words “We’re all going to end up dead,” are circling around in my mind in one of those cartoon bubbles.  And I say these words with joy! I swear. It doesn’t make me sad. It’s just such an incredible mystery. Why aren’t we talking about it?! Can’t a girl just get a cup of coffee and have a light hearted conversation about life and dying and tentative funeral plans? Good grief.

I guess I am still working out my death issues. This is the part where I wish I saw an analyst so I could say “My analyst seems to believe I am going through a minor existential crisis as I confront my own mortality and begin to humbly accept that this life, while precious, is temporary.” But I don’t. Analysts are expensive. And my mom is pretty good in these areas. Anyway she says the death dreams are just my subconscious fears playing themselves out. I suppose it’s your basic fear of the unknown. Plus, its not like I’ve been able to ask any of the people I know who are dead to tell me about the whole dying thing. Wait, that is a really good idea. Why haven’t I asked all the dead people I know how the whole dying experience is?! Duh, I have so many sources! I’m going to say a little prayer tonight, ask for some answers, and hopefully stop thinking about the things that I cannot control and that I can’t know now. Everything in due time. Everything.

Health, Happiness, Elephant Poop.

 

Couch Crashing.

Published on by Mary Gelpi19 Comments

There is something I’ve become pretty good at over the last year that I would’ve never really expected, being a sick kid and all, and that thing is adaptability. Since giving up my apartment last March, I haven’t had a real home that I consider all mine since. All mine: that’s a phrase we humans love. I have jumped from house to house, state to state, with a small bulky suitcase and a bag full of pills for a solid year now. I’ve turned into a professional couch crasher. I have found that I encounter home in many places. That studio apartment that was all mine was just one of them. I remember cramming the last of my remaining boxes into my corolla and turning in my key to the landlord last year. It was a terribly sad day. Currently I’m writing from Tampa, Florida, nearly a year since that day, and I am suddenly feeling the freedom of not owning anything anymore. For so long I was trying desperately to keep everything I had, like a squirrel stumbling around hanging on to too many acorns, because they were all small symbols to me that my life was together and I was together and I could do it on my own. But finally letting those attachments go (and accepting what was true) has opened up a new freedom. Basically everything I need I can fit into this green bag I bought a couple of years ago. Except Monty of course, he doesn’t fit. But he made the 10 hour drive to Tampa, and is an incredible teacher of what it means to be adaptable. See?

I think he likes it here.
See?

I don’t know how long I will be here or where I will go next. At some point I plan to go to Colorado and stay with my grandma for a while. And at another point I’ll make it to New York because my brother and sister-in-law will be having their baby in a few weeks. I don’t have a distinct plan. Which is very much my style because about 95% of the plans I make do I ever follow through with anyway. So in this new style of life, I just sort of go where the wind takes me, and on my own terms. I am lucky to have such loving and welcoming people in my life who have all said in their own way “Sure, I have a couch you can sleep on.” Of course they don’t mean permanently and I never intend to stay forever, but there is sort of an unspoken agreement between me and my hosts: Stay until it’s time to go. Last year I spent two months in New York at Nick and Estee’s. (The soon to be parents) Then I spent a month in California at my sister and brother-in-laws house. Then a little time in Miami for Nick and Estee’s wedding. Then it was back to my parents house, and floating around on couches in New Orleans, recovering, writing, and living a non-traditional nomadic life. I have finally grown accustomed to living unplanned, undecided, and out of a suitcase.

I still look forward to the day when things are settled down, when I finally have a home base, and when I can answer this question a little more easily: “And so what do you do, Mary?” I love that question. And by love I mean despise. How does someone like me begin to even remotely answer that question? Usually I say “Oh, I live with my parents and yell at the TV when they watch Bill O’Reilly. Sometimes I take showers. What do you do?” I think now I have a better answer. I’m a nomad. But instead of wondering in fields, I crash on couches. At this point, it actually does feel like my vocation. Like I’ve been called to wonder around the world for a while, and figure out how to live well even though I’m not. It’s certainly been a learning experience, but I know I still have a long way to go. Like my mom always says, Just do today. Today I’m in Tampa, it is sunny and warm and Monty is fetching sticks in the bay. Somehow after the journey here, I still haven’t crashed. I woke up with a pretty killer migraine this morning but the medicine took care of it and I don’t have that typical Feel-like-I’ve-Been-Hit-By-A-Truck-In-the-Face feeling. So I am grateful for that, and trying not to harp on it for long. Sometimes I fear if I think too much about it the good feeling will go. So I’m not questioning it, I am just grateful.

I think more than any physical place, my notebooks have been my home. Writing often reveals to me what is true and real before my own mind can recognize it in the world. I know that writing is a way for me to find truth and tell the truth. It might be why I get anxiety just before I sit down to write, but after I finish, I feel better. Lighter. And if I’ve written correctly, I always walk away with more clarity, more light in the room than before. So I won’t concern myself too much with what house I call mine for now. Maybe home is more an internal thing than anything else. For the time being, home is on paper, and deep within.

Health, Happiness and Nomadic Tendencies.

Sunday Funday

Published on by Mary Gelpi21 Comments

I wrote a thousand different things in the last few days. I don’t like any of it. So I tried my creativity in the medium of film. Enjoy…

 

 

Community College Dropout

Published on by Mary Gelpi27 Comments

It’s a beautiful thing to wake up and believe that you’re exactly in the place that you need to be. Even if it’s not the place you plan on staying. For me, figuring out where to go or what to pursue next has always heavily involved where not to go and what not to do next. I’ve made some decisions in the recent two months that go in a very opposite direction from what I had planned. You know what they say: Man Plans, God Laughs. I suppose this is my official (and late) letter of resignation to Delgado Community College. Unless of course the writing doesn’t work out, in which case I’ll need Anatomy and Physiology II in the Fall and in the afternoon, please.

Bye Bye Delgado. It's Been Real.

I’m often surprised how hard it is for me to admit that I am sick. All my friends would tell you differently because they’ve all heard me say a million times “Sorry can’t make it. Feel like death again,” or something similar and I operate an entire blog centered around my stupid health! But it hasn’t always been this way. And in my instances of pain I have no hesitation in admitting that I feel awful and to just go ahead and count me out of whatever activity they’re planning. But for some reason, in a larger context, in the long term, I’ve never really considered myself sick or disabled or incapable. That’s why when my best friend Jess and I talked about nursing school this summer, I jumped on board immediately. I was feeling better, (as in, I could walk with ease now) and I wanted to be working towards something. This was in July so I had been away from my job since February and was really feeling the void of not doing anything. I was writing, true, but no one takes a jobless “writer” seriously. I didn’t even take myself seriously! Everyone is writing a book. Everyone has a brother in a band.

Anyway, I have always had a passion for nursing. My mom was a nurse, and since I was young I would dress up in her lab coat, wear the stethoscope around my neck, and walk around the house pretending to conduct my highly important work of tending to the sick. I’d also beg people to let me give them an exam, which usually ended up in me asking my Grandma questions like “And how often do you take fiber?” and listening to our dog Bacchus’s heartbeat. When it came to choosing a major in college, I chose Journalism for two reasons. 1. I’m an inherently curious person and 2. It came easy. My writing classes were easy A’s for me. Math and science meant a lot more work on my part. So I chose what came natural, and that was the right decision.

But now this nursing idea was popping up again, so I jumped on board. It was something I had interest in anyway, and I only needed a few pre-reqs in order to be admitted, so I went for it. I signed up for 3 classes, passed the entrance exam, and decided to start a silly blog to accompany me on my sickly journey to nursedom. Oh how the tides would turn. Funny that I didn’t really stop and consider that the whole reason I even had time to consider going back to school was because I was sick and physically unable to keep up with the pace of the rest of the world. Nope..never thought of that…

Even after the blog went viral and other opportunities began presenting themselves, I finally sat down one morning and really thought about nursing school. I started thinking about how I handled my three classes at Community College. Usually, I went, so that was a start and my grades were fine. But nursing school is very intensive. Sometimes the hours are very long and I don’t think it’s one of those jobs that would be very forgiving about me calling in once a week or letting me come in late when I had a migraine. I know a few people attending nursing school now, and when I would see them after a full day and how tired they were, I knew deep down I wouldn’t be able to do it physically. Didn’t I know that before? And yet something made me go after it in August. Unfortunately I think it was ego. Something in me wanted to prove I could do what other people could do. I could be normal. And if I couldn’t make it through, I’d just give up. And that’s not really a responsible or wise decision on my part, but since it only began with 3 classes, I think those near and dear to me wished me luck and quietly thought ‘What the hell is that girl doing? She can’t even prepare her own meals!’ It was also not a wise decision because it was this kind of thinking that kept me at a job so long that I was incapable of keeping up with. It was ruining any shot at me getting better, and this would have done the same.

Luckily, I didn’t get far enough into nursing school to have to quit or give up halfway through. Three days before my last final, the blog went viral and new, more feasible opportunities presented themselves under the same heading: Writing. Remember? The thing you’re decent at and enjoy doing that comes naturally and doesn’t require you to use your feeble little body? DUH. Like Nepo says “When we stop struggling, we float.” Once I stopped trying to prove what I could do, I stopped having to try so hard, and was left with the gift I had all along.

What I’ve been considering lately is that my motive for going into nursing in the first place was very basic: to help sick people. And somehow, now, I am inadvertently given that same opportunity, just through different means; my words. I’ve received quite a number of emails from people with many types of health issues who say this site helps them feel less alone and less crazy, and makes them laugh, too. It’s a beautiful gift to be able to reach people that way. The internet rocks. It’s like I’m an internet nurse!

So I’d like to say thank you to everyone who has written, commented, or laughed, and to everyone who has found comfort, hope, or joy here. One of the biggest realizations I’ve had in all of this is that it’s entirely possible to be sick and still laugh, love, dance, and have a happy life. So don’t ever start becoming comfortable with the perspective that you’re sick and being sick sucks and thus, you’re life is going to suck. Being sick does suck, but you’re life doesn’t have to. Mine isn’t completely where I’d like it to be, but  it’s getting there, and I believe more than ever in the prospect of true happiness. This realization is of course coming after a year of a lot of mental and physical pain and breakdowns and loss and lessons. But hopefully it can offer some comfort to anyone out there without them having to go through a year of pain and breakdowns and loss. Tolle says this: “I am not what has happened to me, I am what I choose to become.” I think I know what I’m meant to do now.

Health, Happiness, and Mom I’ll Pay You Back for That Semester at Community College Soon I Promise.

15 Things We Should Consider Not Posting On Facebook Anymore

Published on by Mary Gelpi104 Comments

1. How many centimeters dilated you are. Although it’s been fun following every day of your pregnancy, this is something we never need to know. Ever. EVER. Hang on I just started my period I’ll be right back.

2. You’re moving out so you’re giving away free shit. It’s nice and everything, but most likely  no one will want your shit stained area rug or couch, even if it is free.

We're giving this couch away for free yall!

3. Picture of your baby in front of raisins. Picture of your baby picking up the raisins. Picture of your baby putting the raisins in his mouth. Picture of your baby chewing the raisins. Picture of your baby in front of a plate that used to have all the raisins he ate on it.

4. How much studying you have to do and how busy you are. You sure? Cause you’ve been commenting on my albums from 3 years ago for like, a few hours now.

5. Extensive details about your workout and the 10K you’re prepping for. I can play that game too! Walked to the bathroom. Walked to the living room. Pressed power button on computer. Typed on keys quickly without taking any breaks. I’m up to 75 words per minute baby!

6. A picture of the flowers your boyfriend gave you. Why are you thanking us? We didn’t give you the flowers.

Sorry ladies, he's taken.

7. Checking in at a place and tagging all of the people you’re with. Why don’t you just…talk to the people you’re with? Or play an actual game of tag?

8.Telling everyone how drunk you are or are going to get tonight. Don’t worry, we’ll be able to tell by the pictures you post tomorrow.

9. Stop having public Facebook birthdays. It makes stalking you sooo much less interesting.

10. Your weird urban-infused engagement photos. Although I’m totally addicted to looking at them, I don’t know when or why it became trendy to dress really nice and take photos in gutters.

"Love the background in this one! So artsy!!!"

11. A picture of yourself, taken by you, liked by you, and commented on by you. That’s so narcissistic. Facebook is supposed to be about…wait never mind that’s totally appropriate.

12. Another post shit-talking the Kardashians. You watch ’em? You love ’em.

13. Status updates about how sick you are. No one cares about your stupid chronic illness!

Ugh, my fibromyalgia is acting up.

14.  Pictures of inanimate objects with your hipstamatic photo app. Yeah we get it, even a picture of a lamp will look cool under that filter. But it’s still just a lamp bro!

Congrats on getting stoned and deciding you're a photographer now.

15. Any variation of this phrase: “Today is the day that I marry my best friend.” Shouldn’t you be like, preparing to lose your V card?!

 

Health, Happiness, and Glorious Glorious Facebook.

 

 

Photocredits:

Weird Urban Engagement Photos: greenweddingshoes.com

Shit Stained Couch: uglyhousephotos.com

 

Benefits With Friends.

Published on by Mary Gelpi14 Comments

Let me begin by saying that the title of this post has very little to do with the content of this post, but the name came to me last night before sleep and I thought ‘What an awesome title!’ What I will really use the name for, one day, is a benefit I will have in honor of sick people and underfunded, under-researched diseases that hopefully I will be capable of donating millions of dollars to. Then we’ll take those fancy photos that show up in the “Out and About” part of the newspaper with sparkly dresses and older men with younger women and really, really, white teeth. Maybe next year.

I am sitting in the office at my moms. Correction, laying. Sitting up is difficult at this point because I am in the middle of a full blown crash. Not sure if I overdid it in New York or what happened exactly but my body is angry at me. It’s like, giving me the silent treatment by not giving me strength to walk or shower and making all my muscles hurt; under my fingertips too. It’s a particular but non-specific pain when my body gets like this. Just a general “bone-aching” but I always know when it’s happening because underneath my fingertips hurt. Very weird. Anyway, I am lucky, because I am home and under the care of Doctor Mom and not having to worry about calling into work, fashioning an excuse that will translate to a boss who never took a sick day.

This morning I sludged from my room to the office, my wrists quivering at the weight of my computer and my eyes not quite in focus yet. I took my first set of pills and waited for the pain to ease and my brain to start functioning. Take pills and wait. If there were an instructional guide on How to be Mary Gelpi, those two steps would be peppered throughout. My mom is sharing with me the symbolism of boats and chocolate and pies because I told her about my dream last night, which involved the family and me getting in a boat accident, where no one died and the whole thing was surprisingly peaceful- and the night before where I dreamed that Nick, my mom and I were at a lake house and my mom and I were gathering golden apples to make pie and Nick was fishing, as usual. It was a nice departure from my typical high-anxiety dreams where either I’m dying or watching someone else, like Monty, die. These last few were calm, so she is helping me process them. One of the perks of living at home: Coffee ready when I wake up, and a personalized dream-interpreter on staff. Score.

I’ve had a to-do list for days now that I can’t wait to get started on, yet I’m just unable to begin. Yesterday I spent the entire day in bed. Every few hours I’d wake up drenched in sweat, in pain, re-dose the meds, and go back to sleep. It’s a funny way to spend your day like that. Because by the time I “woke up” it was dark outside and Monty came in from a day spent frolicking in our yard and playing soccer by himself. Poor thing. I owe him a few games when I perk up. But I barely saw the sun, which is depressing. But that’s how crash days go, and I remind myself that it won’t last. In a few days, after successfully doing nothing, I’ll start to feel better. The nice part is,  the sun will be waiting for me when I’m ready. Monty and the sun– they hold nothing against me. For that I am lucky!

I think the biggest teacher of this illness has been learning how to exist in the “chaos.” I’m often eager to jump into things…even boring things, like laundry. But I’ve had to learn how to let my toenail polish stayed chipped until I have energy to fix it. Let my laundry pile up until I have energy to do it. Let my phone ring without me answering it until I have energy to talk. There is something uncomfortable about letting things “go” that you want to tackle head on. For instance right now, I’d love to unpack my suitcase and do laundry. I’d also love to call my sister and catch up, write a few thank you notes and send them, clean my car, and oh yeah, SHOWER, but all of that will have to wait. And truthfully, many of the things we think can’t wait, can. No-one ever died from going one more day without showering. Well not that I know of. It’s a lesson I continually learn and relearn, but it’s valuable to see that, while I’d love to dive into these things, I cannot. They will simply have to wait. And I need to learn how to maintain in the grey of things–life between the trapeze swings. Just as the sun will be waiting for me, so will everything on the to-do list. Anyway, the computer needs to re-charge and so do I. I’m tired and weak and am going back to the underworld. I’ll see you when I re-emerge.

Health, Happiness, and Undone To-Do Lists

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An Experiment.

Published on by Mary Gelpi44 Comments

*Contrary to feeling like death right now, I’m going to try an experiment. Here goes. 

I woke up this morning and I felt great!! I had so much energy, I didn’t know what to do with myself. So I began by taking a six-mile run and watching the sun come up. It was beautiful! The birds were chirping and the sun coming up over the horizon allowed me to see the true beauty of nature in the world. By the sixth mile, even Monty could barely keep up with me! He’s so lazy sometimes. I need to get him into shape. I felt like I could’ve run forever.

When I got home I cooked up a great breakfast. Cage free scrambled eggs with soy milk, a fresh fruit salad, and a protein shake. It’s my favorite breakfast. I read the paper and shook my head at the state of the world. We really need to get our shit together. By the end of breakfast it was already 7:30! The day was really flying by. Monty took a nap and I told him he better shape up or ship out! No more doggie treats for him. He’s gained weight!

Next I organized three closets in my house. Boy did they need it! I color coded and alphabetized all the things I was giving to good will, and even sorted the things within the boxes into subcategories (kitchen appliances, tools, decorative things, shitty Christmas presents still in their packages, etc.) By the end of all that closet organizing, I found myself sneezing a lot. Ugh, so annoying. Allergies are the worst! But, I didn’t take ANY pills! You know what I did? Vacuumed my entire house. Then I went to the Sharper Image and bought one of those air purifiers. Since it was only 9 am the mall was virtually empty, so I did a little shopping for myself. A girl CAN’T have too many shoes, right? Girls out there, you know what I’m sayin’!

When I came home I took a wet rag and wiped down all the surfaces in my house, including furniture surfaces, baseboards, fan-tops, and counter tops. Then I made some herbal tea my best friend Sally gave me a while ago, which is supposed to help prevent cancer and is known to be good for allergies. By now it was 10:30.

Next I went outside and tended to my garden. I’m growing a bunch of root vegetables as well as tomatoes, squash, lettuce, and South African JuJu beans. I did some weed-eating and general maintenance. I even hand painted a sign out of some old wood in our shed that said “Mary’s Garden.” It looks great. Sometimes I think I should have been a painter. Next I went inside, hand-washed all the vegetables that were ripe from the garden, and made an incredible home-grown salad. But you know what’s even better than home-grown salads? Home-grown salads with friends!

DON'T worry. It's organic.

So I called up my besties, Sally, Cindy, SueSue and Peggy. Well, I know that’s only four, but I didn’t have enough veggies for ALL of my friends (too many to count) so I only invited those four. I love my friends. I have so many of them. And they all love home-grown salads! We talked about Chloe Kardashians new hair color (ew) and the crappy state of the world and how somebody really needs to do something about that. Sally and Cindy then had to go to their Jazzercise class but SueSue and Peggy were free so we all went to my favorite salon, got mani-pedis, and drank bubble tea! I’ve been feeling edgy lately so I painted my toenails dark purple. I’m so crazy sometimes!!!

By the afternoon I rode my bike to the farmers market to pick up fresh gluten-free bread and some other things that I can’t grow on my own. (One day!) I also bought some beautiful tulips that were being sold there. I decided they were too beautiful for any old vase, so I biked to a glass-blowing studio down the street to create my very own one-of-a-kind vase for them. Sorry, but none of the other vases would do! They’re sitting on my table now, and may I just say..DAMN. Pardon my french. Next it was time to make an appearance at an engagement party for one of my other besties and I wore my new 4 inch heels with my new dress. I also had the perfect set of hand-made earrings (made by yours truly) which couldn’t have matched any better. Not to toot my own horn, but, BEEP BEEP I was looking good! We drank wine, ate wonderful food, and it felt really good to stand around and talk to people about what they’re doing with their lives, tell them about mine, and then make tentative plans to get coffee and stay in better touch. It’s gonna be a busy social season guys, get ready!

Finally by 10:30 I was ready to leave.  Call me a dork, but I love to get in my jammies and watch reruns of the West Wing before bed! (Rob Lowe, so hot. Don’t get me started.) Anyway I finally made it home, saw the tulips on the table, and remembered how precious life is. I have a great life. But boy am I sleepy! Tomorrow I have Hot Yoga at 4 am, so I better get some rest. Can’t wait to see what tomorrow has in store!!

HEALTH, ENERGY, AND BUBBLE TEA!

Mare

**Just to reiterate, this was all made up. I’ve been crashed the last few days.  This was just an imaginative experiment in pretending. If I tried to go on an actual six-mile run I would vomit then die.