Category: Migraines

Miami, Migraines, Diners, Doctors

Published on by Mary Gelpi5 Comments

I am sitting at a booth in one of those themed diners in a shopping center, adjacent to the clinic where I saw the specialist on Monday and had what looked like hundreds of vials of blood taken today for more testing. I figure I should eat even though I’ve no appetite. I never trust a menu this long, so I play it safe and order the soup and salad, which is neither good or bad. I guess that’s what you’re really asking for, a meal to quickly forget.

mp,550x550,gloss,ffffff,t-3.3u2.jpgThe music is too loud in here and I find myself strangely annoyed with the gimmicky decor. License plate style plaques fill every inch of wall space boasting phrases like “Stressed is Dessert spelled backwards!” and “Soup of the Day: Whiskey.” I stop. I just close my eyes a minute. Adjust. The problem is not the restaurant. It’s me and this body I have to animate—it doesn’t fit in the world in comfortable or easy ways. It’s like dropping a wild tiger in suburbia, except maybe the opposite. It’s like trying to build suburbia in the middle of a jungle, then complaining the tigers are noisy and sometimes scare the kids. No one else seems bothered by the music.

mp,550x550,gloss,ffffff,t-2.3u2.jpg
“Hey, you don’t belong here.”
“I might say the same thing about you.”

I don’t want to be this young and think like a curmudgeon. Better to let go. It’s because it’s 11:30 and I’m on day 9 of a migraine cycle and I’m wearing real pants. I had to get blood drawn and I don’t normally exist before noon. Mornings are just constantly, reliably painful and tough.

Everyone has days where life feels so tired, so repetitive, that you want to hit snooze and wake up under some alternate sky where there is no weight to carry. No gravity, no effort required to move. Where everyone looks each other in the eyes. We listen. We don’t say the words “Sorry” followed by the word “but…” or “if”. Our hearts resonate with each other, and our heavy bodies have shed like snake skin, like the useless, heavy weight they’d become. There is a lightness in every capacity.

Tolle says this alternate side of the sky I am referring to is possible here on this side. And I believe he is right. But it takes so much practice and learning and presence. Presence. How easy it is to walk into a cheap diner and complain about decor. ap,550x550,12x16,1,transparent,t.u2.pngThat kind of observation lacks creativity. Not to mention, it’s very counterproductive to complain about these things when you’re already feeling down. So I’ll tell you what I like about this costumed diner. All four booths in my vicinity are filled with at least parties of two people eating, and all of them are talking to one another. None of them have their phones out. A phenomenon! Particularly this couple across from me.

They are in their 60’s, and somehow it seems obvious they’ve known each other a long time. I could be wrong of course. They could be divorcees who met on ourtime.com and newly in love. But it’s not the sense I get. In my mind they’re in their Act III of their marriage with grandchildren they have pictures of on their phones to their friends at Bridge. I like that they haven’t run out of things to say or lost some kind of delight in the simple pleasure of each others laugh. They seem to laugh a lot, casually, throughout their light hearted conversation and this feels so good to watch. I always used to fear I’d marry a man and eventually he’d lose interest in me and I’d find his stories boring and then we’d be at a restaurant eating one day with nothing to say to one another. As though there was nothing new to discover about the other, or that we’d lose curiosity in the way each of us experienced the world.

But I know that only happens when we’ve decided we know a person completely and with total certainty. And if we’ve decided that, the issue is not the other person.”The human mind mistakes its opinions and viewpoints for truth…but it is no more than a viewpoint, one of many possible perspectives. Reality is a unified whole. Thinking fragments it into pieces.” Tolle says a lot about the “thinking” mind, and that it’s very useful in our world. But it’s also “very limiting when it takes over your life completely. It’s only a small aspect of the consciousness you are.”

Sometimes I seek the daily, thoughtless things about a person with such aggressive interest I think I might be dumb. Their calendars, notebooks, what they keep in their cars. One of my favorite hobbies is to take apart a guys wallet, piece by piece. All the useless receipts he saves. The frequent customer cards. An old crumbly picture, maybe. Movie stubs. Concert stubs. Their license—are they smiling in the picture or does it look like a mug shot? What made the cut for making it into the billfold and what didn’t. All tiny stamps of a person and his non-sequitor, paper trail of places he’s been. You can have the same fun or more going through a woman’s’ purse. Many clues in there. But these are little traces so few people see. Instead we go to dinner and say “Uh huh and what do you do? Oh interesting, tell me more about your boss. What a jerk!” I think first dates should be silent a exchange of wallet for wallet, or purse for purse, or wallet for purse, whatever. You get the picture.

My last boyfriends wallet, unless I’m remembering incorrectly, was a basic brown leather wallet that seemed to old for him and contained some concert stubs, because he was a music guy and not a whole lot else because he had a straightforward way of being in the world. A wallet was a thing to hold money and his license. But maybe more memorable was the night we went to dinner and left Monty and his dog Gracie home. When we returned, his wallet that he’d left on the coffee table had been chewed. His license, a credit card, social security card, and a one dollar bill perfectly torn in half littered the living room floor. We both loyally defended our own, claiming that “100%, my dog would never do that.” I thought it was kind of funny—a mystery we’d never know the answer to. Maybe it was Monty (it wasn’t), telling me Run! This thing isn’t gonna work! Mayday! Owell. Fun while it lasted. I still have the half chewed dollar.

I could say that the two buzzing gnats flying around my side salad are concerning, but you can basically always reduce these impulses to complain or feel disturbed by something or “talk to the manager” to nothing, because when you start to break them down, they just don’t mean all that much. We forget that so much of our devoted focus, particularly when it’s negative, is essentially meaningless. I am one person, and I chose to eat at a diner where children under the age of 12 eat for free between noon and 3. There may as well be a sign that says FREE BUGS. This isn’t the RITZ. The meal costs $10 and the waitress is nice.  If you’re always making noise about your tiny discontent, you just become a human gnat. We should ask ourselves what our questions or actions or statements are intended to do for five minutes before we go running to every manager. It’s so often just a thoughtless impulse. Gnats! We could just as easily forget about it and move on with the day.

I take an Uber home, and I find myself alone in the back of Ubers quite often. ‘Often’ is a relative term. I’m appreciating that the driver isn’t trying to engage in conversation. “It’s hot out!” “Yes, it is hot out! Also, I have a doggy!” I’ll tip him more for that.

Miami is a picturesque place, and I like the sidewalk traffic. Watching the world through 179389-3908867d8a204eebbcef4215613a5da0.jpeg  the window feels so much better than TV–and no commercials. Bonus! I see a couple kiss while they wait at the crosswalk. Then they smile and she says something that makes them laugh. I love seeing people kiss. Creepy? Maybe. I just like that kissing exists in general. There’s traffic, which is another easy thing to complain about. Tolle says complaining is one of the ego’s favorite hobbies. (Also being right.) But I’m in a quiet car. All I have to do is sit here, one of a few things where I’m actually quite skilled. Many beautiful things pass us by at a stop and go pace. I try to imprint the sights on my brain to take home with me.

I try presence. Just being aware of all my senses. I am grateful to be out in the world at all, when so often I am indoors. I try to remember how lucky I am that I was able to come here. What a gift it is to see a doctor who understands, who listens and looks you in the eye, who can help me find answers. (Thank you Dr. Klimas!) That I have my brother and his beautiful family to stay with and help care for me. That it’s time together we wouldn’t have had were I well. Yes, I have a body that feels like a decomposing pumpkin at times. And I actually feel I may look like a decomposing pumpkin at times. (See video below) But so many moments to be grateful for. So many gifts. Count them. Keep counting. They add up faster the more awake you are.

Keep fighting. Last year was hard. I believe somewhere in my depths, this one will be better, no matter the directional trend my health takes. I know we’re getting close. I tip the Uber driver and leave feedback. “Thank you for the quiet.”

Health, Happiness, Counting

All awesome artwork by Eugenia Loli

*Bonus*: I’m on Day 9 of my migraine cycle! Here is a clip of yesterday morning. It was kind funny in that tragically comical way.

The Chronic Fatigue Syndrome Song. Hot Off the Street.

Published on by Mary Gelpi4 Comments

Since I have a large amount of free time, I started writing a song about ME/CFS. I called it “The Myalgic Encephalomyelitis But For Our Purposes the Chronic Fatigue Syndrome Song.” Slides right off the tongue right? I told myself if we hit 40,000 signatures, I’d post the song and lighten things up a bit. There’s not much humor in chronic disease talk or advocacy, but I think we could all use some. So, 40,000 signatures later..here we are. A few things.

But first, sign the danged petition. Did you sign it? Just sign it. Did you? Click on the link and type your name. Did you do that? OK, well then do it now. I’ll wait. Sign it. You’ve signed it now? Great! I don’t have to keep saying it? I’ll stop. Cool. OK but so just to be clear you signed it right?  Thank you. I love you. https://www.change.org/p/increase-research-funding-for-me-cfs

1. I don’t claim to know how to play guitar. I learned six chords on it a few years ago and can fumble through a few songs, most of them by Taylor Swift as her songs consist of the same four chords. I love it. Anyway this is why my song is only two chords. Sorry.

2. Monty makes some background noise now and then that I was too tired to edit out. He was chewing on some toy the whole time I played. Then in the middle of verse 3 decides he wants to play tug of war. He’s never had great timing, and we’re working on that.

3. This is more of a philosophical thought in general that I had while writing the song–maybe all diseases should come with their own jingle? That way tragic news might be a tad easier to take. Like “hey hey hey, you’ve got cancer in you brain!” Or “Looks like you’ve got a case of GOUT, hey! But we can fix that, no DOUBT, hey!” More creative lyrically, but you get the idea.

4. I’m sure someone will comment that I don’t look sick. Understandable, and truthfully I have improved from how I was last November when it was challenging just to walk. But looks are deceiving and they call this disease invisible for a reason. All those pill bottles behind me are my own, that I’ve been haphazardly saving for the last 9 months or so. I’m wearing my pajamas but threw on a bra and some lipstick– you know, to be professional.

5. This song is for anyone who is sick, including those with chronic illness, and especially ME/CFS. I hope it makes you laugh or smile, because I know that being sick is a weight you carry around all the time, and it’s heavy and intense to deal with daily. Sometimes you just have to step back and laugh. So let’s have some fun.

But make no mistake, this took work and has a specific goal. Rhyming with adrenal insufficiency is no easy task!  I crashed week after week just trying to record it (I know, and it’s still poor quality) but I wanted it to be decent enough to make the rounds, maybe inform some people, make others laugh, and perhaps land on the desk of someone who can help us. You never know if you never try. I’m ready to fight for this as long as it takes, sick or well. So until we get the adequate funding, prepare for more creative/ridiculous forms of advocacy, and please help spread the word. Yall have been a huge help, keep it goin! Thanks again, and enjoy :)

Health, Happiness, and Disease Jingles

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.

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.

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.

Speaking of Death, Let’s Talk Birth.

Published on by Mary Gelpi13 Comments

Before I begin about birth, I have to share quickly a dream I had the other night, after I wrote the post about death. As I laid down to sleep, I sent a little prayer to the universe. A prayer to help me not be afraid of death or the unknown. Since I happen to know a lot of people on “the other side” I asked them to show me, give me a little hint of what dying was like, in hopes it would calm my fear about it. I fantasized about having a dream in which my dad took me through the stages of death and we ended up at the end, at the gates, where all I felt was love and happiness and I most defnitely did not feel pain or sorrow, and I would wake up reassured. Maybe he’d show me what it looked like. Maybe he’d even tell me how I’d go. And in my morbid little mind, that would be a fun dream. After dying so many ways in my dreams for years, I’ve become somewhat desensitized on the matter. Well that and experiencing death at such proximity at the age of 12. What I’m getting to, however, is that I did not have a dream like this. In fact, I hardly remembered any of my dreams from the night before, which for me is unusual. But there was one dream–if you can even call it that. It was more like a very short “scene” I was in. I was crouched down under some flat rocks. I don’t remember being alone but I don’t remember who accompanied me. Above us, over the flat rocks, was a stampede of rhinoceroses, running full force and I could hear the pitter patter of their feet and watched as little tiny rocks spilled into the hole in which I was huddled in. That’s it. I remember knowing in the dream that this was my answer from the other side, and sort of chuckling about it. I’ve never heard anyone relate death or the afterlife to a rhinoceros stampede, but the subconscious works in symbols, not plots. So I’ll have to get my mom to help analyze this one. It was still fun to at least feel like someone or something had heard that prayer I sent. Ask and you shall receive.

But enough about death for now. Today wasn’t filled with thoughts about death and the end and the sometimes mentally paralyzing mystery of life. Today, I thought about life and beginnings. Last night, I had a dream that my brother Nick sent me a text message which read “It’s miraculous. It’s real.” Somehow in the dream I knew that he meant his wife was going into labor. When my eyes opened this morning around 9:30 to yet another killer migraine, I picked up my phone to see a text message from Nick. “Estee’s water broke.” I smiled with relief. Finally, she was going to be here, and I was going to be an aunt for the second time. No more talking about the baby in future tense, no more guessing who’d she look like and whether she’d have Estees genes and be on time or Nick’s genes and be late for everything. She was going to be here in physical form now. She was going to be her own governing self.

As much as death mystifies me, the process of conception, pregnancy, and labor mystify me just the same, if not more. I remember learning in anatomy class many of the things that have to go right in order to conceive and carry a child. Once hearing them, the idea of it all sounds impossible. And yet, we do it. It is natural somehow. Nick’s text message in my dream is just how I feel about all of it; that it’s miraculous.

Welcome to the World.

At 6:41 this evening, I received the first photo of her. 8.2 pounds. “Say hello to Olive Marie Gelpi,” it said. I stared and became a little lost in the photo. She has these big cheeks and beautiful hair and looks excessively calm. Something about a new life inspires even old souls; looking at the photo I felt this strong sensation that humans are the most capable creatures on the planet. Here Olive is only a few hours old, and already her path is being built. The energy is changing. I’m not even her parent, but here I am gazing at this photo and thinking of all the things she can do. I want to tell her that too–that she can do anything, Like some cliche high school year book signature. Dear Olive, Reach for your dreams! You can do anything! But these were the feelings popping up in me. Mostly I just feel happy she made it. 10 fingers and 10 toes as they say. Baby and mom doing well as they also say. The most beautiful part of today, is that a child was brought into the world first to two parents who want her and love her, unconditionally. Just for showing up, they love her. This is a good start. And then to two sets of grandparents who love her and will inevitably spoil the crap out of her and show her that she matters. And then to three aunts and two uncles who will tease her to toughen her and help raise her in every way we know how. If it takes a village to raise a child, I’d say she has a pretty good start. Today I’m not thinking about sickness and death. Today I’m thinking of human possibility and what we’re capable of. And it suddenly feels like a lot.

Happy Birthday Miss Olive Marie. I can’t wait to see who you are and what you will do.

Health, Happiness, Possibility.

The Office

Published on by Mary GelpiLeave a comment

There is a room in my mom’s house called ‘the office.’ When I was really sick in January and February I spent most of my time here. It’s a small square room that has two walls of windows, a bible on the window sill, and a few shelves of books about botany and psychology and other things I know very little about. I feel a connection to this room and it’s always been my favorite place in the house. Sometimes I feel I could sit by this window, watch the birds flirt and the trees flutter and not leave for a couple of years. I would think I would grow tired of this room because I spent so many depressing sick days here in the winter, just wishing to feel better, waiting to get back into the world. I was certainly not a part of the world then. Or it didn’t feel like I was. But somehow I still love this room. It’s the first place I go in the morning. It’s probably the windows. I’m always drawn to them. I make my coffee, take my pills, and sit for as long as I can– Until the phone rings or someone walks in the door or Monty paws at me to go outside. I don’t play music or have a TV on. It’s just quiet and it’s really nice.

See? Nice.

This morning started in a peculiar way. First I woke up with a killer migraine at 6 (that’s not the peculiar part.) I took my meds and went back to sleep. At around 9 I woke up to an intense knock at the door. Someone who was knocking with PURPOSE or anger or both. Since it takes me like 10 years to get my bearings in the morning there were a few rounds of purposeful knocks before I made it to the door. When I got there no one was at the door anymore so I walked down the porch steps to see a Sheriffs car outside. My first thought: Fuck, my stepdad died. OK so I may have a little PTSD because last time a sheriff called our house it was to tell my mom her husband had died. The truth of the matter is, I prepare myself for news like that all the time. It was just some idle Tuesday that my mom called barely able to get the words out through her tears that Roger had died in his hotel room the night before. He had some kind of heart attack in his sleep. After you get news like that, the fear or the readiness to receive traumatic news follows you everywhere. So back to the sheriffs car: Fuck, Marc died. The guys face was so solemn and serious, I clenched my hands and prepared for the worst. “Hi ma’mm, is Marc home?” PHEW! MARC WAS ALIVE! He may be going to jail but nonetheless, alive! Anyway it turned out to be no big deal. There is this neighbor near us with a dog that keeps running onto our property and barks all day long blah blah blah, Marc left them a note, and for some reason they called the sheriff to make sure we weren’t going to kill them or something. I don’t know. I went back inside after I discovered no one had died and no one was going to jail. So that was 9 am.

After that my mom and I were up and my migraine was still trying so I took another dose of meds and drank coffee and talked with her about dreams, death, life, all the goodies. I love waking up this way. (To coffee and philosophy, not migraines and cops) I could sit and drink coffee and talk about life and death all day long and be perfectly content. We were talking about my dad and my mom said “I think the best part of the experience with your dad is that he not only showed you how to live, he showed you how to die.” And she was right. My dad did both with ease, honesty, pureness and beauty. I only had him for 12 years, but it’s incredible with how much he left me with.

I guess I need to get back to errands and studying and emails and the junk that clouds up our days. Anyway it’s been an eventful morning, but Marc is here, having a business meeting with my mom, and I’m in the office watching the birds and the trees from my favorite spot. Not too bad.

Health Happiness and No More Dead Dads! :)