Hello and ho ho ho. I am doing well!
I worked my full 30 hours last week! I haven't had to use my cane in 6 days! I'm not perfect, but I'm doing SO much better than before. Greatest Christmas present is my (relative) health. Praying and knocking on wood that it will last!
Hard to believe we're entering a new decade in just a matter of days. To the '20s!
et
Thursday, December 26, 2019
Tuesday, December 17, 2019
Thirst
I am doing ok. Been able to go to work the last couple days, but still struggling with screens and lights being very bright at times. Just trying to take regular breaks and rest my eyes during my evenings/weekends too.
The thing about POTS is that it comes with a whole host of weird symptoms that may change over time. In the last few days I've developed an unspeakable, insatiable thirst. It doesn't matter how many glasses of water I chug, how many cups of coffee or juice or tea or whatever - I am perpetually thirsty. I will wake up in the middle of the night completely parched. And so I drink and drink and drink (and pee and pee)...
I'm trying to think of a metaphor for this strange symptom. It's just totally consuming. I think my brain is sounding the alarm like around the clock that I'm dangerously dehydrated. It doesn't make sense to me.
I am tired and, surprise, thirsty. Good night.
Later days!
et
The thing about POTS is that it comes with a whole host of weird symptoms that may change over time. In the last few days I've developed an unspeakable, insatiable thirst. It doesn't matter how many glasses of water I chug, how many cups of coffee or juice or tea or whatever - I am perpetually thirsty. I will wake up in the middle of the night completely parched. And so I drink and drink and drink (and pee and pee)...
I'm trying to think of a metaphor for this strange symptom. It's just totally consuming. I think my brain is sounding the alarm like around the clock that I'm dangerously dehydrated. It doesn't make sense to me.
I am tired and, surprise, thirsty. Good night.
Later days!
et
Friday, December 13, 2019
"Crushin' It"
I did it! I made it to the weekend! My legs are like jelly! I am sore but happy!
I am excited because holiday decorations are up in my office. Feeling festive. I even found some cute window clings (in the depths of the supply closet) to put on our cubicles! Good cheer all around.
Due to some changes in staffing, I finally had the opportunity to move back to a desk in the ops hub after being the lone operations person stationed in the accounting department for the last 6-8 months. In ops I'm back surrounded by the people I work most closely with, including my department (customer service) and my bosses. One of my supervisors loves to ask how people are doing, and if they say they're doing well, he immediately follows up with, "Oh yeah? Crushin' it?!"
I look a bit different than I did 2 months ago when I began my leave of absence. I use a cane most of the time. I've put on some weight. Apparently my face and neck look puffy, as one co-worker told me when she asked if I was on steroids. (Adding to the list of things not to say to people!) But when my supervisor asked me today how I was doing, I immediately said I was crushin' it. I have gotten off the couch every day for the last 5 days in a row. That is good news indeed!
And now I will rest, rest, rest.
mittens!
et
I am excited because holiday decorations are up in my office. Feeling festive. I even found some cute window clings (in the depths of the supply closet) to put on our cubicles! Good cheer all around.
Due to some changes in staffing, I finally had the opportunity to move back to a desk in the ops hub after being the lone operations person stationed in the accounting department for the last 6-8 months. In ops I'm back surrounded by the people I work most closely with, including my department (customer service) and my bosses. One of my supervisors loves to ask how people are doing, and if they say they're doing well, he immediately follows up with, "Oh yeah? Crushin' it?!"
I look a bit different than I did 2 months ago when I began my leave of absence. I use a cane most of the time. I've put on some weight. Apparently my face and neck look puffy, as one co-worker told me when she asked if I was on steroids. (Adding to the list of things not to say to people!) But when my supervisor asked me today how I was doing, I immediately said I was crushin' it. I have gotten off the couch every day for the last 5 days in a row. That is good news indeed!
And now I will rest, rest, rest.
mittens!
et
Wednesday, December 11, 2019
Back at Work!
Saturday - good day
Sunday - didn't sleep. bad day.
Monday - ok day. Prayerfully decided it was time to give it a try to see if I could return to work.
Tuesday - First day back after being on leave for almost 2 months. Worked 3 hrs. Sore, eyes tired, but happy to be around people again! Hopeful.
Wednesday (today) - worked 5 hrs. I literally come home and crash on the couch with music and an eye pillow since I've been looking at bright screens all day. But I think I can make this work.
Will work 5 hrs/day for the remainder of the week and then return to my normal 30 hrs/wk (6 hrs/day M-F) beginning Monday. I'm exhausted just thinking about it. But with classes being done til February, I know I need to get off the couch if I can. Challenge myself to get stronger. Nights and weekends will be for resting my body, my mind, my eyes, my aching hands. I'm very blessed and grateful that my work is so close to where I live, so I don't have to worry about a long commute.
We'll see how I handle this week. I would love to be able to go back to church soon but am not holding my breath either (since it is at least 35 min drive one way on Sundays).
penguins dancing with candy canes,
et
Saturday, December 7, 2019
The Semester Is Ended!
Last paper has been turned in. Online classes finito. Hallelujah, amen.
I want to go back to work asap. Not sure if that's in the cards for me. Vision issues Thursday and Friday, and fatigue, and and and.
But today (Saturday) has been a good day! I cleaned the house! I sat up for much of the time I took for breaks between chores. Hooray! I am fantasizing about being well enough to go to church tomorrow? And/or work next week? We'll see how I feel tomorrow. Please please please. I haven't had a face-to-face interaction since... Monday? Good grief.
I love The Marvelous Mrs. Maisel. The dialogue is so fast (not surprising, from the creators of Gilmore Girls) that the closed captions can't keep up! Hysterical. I hope to watch all of the new season tomorrow. The costumes are gorgeous. The coats! The hats! Stunning.
"Thank you, and good night!"
et
I want to go back to work asap. Not sure if that's in the cards for me. Vision issues Thursday and Friday, and fatigue, and and and.
But today (Saturday) has been a good day! I cleaned the house! I sat up for much of the time I took for breaks between chores. Hooray! I am fantasizing about being well enough to go to church tomorrow? And/or work next week? We'll see how I feel tomorrow. Please please please. I haven't had a face-to-face interaction since... Monday? Good grief.
I love The Marvelous Mrs. Maisel. The dialogue is so fast (not surprising, from the creators of Gilmore Girls) that the closed captions can't keep up! Hysterical. I hope to watch all of the new season tomorrow. The costumes are gorgeous. The coats! The hats! Stunning.
"Thank you, and good night!"
et
Wednesday, December 4, 2019
Justifying Existence
I finished listening to Rev. Sarah Heath's yearlong podcast called Sonderlust. I think the overarching theme she and her guests keep coming back to is this desperate need to justify your existence in the world. We are so conditioned to think we need to be a certain status or do a certain thing or achieve or own whatever in order to earn, what, permission? to be alive. To take up space.
My hands are achy and burning. Maybe I'll add on to this later.
Women are people.
Pastors are people.
Chronically ill people are people.
Ok ow.
Peace,
emma
My hands are achy and burning. Maybe I'll add on to this later.
Women are people.
Pastors are people.
Chronically ill people are people.
Ok ow.
Peace,
emma
Tuesday, December 3, 2019
You Are The Source Of My Strength
Betcha thought this was gonna be a religious post. :)
God/Jesus/Holy Spirit... y'all are fab and I love you a bunch.
But today I realized that the source of my strength when I am having a terrible, awful, no-good-very-bad-day is none other than sweet, sweet internet access. My entire town, or so I'm told, had no internet for over 12 hours today. Some also had no TV or power at all.
No Netflix. None of my other streaming services on my TV.
No email.
No podcasts.
No YouTube.
No access to Moodle (my seminary's online server).
No music on Pandora or Spotify.
No Facebook.
No GoogleDocs.
Cut off from practically everything I rely on every day. And I hadn't seen or spoken to another human in 48 hours.
After only a couple of hours of feeling lousy and having nothing to take my mind off the pain, I feared I was descending into madness (haha). Luckily I was able to use my iPhone's hotspot feature to listen to podcasts...although I wonder how much data that ate up!
It's funny and maybe a bit frightening how dependent we are (or at least I am) on technology, particularly the internet. I'm so grateful for the folks who repaired everything, and grateful that most days I have fast, reliable internet that connects me to the world.
I am exhausted and hoping tomorrow is a better day.
love,
et
God/Jesus/Holy Spirit... y'all are fab and I love you a bunch.
But today I realized that the source of my strength when I am having a terrible, awful, no-good-very-bad-day is none other than sweet, sweet internet access. My entire town, or so I'm told, had no internet for over 12 hours today. Some also had no TV or power at all.
No Netflix. None of my other streaming services on my TV.
No email.
No podcasts.
No YouTube.
No access to Moodle (my seminary's online server).
No music on Pandora or Spotify.
No Facebook.
No GoogleDocs.
Cut off from practically everything I rely on every day. And I hadn't seen or spoken to another human in 48 hours.
After only a couple of hours of feeling lousy and having nothing to take my mind off the pain, I feared I was descending into madness (haha). Luckily I was able to use my iPhone's hotspot feature to listen to podcasts...although I wonder how much data that ate up!
It's funny and maybe a bit frightening how dependent we are (or at least I am) on technology, particularly the internet. I'm so grateful for the folks who repaired everything, and grateful that most days I have fast, reliable internet that connects me to the world.
I am exhausted and hoping tomorrow is a better day.
love,
et
Sunday, December 1, 2019
Rev. Sarah Heath & Sonderlust
Today it snowed/rained/was gross. I felt terrible. Stayed in bed until almost 3 pm. Sucks.
But I came across this amazing podcast called Sonderlust by Rev. Sarah Heath. She's a lead pastor and church planter in the United Methodist Church (in Southern California)... and a successful author, speaker, and designer... and in her late 30's, never been married, never had kids. And she goes through 52 weeks of trying to overcome sonderlust (the realization that everyone is living different, exciting lives and wishing you lived a life other than your own) and ultimately find happiness. Her best friend challenges her in a few different areas of her life, and she records the highs and lows of this quest for peace.
She has all these amazing guests on to talk about all kinds of things. My favorite episode thus far was Rev. Sarah talking with another 30-something female pastor about the unique and kind of awful situation single clergywomen face when it comes to dating. One of them shared that her would-be-fiancee backed out of proposing (even after asking her parents and friends for their blessing!) because he "just didn't want to be the pastor's husband." Ay karumba!
I think the message that I'm hearing throughout all of Rev. Sarah's journey is that ministry can be terribly isolating and lonely. She's combating a lot of self-doubt as she discusses what it's like to be a "public figure" while clinging to her non-church friends, her BFF's, who, of course, are all married. I went to a meal a couple months ago with some friends and realized when I arrived that I was the "9th wheel" - everyone else brought their spouse/fiancee/significant other. Don't get me wrong, I love them all and am grateful to be in relationship with people in all stages of life. And I'm happily single. But I feel Rev. Sarah's frustration with the clergy/dating combo resonate with me deeply. I am so relieved and comforted that there are other women who are in a similar circumstance. I texted a seminary friend of mine, we should all just get together and have amazing girls' weekends. Kindred spirits across the Methodist connection.
In other news Twixie has discovered chasing her tail. Maybe next time she does it I'll try to record it. :)
peace,
emma
But I came across this amazing podcast called Sonderlust by Rev. Sarah Heath. She's a lead pastor and church planter in the United Methodist Church (in Southern California)... and a successful author, speaker, and designer... and in her late 30's, never been married, never had kids. And she goes through 52 weeks of trying to overcome sonderlust (the realization that everyone is living different, exciting lives and wishing you lived a life other than your own) and ultimately find happiness. Her best friend challenges her in a few different areas of her life, and she records the highs and lows of this quest for peace.
She has all these amazing guests on to talk about all kinds of things. My favorite episode thus far was Rev. Sarah talking with another 30-something female pastor about the unique and kind of awful situation single clergywomen face when it comes to dating. One of them shared that her would-be-fiancee backed out of proposing (even after asking her parents and friends for their blessing!) because he "just didn't want to be the pastor's husband." Ay karumba!
I think the message that I'm hearing throughout all of Rev. Sarah's journey is that ministry can be terribly isolating and lonely. She's combating a lot of self-doubt as she discusses what it's like to be a "public figure" while clinging to her non-church friends, her BFF's, who, of course, are all married. I went to a meal a couple months ago with some friends and realized when I arrived that I was the "9th wheel" - everyone else brought their spouse/fiancee/significant other. Don't get me wrong, I love them all and am grateful to be in relationship with people in all stages of life. And I'm happily single. But I feel Rev. Sarah's frustration with the clergy/dating combo resonate with me deeply. I am so relieved and comforted that there are other women who are in a similar circumstance. I texted a seminary friend of mine, we should all just get together and have amazing girls' weekends. Kindred spirits across the Methodist connection.
In other news Twixie has discovered chasing her tail. Maybe next time she does it I'll try to record it. :)
peace,
emma
Saturday, November 30, 2019
Pain and whatever
Went to lunch and a movie with family today. About 4 hours between the time my aunt picked me up and dropped me off. I got home about five hours ago. Still achy and sore and very sensitive eyes. The food and company and movie were good, but I have so much joint pain in my shoulders, it's hard to know if venturing out is worth it.
Last week I was feeling more hopeful I could go back to work soon. Now it's not looking good, for this week anyway.
Hands are hurting. So long for now.
et
Last week I was feeling more hopeful I could go back to work soon. Now it's not looking good, for this week anyway.
Hands are hurting. So long for now.
et
Monday, November 25, 2019
"Into the Unknown"
I saw Frozen 2 twice this weekend. Loved it. Suffice it to say it was visually dazzling and musically magnificent. I have been listening to Elsa's song "Into the Unknown" on repeat for days. Its driving beat combined with Norwegian singer Aurora's ethereal voice and Idina Menzel's signature belt... it's truly transcendent. I love "Show Yourself" too. So many strong messages that so easily lend themselves to spiritual seeking and discernment. If there was any question of what Disney princess I was
I feel like I'm leaning "into the unknown" too. It's been over a month since I've been able to work. I am often foggy mentally and weak physically. I'm in considerably less pain than I had been a few weeks ago, but I haven't been able to participate in social or church things except via video chat. (Thank goodness for Zoom!)
I don't remember where I was going with this. I'm tired. Something about my leave of absence from work. Just taking one day as it comes.
Later, friends.
et
I feel like I'm leaning "into the unknown" too. It's been over a month since I've been able to work. I am often foggy mentally and weak physically. I'm in considerably less pain than I had been a few weeks ago, but I haven't been able to participate in social or church things except via video chat. (Thank goodness for Zoom!)
I don't remember where I was going with this. I'm tired. Something about my leave of absence from work. Just taking one day as it comes.
Later, friends.
et
Wednesday, November 20, 2019
Venturing Out
Today I drove a car for a bit each way to get my hair cut. Then I stopped to get toilet paper because I was running low. This is the longest excursion I've had in some time.
I got home more than 4 hours ago and I'm still exhausted. Achy. Foggy.
Mostly been chillin with my kitty and watching British design shows. They are so much more relaxed and friendly than American TV shows. I like it.
Have a little homework to do and a paper due Monday. The semester is almost over! Holy cow.
Hoping to see Frozen 2 this weekend and/or go to church and/or go to friendsgiving. If I'm not worn out by everything!
Cats are really just like living, fuzzy heating pads for your lap or legs.
meow,
et
I got home more than 4 hours ago and I'm still exhausted. Achy. Foggy.
Mostly been chillin with my kitty and watching British design shows. They are so much more relaxed and friendly than American TV shows. I like it.
Have a little homework to do and a paper due Monday. The semester is almost over! Holy cow.
Hoping to see Frozen 2 this weekend and/or go to church and/or go to friendsgiving. If I'm not worn out by everything!
Cats are really just like living, fuzzy heating pads for your lap or legs.
meow,
et
Friday, November 15, 2019
Welcome Twixie!
Meet Twixie! Aka Twix, aka Twixster, aka Cat Benatar.
She has all black whiskers except for one which is white.
Her purr sounds like a little motor.
She can be very vocal.
SHE LOVES FANCY FEAST.
She likes to climb on the couch (which I strongly discourage).
She likes to flatten herself so she can hang out under the bureau and yes, even under the couch.
She is snuggly when she wants to be.
She is a good cat so far and I'm so happy she is in her new home with me.
Enjoy the pictures!
(In the big cat room at the shelter)
YUM!!
That face!
Cat room again.
She has claimed the chair as her own!
Cat surveying her land.
meow!
et
Wednesday, November 13, 2019
It Feels Like Christmas Eve!
Today I signed the papers and adopted a cat! She's at the vet to get some shots. We will bring her here to her new home tomorrow afternoon! It feels like Christmas Eve... gotta get the house ready! I'm giddy with anticipation. I forgot to take pictures of her today. There will certainly be plenty to share tomorrow!
HRV training is going pretty well. My "aunt" S.H. accompanied me to the shelter and to lunch and noticed that I was doing much better today than the last time she saw me (and I could hardly keep my eyes open for a 40 minute visit before I had to kick her out!). Granted, I rested for a long time after our excursion, but it was good to have some decent time out. And something to look forward to! Cat cat cat cat CAT!
until to-meow-row,
et
HRV training is going pretty well. My "aunt" S.H. accompanied me to the shelter and to lunch and noticed that I was doing much better today than the last time she saw me (and I could hardly keep my eyes open for a 40 minute visit before I had to kick her out!). Granted, I rested for a long time after our excursion, but it was good to have some decent time out. And something to look forward to! Cat cat cat cat CAT!
until to-meow-row,
et
Monday, November 11, 2019
Snow & HRV/emWave & Orphans
Well it's 11/11... somebody must've wished for snow! We got a good 3 inches or so over the last 24 hours, almost all of it overnight. I'm not sure if it's because of the timing of the snow, but this time around was much less difficult for me than the last time it snowed. I still had a migraine and found the sun and snow to be painfully bright, but I was able to get out of bed and do a few small things.
Faithfully doing my HRV sessions (Heart Rate Variability) on my emWave2 by HeartMath. I run my sessions while sitting up in bed, surrounded by pillows, which is good since I fainted during my session this morning. Combination of being sleepy and being lightheaded, high heart rate and low blood pressure! I'm ok. I just have a long way to go before I can tolerate the exercises and integrate the breathing patterns and coherence training to help manage my symptoms.
Yesterday K.V. and I went to my very favorite animal shelter, Orphans of the Storm, to get some snuggles and lovin' from dogs and cats. I was/am still sad about Sasha, but it was so healing to be around animals. I feel like it's what she would want for me. It was quite an experience to be in the cat wing on a busy Sunday -- very enthusiastic volunteers and staff placed a new cat in my arms every few minutes it seemed! K.V. joked, is this a shelter or a car dealership? They act like they are working on commission! Sell sell sell! Always be closing! Here come the cats! There go the cats! Get 'em while they're hot! It was a great outing and really cheered me up.
So happy my pastor is visiting me tomorrow. Human interaction is wonderful. Also she is wonderful. Double wonderful!
Stay warm! High of 20 degrees tomorrow? Brr!
peace,
emma
Faithfully doing my HRV sessions (Heart Rate Variability) on my emWave2 by HeartMath. I run my sessions while sitting up in bed, surrounded by pillows, which is good since I fainted during my session this morning. Combination of being sleepy and being lightheaded, high heart rate and low blood pressure! I'm ok. I just have a long way to go before I can tolerate the exercises and integrate the breathing patterns and coherence training to help manage my symptoms.
Yesterday K.V. and I went to my very favorite animal shelter, Orphans of the Storm, to get some snuggles and lovin' from dogs and cats. I was/am still sad about Sasha, but it was so healing to be around animals. I feel like it's what she would want for me. It was quite an experience to be in the cat wing on a busy Sunday -- very enthusiastic volunteers and staff placed a new cat in my arms every few minutes it seemed! K.V. joked, is this a shelter or a car dealership? They act like they are working on commission! Sell sell sell! Always be closing! Here come the cats! There go the cats! Get 'em while they're hot! It was a great outing and really cheered me up.
So happy my pastor is visiting me tomorrow. Human interaction is wonderful. Also she is wonderful. Double wonderful!
Stay warm! High of 20 degrees tomorrow? Brr!
peace,
emma
Saturday, November 9, 2019
So Long For Now, Sweet Sasha
My sweet, wonderful 17-year-old cat Sasha passed peacefully today in my arms at the vet, surrounded by those who loved her most. I've been crying most of the day. Not ready to write about it yet. She was such a good cat. I miss you so much already, angel cakes.
Thankful for all the visitors, calls, texts, etc. I feel very loved. I think Sasha had only a small idea of how many people cared about her. I sure talked about her a lot. My friends and family are very loving and have been giving me space to grieve while checking in to see what I might need. Today folks brought me flowers, donuts, and brownies, and all the hugs. I hope I feel some better tomorrow. Going to see some furballs in the afternoon to fill the achy emptiness in me.
In other news, I got my emWave2! Did my first 20 minute coherence session (on low). Ended with 95 green, 4 blue, and 1 red. Not too shabby of a score but it is a LOT of work and by the end I was so light-headed I was seeing all kinds of spots. I'm going to aim to do 2 20-min sessions every day for the next 2 months. It's what got me better last time. Worth a shot. Go Team Emma!
our furry friends leave paw prints on our hearts.
love you, baby girl
emma
Thursday, November 7, 2019
Meditation
I begin the day with a meditation by Tara Brach. I end the day with a podcast by Richard Rohr. What I do in the hours in between depends entirely on my physical and cognitive capabilities. I had a lot of trouble really "waking up" today, even after I had coffee. Very foggy brain and heavy limbs for many hours.
My cat Sasha seems very lethargic today, and not purring hardly at all. She's also having trouble with her balance and footing. Going to call the vet tomorrow morning.
Fighting the monotony and boredom and loneliness. Keeping my brain engaged.
Visitors tomorrow? and Saturday. Yay.
peace,
et
My cat Sasha seems very lethargic today, and not purring hardly at all. She's also having trouble with her balance and footing. Going to call the vet tomorrow morning.
Fighting the monotony and boredom and loneliness. Keeping my brain engaged.
Visitors tomorrow? and Saturday. Yay.
peace,
et
Wednesday, November 6, 2019
Music Within
The precipitation is coming. My brain is fizzling out.
Movie recommendation: Music Within (2007)
True story about a Vietnam vet who becomes a disability advocate and helps launch programs that lead to the ADA being passed. Strong drama/comedy/biopic that doesn't fall into the schmaltzy-inspiration-vomit tone. Educational, motivational, I liked it. Spoonies unite!
That's all for now. Hoping it doesn't snow too much because my cognitive function is affected by it.
et
Movie recommendation: Music Within (2007)
True story about a Vietnam vet who becomes a disability advocate and helps launch programs that lead to the ADA being passed. Strong drama/comedy/biopic that doesn't fall into the schmaltzy-inspiration-vomit tone. Educational, motivational, I liked it. Spoonies unite!
That's all for now. Hoping it doesn't snow too much because my cognitive function is affected by it.
et
Tuesday, November 5, 2019
I Left The House! / Exhaustion
My arms are very sore today, I think from folding laundry and washing/drying my hair yesterday. Talk about borrowing spoons against the next day! Also my back hurts and vision is weird sometimes.
I rested up all day to go to my dentist appointment in the afternoon. It had been 8 days since I had last left my house. The world is far too bright for my tiny eyeballs! Good thing it was a very short drive, and a short appointment too. I was worn out by the time I got home. It was exactly 38 minutes of activity. And I was, and still am, POOPED.
The thing about a cane is that everybody comments on it. It is the best thing, because it's a VISIBLE symbol that I'm struggling. It's a symbol that something is not right. (As opposed to POTS, which is INVISIBLE.) People who are caring will see this symbol (my cane) and react with compassion, asking if something happened recently, or if I'm all right. I may "introduce" them to Cleopatra, or I may simply tell them I have a chronic illness and require a cane to be more easily mobile when I am feeling weak. Sometimes they don't know what to say then. "Feel better"? "Oh, ok"? "Love the color!"? Eh, those are all fine. I can tell they have more questions, but it isn't their place. Good for them to know boundaries. This is the dentist's office; I'm here for you to tend to my teeth, not to my POTS!
People who have jerk-face tendencies, however will see my cane as something else. A scheme. A pitiful cry for attention. Even a bad omen. Some will express these thoughts with words. Many will just make a face or roll their eyes. I tend to avoid inviting/initiating eye contact with strangers when I use my cane. I'm fighting enough battles without having to defend myself against some butt-head who thinks I'm faking and shouldn't be taking the handicap accessible parking space. (Relax, Bozo. I don't have the energy to jump through those hoops to get a placard right now anyway. I parked in the regular spaces. Leave people alone.)
I am grateful for kind people. Be kind.
In other news, I discovered there are Broadway podcasts! Amazing! Can't wait to listen.
peace,
emma
I rested up all day to go to my dentist appointment in the afternoon. It had been 8 days since I had last left my house. The world is far too bright for my tiny eyeballs! Good thing it was a very short drive, and a short appointment too. I was worn out by the time I got home. It was exactly 38 minutes of activity. And I was, and still am, POOPED.
The thing about a cane is that everybody comments on it. It is the best thing, because it's a VISIBLE symbol that I'm struggling. It's a symbol that something is not right. (As opposed to POTS, which is INVISIBLE.) People who are caring will see this symbol (my cane) and react with compassion, asking if something happened recently, or if I'm all right. I may "introduce" them to Cleopatra, or I may simply tell them I have a chronic illness and require a cane to be more easily mobile when I am feeling weak. Sometimes they don't know what to say then. "Feel better"? "Oh, ok"? "Love the color!"? Eh, those are all fine. I can tell they have more questions, but it isn't their place. Good for them to know boundaries. This is the dentist's office; I'm here for you to tend to my teeth, not to my POTS!
People who have jerk-face tendencies, however will see my cane as something else. A scheme. A pitiful cry for attention. Even a bad omen. Some will express these thoughts with words. Many will just make a face or roll their eyes. I tend to avoid inviting/initiating eye contact with strangers when I use my cane. I'm fighting enough battles without having to defend myself against some butt-head who thinks I'm faking and shouldn't be taking the handicap accessible parking space. (Relax, Bozo. I don't have the energy to jump through those hoops to get a placard right now anyway. I parked in the regular spaces. Leave people alone.)
I am grateful for kind people. Be kind.
In other news, I discovered there are Broadway podcasts! Amazing! Can't wait to listen.
peace,
emma
Monday, November 4, 2019
Halfway Decent Day?
I started to get worried last night. My stomach was talking. Old symptom showing up again.
Then this morning I woke up at 3am, wide awake. I was like no, no, no, we are not going to do this again. My sleep thus far has been uninterrupted, if not totally restorative. I used to have major issues getting enough sleep. I was not happy to be haunted by these old symptoms and patterns I had for so many years.
So I made an executive decision. Time to get serious about my treatment and hopes for recovery. Biofeedback got me better the last time, we can do it again. I ordered the emWave2 from HeartMath, the same software that I got from the POTS Treatment Center in Dallas. It should be a big improvement over the old one that I got 7 years ago, and it should work with my MacBook, iPad, and on my iPhone too. It takes a certain leap of faith to get past the skepticism of the program. HeartMath's website looks really cheesy and too good to be true. But it worked for me before! Should arrive by Friday, and we'll dive right back into the intense coherence training.
Otherwise it's been a fairly decent day! Did 2 loads of laundry! Took a shower AND conditioned AND blow-dried my hair! Sitting up about as much as I'm lying down! Such a difference compared to Wed/Thurs/Fri last week, or even this weekend. Hoping the mental clarity lasts too.
peace,
et
Then this morning I woke up at 3am, wide awake. I was like no, no, no, we are not going to do this again. My sleep thus far has been uninterrupted, if not totally restorative. I used to have major issues getting enough sleep. I was not happy to be haunted by these old symptoms and patterns I had for so many years.
So I made an executive decision. Time to get serious about my treatment and hopes for recovery. Biofeedback got me better the last time, we can do it again. I ordered the emWave2 from HeartMath, the same software that I got from the POTS Treatment Center in Dallas. It should be a big improvement over the old one that I got 7 years ago, and it should work with my MacBook, iPad, and on my iPhone too. It takes a certain leap of faith to get past the skepticism of the program. HeartMath's website looks really cheesy and too good to be true. But it worked for me before! Should arrive by Friday, and we'll dive right back into the intense coherence training.
Otherwise it's been a fairly decent day! Did 2 loads of laundry! Took a shower AND conditioned AND blow-dried my hair! Sitting up about as much as I'm lying down! Such a difference compared to Wed/Thurs/Fri last week, or even this weekend. Hoping the mental clarity lasts too.
peace,
et
Sunday, November 3, 2019
Music to Cheer You
Loved getting a visit from my friend/spiritual director Wendy today. Lots of personal growth and meaning-making from this time of pain and illness. I am so grateful for her presence in my life.
I watched a very silly movie called The Fighting Temptations (2003)- starring Cuba Gooding Jr, Beyonce, and Steve Harvey. It's basically Sister Act. But I like Sister Act. Enjoy this fun version of "Loves Me Like A Rock" from the barbershop guys.
harmonica solo!
emma
I watched a very silly movie called The Fighting Temptations (2003)- starring Cuba Gooding Jr, Beyonce, and Steve Harvey. It's basically Sister Act. But I like Sister Act. Enjoy this fun version of "Loves Me Like A Rock" from the barbershop guys.
harmonica solo!
emma
Saturday, November 2, 2019
Could You Spare A Square? and PODCASTS
True friends are the ones who make sure, when you've been bed-bound for days, that there's enough toilet paper in the house. Thank you, Karen V.
I'm making a list of all the podcasts I like:
The Liturgists
The Alien & The Robot
Urban Village Church, Chicago
StoryCorps & StoryCorps Chicago
Everything Happens with Kate Bowler
Terrible, Thanks For Asking
Yes Gawd Pawdcast
Permission to BE
On Being
Invisibilia
TED Radio Hour
This American Life
Loving THIS with Michael Gungor
The Moth
Other People's Problems
Another Name for Every Thing with Richard Rohr
Ask Science Mike
Kaleidoscope
Failing Boldly
The Sleeping At Last Podcast
Sandi Klein's Conversations with Creative Women
Soul Search
God Forbid
Some more that I want to check out but haven't listened to yet:
The Trouble with Shannon Cason
Bullseye with Jesse Thorn
The New Yorker Radio Hour
AudPod
The Dave Berry Breakfast Show
It seems I may be in my present condition for some time. Feeling grateful for entertainment / education / stimulation to keep my mind somewhat sharp when my body can't do much.
Let me know if you have other podcasts you recommend!
elaine benes dance,
et
I'm making a list of all the podcasts I like:
The Liturgists
The Alien & The Robot
Urban Village Church, Chicago
StoryCorps & StoryCorps Chicago
Everything Happens with Kate Bowler
Terrible, Thanks For Asking
Yes Gawd Pawdcast
Permission to BE
On Being
Invisibilia
TED Radio Hour
This American Life
Loving THIS with Michael Gungor
The Moth
Other People's Problems
Another Name for Every Thing with Richard Rohr
Ask Science Mike
Kaleidoscope
Failing Boldly
The Sleeping At Last Podcast
Sandi Klein's Conversations with Creative Women
Soul Search
God Forbid
Some more that I want to check out but haven't listened to yet:
The Trouble with Shannon Cason
Bullseye with Jesse Thorn
The New Yorker Radio Hour
AudPod
The Dave Berry Breakfast Show
It seems I may be in my present condition for some time. Feeling grateful for entertainment / education / stimulation to keep my mind somewhat sharp when my body can't do much.
Let me know if you have other podcasts you recommend!
elaine benes dance,
et
Friday, November 1, 2019
Disability Theologians Are Rock Stars
In terms of physical symptoms and limitations, yesterday was a very bad day. Today was a bad day. I stayed in bed all day both days, but today I was in the fetal position a lot less. By evening I was even able to do a little bit of reading... by a disability theologian named Shane Clifton, whom I was introduced to by an Australian religious/spiritual podcast called Soul Search. I don't have much energy left today to go into detail, but he is great, and it's so encouraging to hear he's a part of a progressive (Pentecostal?) church that seeks to give voice to marginalized groups. He suffered a spinal cord injury in 2010 and has been a quadriplegic since. His writing about how disabled people are portrayed in the media (think movies like Million Dollar Baby and Me Before You) is so spot-on and strikes a chord with me.
I think I block out much, maybe even most, of the stupid things people say to me or have said to me over the years, in reference to my POTS. But I vaguely remember someone I went to high school with, upon hearing that I'd been bedridden for four years, gasped and said, "Oh God, I'd literally rather die. That is so f-ing depressing."
I could say a whole lot about that but my brain is tired. Here are the resources if you want to learn more about disability theologian Shane Clifton:
Shane Clifton's website
His book - Crippled Grace
The podcast episode where I first heard of him - Soul Search - his portion begins about 1/2 or 2/3 way through.
peace, friends
et
I think I block out much, maybe even most, of the stupid things people say to me or have said to me over the years, in reference to my POTS. But I vaguely remember someone I went to high school with, upon hearing that I'd been bedridden for four years, gasped and said, "Oh God, I'd literally rather die. That is so f-ing depressing."
I could say a whole lot about that but my brain is tired. Here are the resources if you want to learn more about disability theologian Shane Clifton:
Shane Clifton's website
His book - Crippled Grace
The podcast episode where I first heard of him - Soul Search - his portion begins about 1/2 or 2/3 way through.
peace, friends
et
Thursday, October 31, 2019
Happy Hallowinter!
Today is not a couch day. Oh no. Today is a fetal-position-in-bed-all-day day.
Snow. Wind. Slush. Cold.
Turtlenecks. Turtlenecks. Hat. Sweater socks.
Listening to podcasts on a variety of mystics, misfits, and martyrs.
Headache. Go away computer screen.
Trick or treat...
or should I say slick or sleet!
et
Snow. Wind. Slush. Cold.
Turtlenecks. Turtlenecks. Hat. Sweater socks.
Listening to podcasts on a variety of mystics, misfits, and martyrs.
Headache. Go away computer screen.
Trick or treat...
or should I say slick or sleet!
et
Wednesday, October 30, 2019
"A New Day Has Come"
I'm having a Celine Dion moment. This song came out when I was in sixth grade. I loved singing along when I heard it on the radio in the car or in my room with tie-dye wallpaper on my slick silver boom-box (that I still have, haha).
The lyrics hold special meaning for me today:
"A New Day Has Come"
Celine Dion
The lyrics hold special meaning for me today:
"Hush, now
I see a light in the sky
Oh! IT'S ALMOST BLINDING ME!"
My pupils are the size of a pinhead. I sit in near-darkness most of the time if I'm not wearing my eye mask. Everything is too too too bright. Classic POTSie symptom. Silly parasympathetic nervous system!
Love friends and aunts and food and podcasts. The snow will start around 11pm tonight. Tomorrow will stink and be cold but we'll get through it. Be safe out there!
"I cannot talk. Celine Dion is here." -Michel
et
Tuesday, October 29, 2019
Brace for Impact
They're saying snow is in the forecast for tomorrow and Thursday (Halloween). Accumulation of up to 3 inches. Trick-or-treating hours in my town have officially been moved to Saturday afternoon in anticipation of the inclement weather.
My body is bracing for impact. Sometimes it feels like the systems of my body are shutting down, one after another. This morning everything was extremely blurry, even with my glasses on. Super dizzying and disorienting.
Listening to lots of podcasts. Eyes closed. Will maybe try to do some homework/ discussion board posts if my brain/eyes can handle it. Reminding myself to eat and drink and breathe. Looking forward to a friend visiting tonight and my aunt coming tomorrow around lunchtime.
Wish I had the mental energy to write something profound. Perhaps another day.
et
Monday, October 28, 2019
Sluggish Monday
I wake up feeling like I have already had the most exhausting day. I suspect my sleep is getting less and less restorative as this flare up goes on. I shuffle to the couch. I shuffle to the kitchen. I shuffle back to bed. My socks on the carpet get very staticky haha.
I feel like my arms are disconnecting from my shoulders. I feel the blood sluggish in my arms and hands. Sometimes I drink coffee at 5pm because I feel like I never really woke up.
Got the loveliest care package from my aunt, uncle, and cousins in Ewing, NJ! Y'all are so sweet and wonderful. Thank you.
People ask what I need. Today I discovered I have a very specific need. I have been spending quite a bit of time on the couch... and a seam on my couch has popped! Do I know anyone skilled in a little light upholstery mending?
I love podcasts. Kate Bowler is amazing and all of her guests are so enlightening and brave and inspiring.
Wishing you sleep that refreshes your body, mind, and spirit.
et
I feel like my arms are disconnecting from my shoulders. I feel the blood sluggish in my arms and hands. Sometimes I drink coffee at 5pm because I feel like I never really woke up.
Got the loveliest care package from my aunt, uncle, and cousins in Ewing, NJ! Y'all are so sweet and wonderful. Thank you.
People ask what I need. Today I discovered I have a very specific need. I have been spending quite a bit of time on the couch... and a seam on my couch has popped! Do I know anyone skilled in a little light upholstery mending?
I love podcasts. Kate Bowler is amazing and all of her guests are so enlightening and brave and inspiring.
Wishing you sleep that refreshes your body, mind, and spirit.
et
Sunday, October 27, 2019
Sleeping At Last - Enneagram-Inspired Music
The hours kind of just...pass by. Each day rolls into the next. It's like living on my own planet. Glad I got to FaceTime with my 2 besties from undergrad today. We each live in a different time zone now. Trying to make some contact with the world on a regular basis.
I love The Liturgists podcast and their work with the Enneagram. Sleeping At Last teamed up with them to write songs of each Enneagram number. This song resonates with me deeply, as I am a One. I encourage you to explore the podcast (or any number of books about the Enneagram) and check out the songs that pertain to each type. Sleeping At Last creates such poetic works of art. Reminds me we are all capable of growth.
"I want to sing a song worth singing,"
emma
I love The Liturgists podcast and their work with the Enneagram. Sleeping At Last teamed up with them to write songs of each Enneagram number. This song resonates with me deeply, as I am a One. I encourage you to explore the podcast (or any number of books about the Enneagram) and check out the songs that pertain to each type. Sleeping At Last creates such poetic works of art. Reminds me we are all capable of growth.
emma
Saturday, October 26, 2019
Forever Endeavor
Crushing pain today. Cramping legs. Vision things. Getting a lot of use out of my eye pillow/mask as I lie here and listen to music and reflect. Feels like there's menthol lotion all over my arms. It hurts but is also, like, refreshing? calming? Weird.
It's raining. I wish I had a catapult and 12 dozen eggs. Try to hit the cars as they drive by.
Lovely visit from SH this morning. Wish I had more energy. Mmm zucchini bread.
Gonna try my darnedest to get some schoolwork done later. Need to rest my eyes.
peace,
et
It's raining. I wish I had a catapult and 12 dozen eggs. Try to hit the cars as they drive by.
Lovely visit from SH this morning. Wish I had more energy. Mmm zucchini bread.
Gonna try my darnedest to get some schoolwork done later. Need to rest my eyes.
peace,
et
Friday, October 25, 2019
All the Hugs
Today was better than average in terms of pain, but pretty much spent glued to the couch. I've been bingeing the BBC series "Land Girls" about British women working on the countryside in World War II. I love the hats and coats. I would love to inject my wardrobe with inspiration from 1940s women's outerwear. So classy.
Today I found out that I HAVE THE MOST AMAZING FRIENDS. The C family came over to visit me and to hang out and give me lots of cuddles and food. It was so fun to hang out and color with D and E, who wore their Halloween costumes and looked quite snazzy as a cat and a tiger. My fridge and freezer are packed with chili cooked with superfoods and love by C and S. I am plumb tuckered out after our time together, but so deeply moved by the C family's generosity and kindness, and just their ability and willingness to be present in the midst of my feeling crummy. We laughed, we ate, colored, we pounced on furniture. Feeling very loved.
love & spoons,
emma
Today I found out that I HAVE THE MOST AMAZING FRIENDS. The C family came over to visit me and to hang out and give me lots of cuddles and food. It was so fun to hang out and color with D and E, who wore their Halloween costumes and looked quite snazzy as a cat and a tiger. My fridge and freezer are packed with chili cooked with superfoods and love by C and S. I am plumb tuckered out after our time together, but so deeply moved by the C family's generosity and kindness, and just their ability and willingness to be present in the midst of my feeling crummy. We laughed, we ate, colored, we pounced on furniture. Feeling very loved.
love & spoons,
emma
Thursday, October 24, 2019
Exploring Options
I've scarcely left my apartment in a week, but today was the first day I've cried.
Screens and reading are difficult. Lots of headaches, dizziness, feeling like my eyes are crossing or seeing double. Today I sent an email to my bosses at work that the time has come for us to look into what it might look like for me to take a leave of absence. Just another loosening of my grip on control, on normalcy. Diving headfirst into the familiar unknown. I've been here before. Just not for a long while.
Leaning into discomfort. Stretching my muscles of introspection.
I am a human being.
Not a human doing.
Not a human planning.
I am a human.
I am not my illness.
I am not my illness.
I am not broken.
I am whole.
and wholly God's,
unafraid of tomorrow
for I am held
by the Source of
All
that is Good.
blessings, friends.
et
Screens and reading are difficult. Lots of headaches, dizziness, feeling like my eyes are crossing or seeing double. Today I sent an email to my bosses at work that the time has come for us to look into what it might look like for me to take a leave of absence. Just another loosening of my grip on control, on normalcy. Diving headfirst into the familiar unknown. I've been here before. Just not for a long while.
Leaning into discomfort. Stretching my muscles of introspection.
I am a human being.
Not a human doing.
Not a human planning.
I am a human.
I am not my illness.
I am not my illness.
I am not broken.
I am whole.
and wholly God's,
unafraid of tomorrow
for I am held
by the Source of
All
that is Good.
blessings, friends.
et
Wednesday, October 23, 2019
End Ableism
I'll make this short since my eyes are weary from lights and computers, and I still have another assignment to submit tonight.
Ableism is everywhere. It must be dismantled.
Internalized capitalism is everywhere. We must see it for what it is and change our attitudes towards people who appear "defective" or "unproductive."
I am tired.
That is all.
et
Ableism is everywhere. It must be dismantled.
Internalized capitalism is everywhere. We must see it for what it is and change our attitudes towards people who appear "defective" or "unproductive."
I am tired.
That is all.
et
Tuesday, October 22, 2019
The Lamps Have Been Canonized!
Woke up with double vision, brain fog, and just all-around feeling out of it. No work for me. :( Went back to sleep for a couple hours, but throughout the day I had the same light sensitivity and fatigue as yesterday. I'm tempted to refer to all of the light fixtures in my house as "Saint" -- they each have a halo! Other visual disturbances confirmed my suspicion that I would not be driving today. Thank God for Peapod!
Watched (or listened to) several more episodes of Jeopardy! When in doubt, the answer is either What is Pygmalion? or What is the Bactrian (two-humped) camel?
Got to video chat with some friends at school who have brought Invisible Disability Awareness Week to our seminary! Learn about Spoon Theory below!
Salt. Water. Breathing. Ibuprofen. Ice packs. Tiger Balm. Spark. Doing what I can with what I've got. Gonna kick POTS in the patootie.
et
Watched (or listened to) several more episodes of Jeopardy! When in doubt, the answer is either What is Pygmalion? or What is the Bactrian (two-humped) camel?
Got to video chat with some friends at school who have brought Invisible Disability Awareness Week to our seminary! Learn about Spoon Theory below!
Thankful for all of the Spoon Collective's hard work over the last several months to make this happen, and to make visible the invisible. They have had a lot of students, staff, and faculty sign up already to be on the email list, wanting to become better allies to those of us who live with chronic illnesses and disabilities.
Salt. Water. Breathing. Ibuprofen. Ice packs. Tiger Balm. Spark. Doing what I can with what I've got. Gonna kick POTS in the patootie.
et
Monday, October 21, 2019
"Somehow I Manage" by Michael Scott
I think I should be promoted to Manager. It's what I do, after all. Manage symptoms. Manage expectations.
Managed to get out of bed this morning and work half the day (a little over 3 hours) before I felt a seizure coming on and headed home. Collapsed on the couch, eyes fluttering all over the place.
Everything is too bright. I wear sunglasses inside. I have my lights and laptop on the dimmest setting. I have a lavender-scented eye pillow mask that I freeze and wear over my eyes throughout the day when I can. I am very cold but also sweating a lot. My body feels very weak but my soul feels strong.
Got my cane today. Here's what she looks like:
Managed to get out of bed this morning and work half the day (a little over 3 hours) before I felt a seizure coming on and headed home. Collapsed on the couch, eyes fluttering all over the place.
Everything is too bright. I wear sunglasses inside. I have my lights and laptop on the dimmest setting. I have a lavender-scented eye pillow mask that I freeze and wear over my eyes throughout the day when I can. I am very cold but also sweating a lot. My body feels very weak but my soul feels strong.
Got my cane today. Here's what she looks like:
Her name is Cleopatra, or "Patty" for short haha. She is beautiful and flexible. She helps make me more able and mobile. We are strong women, and we are not in "De-Nile." We face obstacles head on and are not ashamed to use assistance.
Speaking of assistance, got an extension on a paper. Ordered groceries from Peapod that'll arrive tomorrow. Doing what I can. Not judging myself for things I can't. Gotta take care of me and conserve my spoons!
And if your spirit needs to soar today, here's a personal favorite figure skating program: Sasha Cohen to Celine Dion's "To Love You More" (2000). She is so expressive. Love it.
night!
et
Sunday, October 20, 2019
My 29th Birthday: "Yes, and"
Sigh. It has been a day. I woke up with terrible coat-hanger pain - sharp pain across my shoulder blades and up through my neck. So fatigued. Hobbled to the couch and watched Jeopardy! with my eyes closed some of the time when things were too bright. Got a migraine. Listened to music. Listened to my church's worship service which was live-streamed on Facebook. (Thank you, church friends!) I was pretty sad I couldn't be with my community in general today, but especially because it's my birthday. Thankful they are praying for/with me!
My aunt and her significant other and my grandparents visited me and brought me brunch, which was a treat. They stayed a little over an hour, and while I was happy to see them, sitting up for the visit wiped me out. My muscles and joints are so fatigued that I can't be upright in any way for very long without support. I was telling my aunt last week, if I didn't have arm rests on my desk chair at work, I wouldn't be able to make it through the day. I am always having to prop myself up. After the visit today I needed to be strictly horizontal for at least a couple of hours. Hello, couch!
The most interesting part of my day, though, was a movie I watched in the afternoon. It's called Don't Think Twice, about a longstanding NYC improv troupe and some big changes they face. Having grown up in theatre classes and summer camps, the core beliefs and practices of this comical community were familiar to me, yet held new meaning in my present situation:
"Yes, and"
"Yes, and" means that whatever your scene partner creates and says to be real and true in your improv context, you "say yes" - you affirm it - and you add to it. For instance:
Person 1: Oh no, there's a snail on your face!
Person 2: Agh! Yes! And it's eating my eyes!
Person 3: Yes! They're out to blind us! And there's a whole infestation of them coming from those Spongebob merchandise vans!
Person 1: Yes! And I know how we can get rid of them. YO, GARY!
etc.
There are honestly almost no rules in improv except for "Yes, and." Partner and group dynamic are built upon this understanding, this promise, this trust that I will affirm what you do and I will not abandon what you are creating. Rather I will add to it, and take it to a new level, a higher expression, something only we can imagine, together.
These days, I feel like I am in an improv game with God. Or maybe it's just a handful of improv actor me's and God is the improv teacher or something. My natural reaction as a human when crappy things happen is to deny, withdraw, conceal. But God invites me to try "Yes, and":
I am in terrible pain.
Yes, and almost the entire day.
Yes, and I can't stand for very long.
Yes, and my world is changing.
Yes, and I'm scared.
Yes, and I am loved.
Yes, by God and multiple communities.
Yes, and I am not alone.
Yes, and I am blessed to have access to technology to be in contact with folks from all over, with and without chronic illness.
Yes, and I am using my gifts and my circumstances to create something new and bold and truthful to express the pain and fear and joys of my life.
Yes, and I find art. And music. And dance. And love. And grace. And God.
Yes, and
Yes, and
Yes, and
In the film, the actors have a ritual they perform before every show. Backstage, as the emcee begins to introduce the show, they tap each others' backs and look each other in the eye and say, "Got your back." "Got your back." "Got your back." They support one another. They believe in each other's vision and creativity and skill. And they will not leave one another hanging, or make one another look bad. Improv is commitment to the group, to the sketch. And I feel like God is constantly whispering to me, "Got your back." Things might get weird and bad but I am committed to you and to making meaning out of all this. Follow me.
The main sketch set-up the troupe begins a number of times throughout the movie is based on a question the emcee asks the audience: "Has anyone had a particularly hard day?" When they act out this difficult day, which may have been discouraging or even traumatic for the audience member who volunteered it, the actors take the day's events to a hyperbolic level, that by the end even the person who shared is laughing. Sometimes it takes that vulnerability of saying, hey, I had a really sucky day today, to find some slivers of hope or humor in it. That's what friends do. That's what God does. Reflection is about engaging with the past in a way that empowers us to imagine a braver tomorrow.
It's my birthday. It's been a hard day. But God and friends and family have got my back. And I've got yours too.
May my 29th year be one in which I proudly say, again and again, "Yes, and."
love
emma
My aunt and her significant other and my grandparents visited me and brought me brunch, which was a treat. They stayed a little over an hour, and while I was happy to see them, sitting up for the visit wiped me out. My muscles and joints are so fatigued that I can't be upright in any way for very long without support. I was telling my aunt last week, if I didn't have arm rests on my desk chair at work, I wouldn't be able to make it through the day. I am always having to prop myself up. After the visit today I needed to be strictly horizontal for at least a couple of hours. Hello, couch!
The most interesting part of my day, though, was a movie I watched in the afternoon. It's called Don't Think Twice, about a longstanding NYC improv troupe and some big changes they face. Having grown up in theatre classes and summer camps, the core beliefs and practices of this comical community were familiar to me, yet held new meaning in my present situation:
"Yes, and"
"Yes, and" means that whatever your scene partner creates and says to be real and true in your improv context, you "say yes" - you affirm it - and you add to it. For instance:
Person 1: Oh no, there's a snail on your face!
Person 2: Agh! Yes! And it's eating my eyes!
Person 3: Yes! They're out to blind us! And there's a whole infestation of them coming from those Spongebob merchandise vans!
Person 1: Yes! And I know how we can get rid of them. YO, GARY!
etc.
There are honestly almost no rules in improv except for "Yes, and." Partner and group dynamic are built upon this understanding, this promise, this trust that I will affirm what you do and I will not abandon what you are creating. Rather I will add to it, and take it to a new level, a higher expression, something only we can imagine, together.
These days, I feel like I am in an improv game with God. Or maybe it's just a handful of improv actor me's and God is the improv teacher or something. My natural reaction as a human when crappy things happen is to deny, withdraw, conceal. But God invites me to try "Yes, and":
I am in terrible pain.
Yes, and almost the entire day.
Yes, and I can't stand for very long.
Yes, and my world is changing.
Yes, and I'm scared.
Yes, and I am loved.
Yes, by God and multiple communities.
Yes, and I am not alone.
Yes, and I am blessed to have access to technology to be in contact with folks from all over, with and without chronic illness.
Yes, and I am using my gifts and my circumstances to create something new and bold and truthful to express the pain and fear and joys of my life.
Yes, and I find art. And music. And dance. And love. And grace. And God.
Yes, and
Yes, and
Yes, and
In the film, the actors have a ritual they perform before every show. Backstage, as the emcee begins to introduce the show, they tap each others' backs and look each other in the eye and say, "Got your back." "Got your back." "Got your back." They support one another. They believe in each other's vision and creativity and skill. And they will not leave one another hanging, or make one another look bad. Improv is commitment to the group, to the sketch. And I feel like God is constantly whispering to me, "Got your back." Things might get weird and bad but I am committed to you and to making meaning out of all this. Follow me.
The main sketch set-up the troupe begins a number of times throughout the movie is based on a question the emcee asks the audience: "Has anyone had a particularly hard day?" When they act out this difficult day, which may have been discouraging or even traumatic for the audience member who volunteered it, the actors take the day's events to a hyperbolic level, that by the end even the person who shared is laughing. Sometimes it takes that vulnerability of saying, hey, I had a really sucky day today, to find some slivers of hope or humor in it. That's what friends do. That's what God does. Reflection is about engaging with the past in a way that empowers us to imagine a braver tomorrow.
It's my birthday. It's been a hard day. But God and friends and family have got my back. And I've got yours too.
May my 29th year be one in which I proudly say, again and again, "Yes, and."
love
emma
Saturday, October 19, 2019
Finding Myself in Limitation
My eyes have been fluttery most of the day. Pre-seizure-y episodes mean I ought not to drive or do anything strenuous. Body feels heavy and mostly useless. Ears and eyes sensitive at different times, meaning that when I woke up this morning, I listened to a 90 minute podcast with my eyes closed, whereas later in the day I watched muted TV with the subtitles on. My brain is just foggy and doesn't do well with too much stimulation.
Jeopardy! episodes are fun. I love PBS and PBS Digital Studios. I love The Liturgists podcast and think Hillary McBride is so wise and inspiring and well-spoken.
I set tiny goals for myself throughout the day. I am proud that, over the course of a couple hours, I broke down a bunch of boxes and took them out to the recycling. Now back on the couch.
My world feels like it is getting smaller rather quickly, and yet untold dimensions of my mind beckon. There's an amazing sort of freedom that comes with physical disability, time, and internet access. I don't like being sick, believe me, but I feel like God is inviting me to flip the script. Am I sad that I feel crummy? You bet. Will I let POTS have the last word? No way! This is time and space and opportunity for exploration of podcasts and movies and subjects that will add to the depth of my humanity, and in turn (I hope), the depth of the ministry God calls me to.
Missing the family gathering tonight because I feel super lousy and can't drive, but will see some folks tomorrow.
a horse named nugget,
et
Jeopardy! episodes are fun. I love PBS and PBS Digital Studios. I love The Liturgists podcast and think Hillary McBride is so wise and inspiring and well-spoken.
I set tiny goals for myself throughout the day. I am proud that, over the course of a couple hours, I broke down a bunch of boxes and took them out to the recycling. Now back on the couch.
My world feels like it is getting smaller rather quickly, and yet untold dimensions of my mind beckon. There's an amazing sort of freedom that comes with physical disability, time, and internet access. I don't like being sick, believe me, but I feel like God is inviting me to flip the script. Am I sad that I feel crummy? You bet. Will I let POTS have the last word? No way! This is time and space and opportunity for exploration of podcasts and movies and subjects that will add to the depth of my humanity, and in turn (I hope), the depth of the ministry God calls me to.
Missing the family gathering tonight because I feel super lousy and can't drive, but will see some folks tomorrow.
a horse named nugget,
et
Friday, October 18, 2019
Chicken Seizure Salad
Went to work this morning. Felt shaky. Had a seizure. [Dag frickin life.] Came home. Drank water and vitamins and inhaled all the saltiest food and lay on the couch with an ice pack and a hat and both remotes although sometimes it hurts to hold them. Did my breathing. Want to break things.
I find that I bounce between total denial of everything ("This is fine. I'm fine. Look, I get to watch TV and write and reorganize my candles and daydream, isn't this nice, I'm fine. It's fine.") and like emo screamo punk rock "THIS SUCKS!" Emma's Brain. Eleventh Floor: Relapse Department. East Wing: Grief, Grieving, and All the Feelings.
Tonight I am lying here missing two separate dear friends' birthday celebrations. They each also suffer from a chronic illness. They, more than anyone, understand. We have a shared language of spoonies, of symptoms, of horrible doctor visits. But my illness and the distance between us geographically are keeping me from being with my community. This is what disability looks like. Isolation.
Thank God for technology. I was going to write a paragraph on that but now I am suddenly exhausted and need to close my eyes.
Later, friends.
et
I find that I bounce between total denial of everything ("This is fine. I'm fine. Look, I get to watch TV and write and reorganize my candles and daydream, isn't this nice, I'm fine. It's fine.") and like emo screamo punk rock "THIS SUCKS!" Emma's Brain. Eleventh Floor: Relapse Department. East Wing: Grief, Grieving, and All the Feelings.
Tonight I am lying here missing two separate dear friends' birthday celebrations. They each also suffer from a chronic illness. They, more than anyone, understand. We have a shared language of spoonies, of symptoms, of horrible doctor visits. But my illness and the distance between us geographically are keeping me from being with my community. This is what disability looks like. Isolation.
Thank God for technology. I was going to write a paragraph on that but now I am suddenly exhausted and need to close my eyes.
Later, friends.
et
Thursday, October 17, 2019
Shopping Spree
There's a movie on Netflix that I love, I've seen it several times now. It's called Wine Country (starring Amy Poehler, Maya Rudolph, Rachel Dratch, Tina Fey, and more), and it's about a group of gal pals who go to (you guessed it) Wine Country for a reunion. They've been friends since they all worked together at Antonio's Pizzeria in Chicago, in the '90s, an era dubbed "the pizza trenches." Now middle aged, their lives have changed significantly, and they've picked up the saying "Things we say now," comically highlighting how they need CPAP machines, regular mammograms, and help fixing a thrown-out back.
Things we say now.
Things I say now.
Over the last few days I have purchased several items for myself, in part because it is my 29th birthday in 3 days, and maybe I owe myself a treat! But more realistically, I'm purchasing these items because I need these things to support me. Physically. Medically. Chemically. Bodily. I'm sure I will be happy when my supplements and cane and colorful compression socks come in next week, as well as a much-needed new pair of glasses. But for right now I'm just sighing and nodding. On the edge of 29. All my "fun money" this month going toward medical-related purchases. Eh, such is life. Things we say now.
et
Things we say now.
Things I say now.
Over the last few days I have purchased several items for myself, in part because it is my 29th birthday in 3 days, and maybe I owe myself a treat! But more realistically, I'm purchasing these items because I need these things to support me. Physically. Medically. Chemically. Bodily. I'm sure I will be happy when my supplements and cane and colorful compression socks come in next week, as well as a much-needed new pair of glasses. But for right now I'm just sighing and nodding. On the edge of 29. All my "fun money" this month going toward medical-related purchases. Eh, such is life. Things we say now.
et
Wednesday, October 16, 2019
It was the Best (Buy) of times, it was the worst of times
Today I forced myself out of bed at 11am. I had been putting off a couple of important errands. I didn't feel great but I wanted to get up and get out.
I went to Best Buy to get an adapter for my new(ish) laptop. You don't realize how big of a store it is until you're unwell. Plenty of accessible parking open but I do not have a placard. I hobbled in from the parking lot and was directed toward the adapters, but there's like 15 different ones and I wanted to be sure I had the right one. So I waited (standing, unsupported) for about a minute and a half, for an employee to finish assisting another customer. In that amount of time, those 90 seconds, I can feel the oxygen not getting to my brain. I can feel the blood pooling in my feet, my stance unsteady. There's a woman in line behind me. How embarrassing would it be if I sat down right now? Or lay down? Coming here was a mistake-- luckily he finishes with the customer and I'm able to lean on the register while he confirms my selection and rings me up. I am feeling foggy and confused.
As I hobble out of the store and back to my car, heart racing, exhausted from my less-than-ten-minute excursion, I wonder if it's time to invest in a cane or walker.
And/or just stay home and shop online forever.
Everything hurts. Music makes things better. Maybe I'll post some tunes later on.
peace,
et
I went to Best Buy to get an adapter for my new(ish) laptop. You don't realize how big of a store it is until you're unwell. Plenty of accessible parking open but I do not have a placard. I hobbled in from the parking lot and was directed toward the adapters, but there's like 15 different ones and I wanted to be sure I had the right one. So I waited (standing, unsupported) for about a minute and a half, for an employee to finish assisting another customer. In that amount of time, those 90 seconds, I can feel the oxygen not getting to my brain. I can feel the blood pooling in my feet, my stance unsteady. There's a woman in line behind me. How embarrassing would it be if I sat down right now? Or lay down? Coming here was a mistake-- luckily he finishes with the customer and I'm able to lean on the register while he confirms my selection and rings me up. I am feeling foggy and confused.
As I hobble out of the store and back to my car, heart racing, exhausted from my less-than-ten-minute excursion, I wonder if it's time to invest in a cane or walker.
And/or just stay home and shop online forever.
Everything hurts. Music makes things better. Maybe I'll post some tunes later on.
peace,
et
Tuesday, October 15, 2019
Brain Fog on a Log
I should rest. Work was tiring. After work I devoted myself to the Emma-shaped crater in my couch, and watched a movie called I Am Michael which is a good movie but a sad and disturbing true story, about a gay activist who becomes an anti-gay religious nut. It's scary to see internalized homophobia play out to such a destructive degree. Breaks my heart.
My brain is all kinds of fuzzy right now. Fuzzy like a bug... or mold... or something. Maybe a feather. Just really out of breath and twitchy eyes.
We are coming into the season of double socks and gloves and things.
mittens for your kittens,
emma
My brain is all kinds of fuzzy right now. Fuzzy like a bug... or mold... or something. Maybe a feather. Just really out of breath and twitchy eyes.
We are coming into the season of double socks and gloves and things.
mittens for your kittens,
emma
Monday, October 14, 2019
People I Mix Up, Part 1 of Many
Today's musical selection comes from My Fair Lady: "The pain, inflamed, falls mainly on the brain!"
Was able to go to work. There were two or three points throughout the day I considered going home early. Headaches, visual disturbances. Get it together, brain! By the end of the day my eyeballs felt about ready to pop out of my head. Errands were put off to tomorrow. To the couch!
I'd like to invite you into a very serious, very personal sort of post. Throughout my life, I have not had a great track record of distinguishing celebrities. And brain fog does not help my situation. So I am leaning into vulnerability for humor's sake: this is the start of a list of people I have, at one time or another, mixed up. Enjoy.
I'm sure I will be adding to this list. I'd love to hear yours too.
brain cells for everyone! zzz
et
Was able to go to work. There were two or three points throughout the day I considered going home early. Headaches, visual disturbances. Get it together, brain! By the end of the day my eyeballs felt about ready to pop out of my head. Errands were put off to tomorrow. To the couch!
I'd like to invite you into a very serious, very personal sort of post. Throughout my life, I have not had a great track record of distinguishing celebrities. And brain fog does not help my situation. So I am leaning into vulnerability for humor's sake: this is the start of a list of people I have, at one time or another, mixed up. Enjoy.
- Carol Channing / Carol Burnett
- Robert DeNiro / Danny DeVito
- David Bowie / Jon Bon Jovi
- Bon Jovi / Bono
- Jon Bon Jovi / Johnny Bravo
- Koch Brothers / Coen Brothers
- The Everly Brothers / The Isley Brothers / The Righteous Brothers
- Cat Stevens / whoever sings that song about the cats in the cradle and the silver spoon
- Neil Young / Neil Diamond
- Neil Diamond / Neil Simon
- Nina Simone / literally anyone named Nina or Simone
I'm sure I will be adding to this list. I'd love to hear yours too.
brain cells for everyone! zzz
et
Sunday, October 13, 2019
Grace Glides, in Life and Dance
I am not feeling well, but today has been good.
Went to church this morning. A dear friend gave her (amazing) testimony, in which chronic and acute illness play a part. Our pastor gave a powerful sermon to kick off our series on anti-racism and collective liberation. I sat for the songs. Grateful the theatre is set up with some accessible seats this season, minimizing the stairs I need to use to navigate the space.
Spiritual direction is always affirming and beneficial for reflecting and looking forward. Today was sparkly and wonderful. I love seeing how God is present even and especially when I seem to be "stuck." Don't misunderstand me, I don't think my relapse is "from God." I do not believe POTS symptoms occur because God is trying to tell me something or least of all punish me. Bad things happen. Full stop. It sucks. Yet God is with us in it, suffering alongside. This episode of POTS stinks, but there are seeds of beauty planted here. In my suffering there lies an invitation to explore the depths of my humanity, and in so, to connect to that which is divine. I find so much healing, joy, peace, and self-expression in music, dance, comedy, and film.
I shared this dance on my Facebook, and I'll share it again here. This version is a cover by ortoPilot, but the original song is written by Rob Thomas, whose wife suffers from chronic Lyme disease.
Went to church this morning. A dear friend gave her (amazing) testimony, in which chronic and acute illness play a part. Our pastor gave a powerful sermon to kick off our series on anti-racism and collective liberation. I sat for the songs. Grateful the theatre is set up with some accessible seats this season, minimizing the stairs I need to use to navigate the space.
Spiritual direction is always affirming and beneficial for reflecting and looking forward. Today was sparkly and wonderful. I love seeing how God is present even and especially when I seem to be "stuck." Don't misunderstand me, I don't think my relapse is "from God." I do not believe POTS symptoms occur because God is trying to tell me something or least of all punish me. Bad things happen. Full stop. It sucks. Yet God is with us in it, suffering alongside. This episode of POTS stinks, but there are seeds of beauty planted here. In my suffering there lies an invitation to explore the depths of my humanity, and in so, to connect to that which is divine. I find so much healing, joy, peace, and self-expression in music, dance, comedy, and film.
I shared this dance on my Facebook, and I'll share it again here. This version is a cover by ortoPilot, but the original song is written by Rob Thomas, whose wife suffers from chronic Lyme disease.
"Her Diamonds" Dance - Miss Donna's School of Dance
Choreographed by Jana Smith
The arts have always been such a huge part of my life. Watching dance in particular expands my soul and gives my heart freedom to dream of an existence beyond my current circumstances.
Need to lie back down. Wishing you grace that glides on blistered feet.
love,
emma
Saturday, October 12, 2019
Well We Tried
Went to the retreat last night. My first time leaving the tri-county area in a year, since our fall retreat last October. Good to be with friends new and old, but I spent literally almost the entire time lying on the floor with my eyes closed. Just too much chest pain and weakness, too much brain fog to process what was going on. Came home after lunch today (1 day early). Missed exploration labs and (sigh) the annual group picture.
On the drive home I listened to a bunch of punk-pop-alt-grunge-rock (or something else semi-screamy and angry-sounding) and tried to process my frustration with everything. This stinkin' body I'm stuck with! This body I'm living in that's limiting me so much. I'm doing what I can to take care of you, you vile vehicle of my consciousness, and this is how you treat me? Break my heart, why don't you. I want the number for the complaint department. [1-800-SPLEEN ME? I know that number.]
In other news we had Lou's pizza for lunch at work yesterday and I realized what I really need most in the world is a T-shirt that says "Body by Malnati" haha.
Exhausted.
later days,
emma
On the drive home I listened to a bunch of punk-pop-alt-grunge-rock (or something else semi-screamy and angry-sounding) and tried to process my frustration with everything. This stinkin' body I'm stuck with! This body I'm living in that's limiting me so much. I'm doing what I can to take care of you, you vile vehicle of my consciousness, and this is how you treat me? Break my heart, why don't you. I want the number for the complaint department. [1-800-SPLEEN ME? I know that number.]
In other news we had Lou's pizza for lunch at work yesterday and I realized what I really need most in the world is a T-shirt that says "Body by Malnati" haha.
Exhausted.
later days,
emma
Thursday, October 10, 2019
Clouds Roll In
Today was ok. Spent most of the day lying down, resting up to take a shower and do small things that required standing. It's supposed to rain tonight and into tomorrow. It's almost midnight now and I am feeling it. Can't sleep.
I had to give up a show I had been enjoying on Netflix. Got too ridiculous and cringe-y. At a certain point, bad decisions and destructive patterns just aren't funny anymore. I am now in search of a show that is entertaining while featuring main characters are not overly dramatic, manipulative, and with no personal or professional boundaries to speak of. Might start by looking through cartoons and kid shows?
My Aunt Lauren got me a weighted blanket and ice packs. Both therapeutic. Feeling loved. Need some sleep.
zzz,
et
I had to give up a show I had been enjoying on Netflix. Got too ridiculous and cringe-y. At a certain point, bad decisions and destructive patterns just aren't funny anymore. I am now in search of a show that is entertaining while featuring main characters are not overly dramatic, manipulative, and with no personal or professional boundaries to speak of. Might start by looking through cartoons and kid shows?
My Aunt Lauren got me a weighted blanket and ice packs. Both therapeutic. Feeling loved. Need some sleep.
zzz,
et
Wednesday, October 9, 2019
Wildflowers
Today's blogpost brought to you by the sunlight streaming through the window, the sound of the Wailin' Jennys singing and strumming on my Pandora, and the sweet scent of a Maple Pumpkin candle burning close by.
Today has been up and down, but the ups have been great! Opened all the mail! Did all the dishes! Vacuumed etc! I have to lie down between these exertions of energy, but I'm so proud to say for the first time in probably weeks there is nothing on the counter or in the sink waiting to be washed.
Last night I watched a very good movie called Carrie Pilby, about a 19-year-old Harvard graduate who begins to re-examine her ethics and standards for relationships. Especially enjoyable because it takes place in NYC around Christmastime. And quite relevant to me personally because in my online class we just learned about Hume's approach to ethics, that he finds morality in human sentiment (feeling, compassion, empathy) rather than some kind of born-in rational nature of humanity. Reason is a slave to the passions! So long, Plato and Aristotle. Welcome to Modern Ethics. :)
Might ride the bike again tonight if I have energy after my online lecture.
Hoping to go to my campus ministry's (The Inclusive Collective) retreat at Wesley Woods this weekend. Expecting some major weather shifts over the next couple days. Prayers and good vibes appreciated that my body behaves and I can go (along with others in our group who have chronic illnesses).
"You belong somewhere you feel free"
love,
emma
Today has been up and down, but the ups have been great! Opened all the mail! Did all the dishes! Vacuumed etc! I have to lie down between these exertions of energy, but I'm so proud to say for the first time in probably weeks there is nothing on the counter or in the sink waiting to be washed.
Last night I watched a very good movie called Carrie Pilby, about a 19-year-old Harvard graduate who begins to re-examine her ethics and standards for relationships. Especially enjoyable because it takes place in NYC around Christmastime. And quite relevant to me personally because in my online class we just learned about Hume's approach to ethics, that he finds morality in human sentiment (feeling, compassion, empathy) rather than some kind of born-in rational nature of humanity. Reason is a slave to the passions! So long, Plato and Aristotle. Welcome to Modern Ethics. :)
Might ride the bike again tonight if I have energy after my online lecture.
Hoping to go to my campus ministry's (The Inclusive Collective) retreat at Wesley Woods this weekend. Expecting some major weather shifts over the next couple days. Prayers and good vibes appreciated that my body behaves and I can go (along with others in our group who have chronic illnesses).
"You belong somewhere you feel free"
love,
emma
Tuesday, October 8, 2019
Brighter Day
Today was a good day? Or at least a not-bad day?
Went to work and felt fine for most of the day, except for everything seeming intensely bright and feeling vertigo/pre-seizure for 10 minutes or so after lunch. After work I had some energy left, so I rode my stationary bike for 40 minutes! Wow! Like, on the lowest setting, but it was great. My joints are regretting it a little now, but I'm trying to make very intentional healthy choices when I'm able. Trying to eat a lot of superfoods. Take my vitamins. Get exercise, sunshine, social time. Do my breathing. I remember how much hard work it was to get through my years of POTS (2008-2012) and my relapse in 2014-15 when my mom was in hospice. Exercise can be tough and even dangerous at times, but I'm stronger when I do it. And today was a good day. So I did it. :)
Now to watch a lecture on modern and postmodern ethics! While lying down because I am spent.
hume hume pow,
et
Went to work and felt fine for most of the day, except for everything seeming intensely bright and feeling vertigo/pre-seizure for 10 minutes or so after lunch. After work I had some energy left, so I rode my stationary bike for 40 minutes! Wow! Like, on the lowest setting, but it was great. My joints are regretting it a little now, but I'm trying to make very intentional healthy choices when I'm able. Trying to eat a lot of superfoods. Take my vitamins. Get exercise, sunshine, social time. Do my breathing. I remember how much hard work it was to get through my years of POTS (2008-2012) and my relapse in 2014-15 when my mom was in hospice. Exercise can be tough and even dangerous at times, but I'm stronger when I do it. And today was a good day. So I did it. :)
Now to watch a lecture on modern and postmodern ethics! While lying down because I am spent.
hume hume pow,
et
Monday, October 7, 2019
I Am Resilient
I just discovered an amazing artist called Rising Appalachia. Their song "Harmonize" is deeply moving. Moving in that it makes me want to grow. Moving in that it makes me want to dance. I also love their song "Resilient" and this rendition by a women's choir in Santa Cruz:
These lyrics speak to me:
These times are poignant
The winds have shifted
It's all we can do
To stay uplifted
Just taking one day as it comes. Counting my blessings and trying not to get stuck in the quicksand of defeatism.
Today overall has been a decent day. Was able to go to work, go grocery shopping, go for a short walk. I am not terribly comfortable, but I'm not in excruciating pain like last week. The weather makes such a difference.
Still, I face reality. A month ago I was talking about going to Costa Rica for Thanksgiving. At this point, that's out of the question. Maybe next year. Another time, child.
I am resilient
I trust the movement
and perhaps the stillness.
may grace and peace be yours, friends.
emma
These lyrics speak to me:
These times are poignant
The winds have shifted
It's all we can do
To stay uplifted
Just taking one day as it comes. Counting my blessings and trying not to get stuck in the quicksand of defeatism.
Today overall has been a decent day. Was able to go to work, go grocery shopping, go for a short walk. I am not terribly comfortable, but I'm not in excruciating pain like last week. The weather makes such a difference.
Still, I face reality. A month ago I was talking about going to Costa Rica for Thanksgiving. At this point, that's out of the question. Maybe next year. Another time, child.
I am resilient
I trust the movement
and perhaps the stillness.
may grace and peace be yours, friends.
emma
Saturday, October 5, 2019
Thank You For Being A Friend
Grateful for Cranmers, Betsy, and Karen V.
As challenging as it can be to get out of bed, as often as I am fighting back seizure-y symptoms, being face-to-face with friends gives me so much hope and so much life. It's so frequently worth the physical symptoms I have later, to be with people I love. I had been out of the house for four hours today, and now am collapsed on the couch. Will need to get plenty of rest to make it to church tomorrow. Pay to play. #chronicillnesslyfe
Ok, enough screen time. G'night, Golden Girls!
love,
emma
As challenging as it can be to get out of bed, as often as I am fighting back seizure-y symptoms, being face-to-face with friends gives me so much hope and so much life. It's so frequently worth the physical symptoms I have later, to be with people I love. I had been out of the house for four hours today, and now am collapsed on the couch. Will need to get plenty of rest to make it to church tomorrow. Pay to play. #chronicillnesslyfe
Ok, enough screen time. G'night, Golden Girls!
love,
emma
Thursday, October 3, 2019
Candles on a Whim
Squishy heart. Nose is numb. Some blurry vision/visual disturbances. A little short of breath.
I have set up my spot on the couch with all my necessities: giant glass of water. salt shaker. shimmery lip balm (what? I can look fabulous while I feel crummy!). hand cream. tiger balm. ibuprofen. phone. laptop. remotes for TV and roku. pillows. blankets. kleenex. journal. extra socks. sometimes the cat. but usually not the cat. meow.
I rested up to get my hair cut this afternoon. Went next door to Pier 1, mostly for the sparkle, free smells, and the promise of some more human interaction. Strolling through the store I was confronted by this mug. A mugshot!
I felt personally attacked. (haha). Then I realized how exhausted I was and came home and crashed on the couch. Ate dinner. Did homework. Inspired by my earlier adventure, I reorganized my candle collection into highly specific categories like "Trees"... "Reminiscent of a Body of Water"... and of course "Desserts I Can't Actually Eat But Nevertheless Seek To Enjoy, Dammit!"
Hope you find something today to make you laugh.
aromatherapy,
et
I have set up my spot on the couch with all my necessities: giant glass of water. salt shaker. shimmery lip balm (what? I can look fabulous while I feel crummy!). hand cream. tiger balm. ibuprofen. phone. laptop. remotes for TV and roku. pillows. blankets. kleenex. journal. extra socks. sometimes the cat. but usually not the cat. meow.
I rested up to get my hair cut this afternoon. Went next door to Pier 1, mostly for the sparkle, free smells, and the promise of some more human interaction. Strolling through the store I was confronted by this mug. A mugshot!
I felt personally attacked. (haha). Then I realized how exhausted I was and came home and crashed on the couch. Ate dinner. Did homework. Inspired by my earlier adventure, I reorganized my candle collection into highly specific categories like "Trees"... "Reminiscent of a Body of Water"... and of course "Desserts I Can't Actually Eat But Nevertheless Seek To Enjoy, Dammit!"
Hope you find something today to make you laugh.
aromatherapy,
et
Wednesday, October 2, 2019
The World's Greatest (Dental Patient)
Slept 12 hours last night. Ice on chest, for pain/palpitations. Rested up to go to my dentist appointment. My hygienist and dentist say I am the best patient. I love that. I can't control my physical health, but my dental health is outstanding! Cue "My Shiny Teeth and Me"!
I feel called to ministry, particularly ministering with survivors of trauma. As part of my discernment and "research" (if you will), I've been watching a number of documentaries on different topics. Right now I'm watching "Surviving R. Kelly" - the miniseries on the R&B artist and the ongoing, decades-long accusations of his sexual misconduct and abuse of minors. Predatory behavior is disturbing whenever and wherever it occurs, certainly. But I'm deeply bothered by (1) the silence of men in R. Kelly's circles, over a period of many years of very obvious abuse, and (2) the popular "inspirational" image of R. Kelly in songs like "I Believe I Can Fly" and how people denied that a man who could make such a "good" song could be guilty of such despicable crimes like child pornography. Scary too that so many of his victims were/are in Chicago. Too close to home.
I look back and am conflicted over my 6th grade choir's choice, in 2002, to sing R. Kelly's hit "The World's Greatest" for our spring concert. The day camp I worked at (and assisted with leadership of music and dance for) frequently used this song for our all-camp assemblies... in 2006! I hadn't been following the news and allegations surrounding him at that time. But knowing what I know now, we should have picked another song. His behavior was and is shocking and disgusting. I'm proud of the #metoo movement and how successful the campaign has been to #muteRKelly over the last year or two. We need to create a culture where crimes against women are truly unacceptable and justice is served.
One of the symptoms of POTS is dry eyes. Whenever I notice that I need my eyedrops, I dramatically sing "Look, my eyes are dryyyyyy...." from A Chorus Line's "What I Did For Love." Josh Groban videos are pretty schmaltzy, but he has a nice voice. It's as if we aaaaalwaaays kneeeeeew!
Well, time to hit the hay.
Kiss today goodbye!
et
I feel called to ministry, particularly ministering with survivors of trauma. As part of my discernment and "research" (if you will), I've been watching a number of documentaries on different topics. Right now I'm watching "Surviving R. Kelly" - the miniseries on the R&B artist and the ongoing, decades-long accusations of his sexual misconduct and abuse of minors. Predatory behavior is disturbing whenever and wherever it occurs, certainly. But I'm deeply bothered by (1) the silence of men in R. Kelly's circles, over a period of many years of very obvious abuse, and (2) the popular "inspirational" image of R. Kelly in songs like "I Believe I Can Fly" and how people denied that a man who could make such a "good" song could be guilty of such despicable crimes like child pornography. Scary too that so many of his victims were/are in Chicago. Too close to home.
I look back and am conflicted over my 6th grade choir's choice, in 2002, to sing R. Kelly's hit "The World's Greatest" for our spring concert. The day camp I worked at (and assisted with leadership of music and dance for) frequently used this song for our all-camp assemblies... in 2006! I hadn't been following the news and allegations surrounding him at that time. But knowing what I know now, we should have picked another song. His behavior was and is shocking and disgusting. I'm proud of the #metoo movement and how successful the campaign has been to #muteRKelly over the last year or two. We need to create a culture where crimes against women are truly unacceptable and justice is served.
One of the symptoms of POTS is dry eyes. Whenever I notice that I need my eyedrops, I dramatically sing "Look, my eyes are dryyyyyy...." from A Chorus Line's "What I Did For Love." Josh Groban videos are pretty schmaltzy, but he has a nice voice. It's as if we aaaaalwaaays kneeeeeew!
Well, time to hit the hay.
Kiss today goodbye!
et
Tuesday, October 1, 2019
Take a Buzzsaw To My Elbow, Please
I was able to go to work today (yay). With increasing joint pain (boo).
By the end of the day, after writing, typing, answering phones and just being a living human, my right hand and right forearm felt like they were on fire. If I had looked down at the end of my sleeve and spied my sweater was singed, I would not have been surprised in the least. It's a strange pain that I can't really describe. It talks to me. It wants to have a name, like an exotic cologne you could never forget. Burn. Hiss. Turmoil. Havoc. Or like a biblical character or experience. Israel. A wrestling that will leave me marked, and with a new name. Rend.
Today is October 1. Fall is just beginning. I am a person who lives with great hope and still am grounded in reality. I expect my symptoms will continue to worsen as the seasons change and the barometric pressure falls. I was grateful today that my commute home from work is very short. Gripping the steering wheel with my right hand was not going to happen without dunking my arm in my special cologne. Obstruct.
I do not want to leave my job.
Back to the couch. Looking forward to reviewing lots of shows and movies on Netflix. Think I'm gonna ice my arm now.
peace,
et
By the end of the day, after writing, typing, answering phones and just being a living human, my right hand and right forearm felt like they were on fire. If I had looked down at the end of my sleeve and spied my sweater was singed, I would not have been surprised in the least. It's a strange pain that I can't really describe. It talks to me. It wants to have a name, like an exotic cologne you could never forget. Burn. Hiss. Turmoil. Havoc. Or like a biblical character or experience. Israel. A wrestling that will leave me marked, and with a new name. Rend.
Today is October 1. Fall is just beginning. I am a person who lives with great hope and still am grounded in reality. I expect my symptoms will continue to worsen as the seasons change and the barometric pressure falls. I was grateful today that my commute home from work is very short. Gripping the steering wheel with my right hand was not going to happen without dunking my arm in my special cologne. Obstruct.
I do not want to leave my job.
Back to the couch. Looking forward to reviewing lots of shows and movies on Netflix. Think I'm gonna ice my arm now.
peace,
et
Monday, September 30, 2019
Back On the Blog!
Hello dear ones!
I am returning to the art, the joy, the practice of blogging. I have missed connecting in this way.
[Recap: Over the last four years, lots of great things have happened. I graduated with my associate's with highest honors (May 2016). Went to South Africa -- my dream! -- on a study away trip (July 2017). I graduated summa cum laude from my undergrad, Elmhurst College, with a degree in religious studies (May 2018). Admitted to graduate school with a scholarship and completed the first year of my M.Div. program at Garrett-Evangelical Theological Seminary. I've been working part-time for almost 4 years at a company called Housing Headquarters. I'm super involved with my community at Urban Village Church in Chicago, and love being able to serve in a couple of leadership roles, including being a small group co-leader with partner campus ministry the Inclusive Collective. As of May 2019, I am a certified Deacon candidate in the United Methodist Church (on the path toward ordination). Over the past five months I have served as a chaplain intern at a Level I Trauma hospital, and as of last week, I have officially completed one unit of CPE. Hallelujah!]
So much good. And I am so grateful. But throughout all of this, I have had to manage my health. As much as I like to put forth an image that I have fully recovered, the truth is that I am still a spoonie. I truly believe I am "Stronger on the Other Side," yet I still have POTS. Chronic illness, its varied symptoms, follow me like a ghost. Maybe I will write it a catchy theme song, like Casper?
All this to say that I am sorry to report that in the last month or so, my POTS has flared up something fierce. I have been mostly couch-bound the last few weeks. I had to drop a few classes for the semester and hope to complete my two remaining courses online. I have much more to say, but my old friend sensory small-fiber neuropathy is screaming to give my aching hands a break.
More to come soon, as I aim to curate a space of hope and humor, of friendship and faith. Enjoy this song, which always puts me in a good mood! Whitney Houston / Kygo - Higher Love (Remix)
Love love love,
emma
I am returning to the art, the joy, the practice of blogging. I have missed connecting in this way.
[Recap: Over the last four years, lots of great things have happened. I graduated with my associate's with highest honors (May 2016). Went to South Africa -- my dream! -- on a study away trip (July 2017). I graduated summa cum laude from my undergrad, Elmhurst College, with a degree in religious studies (May 2018). Admitted to graduate school with a scholarship and completed the first year of my M.Div. program at Garrett-Evangelical Theological Seminary. I've been working part-time for almost 4 years at a company called Housing Headquarters. I'm super involved with my community at Urban Village Church in Chicago, and love being able to serve in a couple of leadership roles, including being a small group co-leader with partner campus ministry the Inclusive Collective. As of May 2019, I am a certified Deacon candidate in the United Methodist Church (on the path toward ordination). Over the past five months I have served as a chaplain intern at a Level I Trauma hospital, and as of last week, I have officially completed one unit of CPE. Hallelujah!]
So much good. And I am so grateful. But throughout all of this, I have had to manage my health. As much as I like to put forth an image that I have fully recovered, the truth is that I am still a spoonie. I truly believe I am "Stronger on the Other Side," yet I still have POTS. Chronic illness, its varied symptoms, follow me like a ghost. Maybe I will write it a catchy theme song, like Casper?
All this to say that I am sorry to report that in the last month or so, my POTS has flared up something fierce. I have been mostly couch-bound the last few weeks. I had to drop a few classes for the semester and hope to complete my two remaining courses online. I have much more to say, but my old friend sensory small-fiber neuropathy is screaming to give my aching hands a break.
More to come soon, as I aim to curate a space of hope and humor, of friendship and faith. Enjoy this song, which always puts me in a good mood! Whitney Houston / Kygo - Higher Love (Remix)
Love love love,
emma
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