Merry Christmas!

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

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

"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

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

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

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

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

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

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

"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

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

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

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

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

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

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

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

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

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

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