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

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

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