Happy Halloween!

Mom's Dress Reincarnated

I pulled out Mom's one remaining dress from the 70's for Halloween this year. How fun to be able to dress up this year! 

We also found a way for me to hand out candy, all while sitting down. 

It's Hard to Get Butterflies to Hold Still!

On Tuesday night, Jennifer, Mark and Allison stopped by for a 'practice round' of Trick or Treating, since Mark had to leave town and didn't want to miss seeing his little purple butterfly all dressed up for Halloween. (I know, time for the 'that is sooo sweet *sigh*).

A Very Joyful Purple Butterfly

We had about 45 trick or treaters this for Halloween this year, and lots of little ones we know. All of them are old enough now, though, to know that speed matters in making the rounds to get as much candy as possible, so I didn't get to take any photos!

All Tuckered Out: Tovah Likes to Make a Little Nest in the Back of her Crate.

It's hard to believe that last year at this time we had only had Gershwin for a couple of weeks, and the puppies just hung out in a little X-pen during Trick or Treat. This year, they had LOTS to say about all of the commotion. And were very tired out afterwards!

Flashback: 1995!

My friend, Susannah, posted this photo of me dressed up for a 70's party during our sophomore year of college more than 18 years ago! The dress fit a bit more, um, comfortably back then. And I looked a lot younger!

Hope you had a safe, fun and happy Halloween!

Blessings,

Emily

POTS and NMH

Lilly Pond at the Arboretum

Since it's Dysautonomia Awareness Month, I thought I'd continue to share a little more about the nitty gritty of these illnesses.

Dysautonomia, as I posted earlier, is a dysregulation of the autonomic nervous system. It is an umbrella term that encompasses several different types of dysfunction.

I have two types of what is called Orthostatic Intolerance: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH).

Those of us with OI like to joke that we are 'allergic to gravity!'

The most helpful document I could find explaining these illnesses is available on the CFIDS Association of America website. I highly recommend this for any doctors who find themselves seeing a patient with dysautonomia, for new patients, or even for those of us who have been sick for a long time and need a refresher course. There is also a webinar and slides by Dr. Peter Rowe available. Many other resources are available, and I will share those in a separate post.

Orthostatic Intolerance (OI) is defined by Dr. Peter Rowe at Johns Hopkins University Children's Hospital as:

"an umbrella term for several conditions in which symptoms are made worse by upright posture and improve with recumbency."  

Both NMH and POTS are forms of chronic orthostatic intolerance. As Dr. Rowe states: 

"Hypotension is the medical term for low blood pressure (BP), and tachycardia is the medical term for an increased heart rate (HR)."

Quoting directly from Dr. Rowe's written materials on the CFIDS site:

Postural tachycardia syndrome refers to an exaggerated increase in heart rate with standing. A healthy individual usually has a slight increase in heart rate—by about 10-15 beats per minute—within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats per minute, or if it reaches 120 beats per minute or higher over the first 10 minutes of standing, accompanied by orthostatic symptoms. POTS is an abnormality in the regulation of heart rate; the heart itself is usually normal.  

As for Neurally Mediated Hypotension (NMH), the Mayo Clinic describes NMH as "low blood pressure from faulty brain signals".

Dr. Rowe describes it as follows:

Neurally mediated hypotension refers to a drop in blood pressure that occurs after being upright. We define NMH by a drop in systolic BP of 25 mm Hg (compared to the BP measured when the person is lying flat) during standing or upright tilt table testing. Although NMH may be slightly more common in people with a low resting blood pressure, most people who develop NMH during standing have a normal resting blood pressure. NMH is an abnormality in the regulation of blood pressure during upright posture. It occurs if too little blood circulates back to the heart when people are upright, a situation that can trigger an abnormal reflex interaction between the heart and the brain that results in a lowering of blood pressure. NMH is sometimes known by the following names: the fainting reflex, delayed orthostatic hypotension, neurocardiogenic syncope, vasodepressor syncope, vaso-vagal syncope. Syncope is the medical term for fainting. 

As Dr. Rowe states, it's also important to note:

Some patients with POTS in the first 10 minutes of upright standing or tilt testing will go on to develop NMH if the test is continued; the two conditions often are found together, and they are not mutually exclusive diagnoses. 

Upon standing two things happen to me:

1. My blood pressure drops

2. My heart rate increases

In my next awareness post, I'll explain how this is diagnosed. In general, because I have so many different symptoms and am not strictly a POTS patient or NMH patient, we refer to me as having Autonomic Nervous System (ANS) Dysfunction or Dysautonomia.

Blessings,

Emily

Note: This post accidentally went out on Monday at the same time as the Monday Dog Blog. Both are now up on my blog, if you click the hot link in the email. Also, any YouTube videos do not show up if you are an email subscriber, and you must click the hot link to go to my blog to view videos. Thanks!

Creating Community

Super Women! :)

I wanted to do a little something fun for my birthday and Halloween with a group of women all my age. Before I got sick we loved having people over and hosting things. This may be the biggest event yet in 15 years!

Twelve women were here--many of them neighbors, but also other women I have been getting to know. Sarah also generously travelled to join us!

Waiting for Sarah's Chocolate Torte!

Company was here from 1:00 to 5:00 and I was able to ENJOY it fully! Thanks to all of the spouses for watching the kiddos while we women gathered for some serious chocolate indulgences.

Halloween Chex Mix (Sugar Coma?!)

We served lots and lots and lots of chocolate goodies including a torte Sarah made, chocolate chip espresso cookies, chocolate chip bars, brownie bites and even chocolate tortilla chips! We added in some Halloween themed Chex Mix and some fruit. Lots of hot tea and cider were also consumed! We managed to make everything GF and vegan.

GF, Vegan Brownie Bites

I owe an amazing amount of gratitude to my mom for making the entire party happen. She picks up, cleans up, sets up, and just keeps things running. She also helped me bake everything.

GF, Vegan Chocolate Chip Espresso Cookies

In counseling, I've continued to talk about finding meaning in my life. Something I really enjoy doing is creating a sense of community, and I've been working to understand the value that this holds. 

She said to me last week: maybe your job is simply to be a light in this town at this moment in time.

Back Row (L to R): Barb, Danielle, Anissa, Catie
Middle: Jennifer, Jeannine, Andrea, Dana
Front: Karen, Me, Sarah, Rebekah

I feel so alive this year and I wanted to celebrate it with a group of wonderful, beautiful, smart, funny, kind women who have helped me to find a new community right here in town. We all so enjoyed being together! 

Thank you Karen, Sarah, Rebekah, Jennifer, Jeannine, Andrea, Dana, Barb, Danielle, Anissa and Catie! We missed you sweet Ellen! 

Here's to 30 something! :)

Blessings,

Emily

Monday Dog Blog: Car Rides and Stairs

Look! G Writes Me Notes!

I woke up one morning last week to this note. 

Tovah Rose caught on to going up and down the stairs very quickly, but Gershwin has been afraid to go down them regardless of the different methods we tried. He flies up and down the four stairs to the back patio, but he won't do the full flight to the basement.

Mom lured him using some liver treats that he desperately wanted. Once he got down the first step, he suddenly decided he could do the whole flight! 

I'm not sure what clicked for our little guy, but he is so very proud of himself. He's been going up and down, and up and down, and up and down the stairs every day now. Just because he can. :)

Here's a video of our proud little guy.

Come On, Mom! We're Waiting!

Our little ones also seem to be learning what it means to go for a walk and anticipate it. 

I enjoy every moment of watching things 'click' for them, how differently each dog develops and how excited they are about new things.

Car Ride

We all took a ride together! :) I loved how everyone just laid down in the back seat side by side and enjoyed the ride. I was so happy to be able to take everyone along.

Fall in PA

It was a big week for G, because he also made an entire car trip (and a long one) without throwing up. He still needs a Dramamine, but he's getting better. And, as you can see, the roads we travelled are pretty windy. 

The Last of Fall

All of us went together to Asher's acupuncture session--which is a bit of schlep to get to, but a gorgeous drive. 

Acupuncture!

The veterinary acupuncturist is amazing, but poor anxious Fuzz Face has a really difficult time settling down and keeping the needles in!

We're still holding our breaths for significant improvement in our guy.

I'm All Fresh and Clean and Handsome!

We got to spend a couple of days with Asher Dasher before he headed back for more convalescent care at D and A's, where he continues to get exceptionally spoiled and loved. After two months of not being well enough for his grooming appointments, he got a bath, toenail clipping, and brushing. We can see his soulful big brown eyes now. 

I wonder if dogs feel as good after a haircut as we do? 

Happy Monday!

Blessings,

Emily

Our Tree

Maple Tree in Our Front Yard

Our maple tree looks spectacular this Fall.

Blanket of Leaves

It's also dropping leaves very quickly.

Raking!

As a jogger passed by she said to Mom: It looks like the tree is winning! :)

Blessings,

Emily

Pumpkin Carving

Pumpkin Master!

Pumpkin Masters Carving Kits can make even the creatively challenged look talented! 

I got to carve a pumpkin today. Another thing I LOVE doing and haven't been able to do in over a decade. 

Jeannine took the afternoon off of work, we had lunch together here, and hung out and chatted while I carved the pumpkin and she did another craft. It felt like 'the way things used to be', and it was a happy day.

Blessings,

Emily

MCC, Shawn Colvin...and Lisa Does it Again!

Flowers

River starts with a drop of rain

Somewhere in this world

Light years shape this arc of sky

And sand a precious pearl

And you will light a stranger's life

By letting yours unfurl

And on and on it goes...

--On and On it Goes by Mary Chapin Carpenter --

The Stage

Mary Chapin Carpenter is my favorite singer-songwriter. I saw she was going to be in town for a performance around my birthday this year, and knew exactly what I would be asking for from Mom for my birthday!

Another Concert Outing!

In college, my friend Lauren walked down the dorm hallway one day, handed me the CD Stones in the Road and said: You need to listen to MCC! Over the past 18 years I've grown to love the authenticity and honesty of MCC's lyrics, as well as her melodies, voice and guitar playing. 

MCC and Shawn Colvin

Carpenter and Colvin alternated between playing individually, harmonizing on each other's songs, and doing some classic songs such as Merle Haggerd's That's The Way Love Goes. It was a very low-key intimate concert with lots of storytelling about songwriting and their life journeys. 

For 2 1/2 hours without intermission MCC and Colvin sang a set of songs that included Transcendental Reunion, He Thinks He'll Keep Her, Sunny Came Home, I Feel Lucky, Twilight, I Have a Need for Solitude, This Shirt, That Don't Worry Me Now, and a new unreleased song by MCC called Hand on My Back.

One bummer about the handicapped seating is that it is in the very back of the auditorium, and this is the type of concert that we would have enjoyed being much closer to the performers! Never fear, though, we brought our binoculars! :)

My Favorite MCC CD

In addition to loving Carpenter's early songs like Passionate Kisses, Grow Old Along with Me, and He Thinks He'll Keep Her, one of MCC's later albums, The Calling became my favorite. It came out at a time when I was often sick in bed, unable to do more than just listen to music and rest and was searching endlessly for meaning in my life. I still turn to this CD over and over again. And while it's an older song, Passionate Kisses has recently felt like an anthem encouraging me to embrace life more.

Me, Lisa and her staff (including her daughter, Brianna, who is standing right behind me on my left)

When we rolled out of the auditorium after the performance we found all of the staff standing around in a group with Lisa. Honestly, I thought they were just waiting for us to hurry up and leave because we were one of the last people out of the auditorium.

But, no! Lisa had them ready to sing "Happy Late Birthday to Emmypoo" and a bouquet of flowers!  She. Is. So. Sneaky! I anticipate Lisa's new version of Happy Birthday will be a Grammy winner. :)

Flowers from Lisa and Her Staff

I know Lisa really wanted to make it happen for me to meet MCC and wasn't able to. 

Still, I was able to give a card to her to pass on to MCC and hopefully she'll read it. Honestly, the birthday singing by Lisa and her staff was just as fantastic of a surprise and so full of love. The flowers are on my dresser, reminding me of a great night of music, and a group of wonderful people who make my life better. 

I thought the serenade was the perfect topper to the night. It reminds me of MCC's song. Lisa has touched my life simply by letting hers unfurl. She was a stranger, but now she is my friend.

Blessings,

Emily

Monday Dog Blog: Gotcha Day and More Bravery

October 21, 2012

It's hard to believe this sweet little guy joined our family a year ago. His Gotcha Day is October 16th, but here's a photo from exactly one year ago today. 

Our Mr. Cuddles All Grown Up

Mr. Cuddles has a new habit of asking Mom if he can get up on her lap after dinner and snuggle. In the mornings, he runs outside to potty, comes back to the door, bounces up and down on his pogo stick legs and basically demands that Mom sit down on the sofa for cuddle time. Tovah Rose has now taken to asking for the same thing. So, many mornings while I am still asleep, Mom can be found with two puppies snuggled up against her, sipping her coffee, reading the paper, looking out at her garden and taking a moment of calm before her busy day.

Tovah Rose's After Dinner Nap

All settled in after dinner. Tovah Rose doesn't want to be left out.

Shoe Casualty

So, we went out on Saturday night. I wore dress shoes, which I rarely do. (I've had this same pair since college.) I, flake that I am, left my shoes on the floor when we got home only to discover a short time later that Miss Piss and Vinegar had found herself a treasure. And that I'm out a shoe.

Asher is a Trooper!

Asher, who had his plasma injection on Monday, earned himself another certificate of bravery. He's always such a good guy for the vet. The vet recommended that we do all that we can to help the tendon  heal as well as avoid re-injury. This means NO playing with the puppies or running in the yard! So, we decided that he'd spend some time convalescing at D and A's. Abbie spoils him rotten and he keeps Dad great company in his study, so hopefully it's a good set up for all involved. 

We just don't know yet if the injection took or how healing will go. We saw a veterinary acupuncturist on Friday. Asher will do PT this week and acupuncture again. We just hope so much we can improve this guy's quality of life. 

Happy Monday!

Blessings,

Emily

B12 Magic Bullets

Ready for B12

Many people have been asking me what I think has led to me feeling so much better the past several months.

The clear resounding answer is: B12 shots! 

B12 injections are a fairly common treatment for CFS. I've been taking high doses of oral B12 with some success, which made me curious about trying the injections. Dr. ANS was all for such a simple and safe intervention.

I inject 1000 mcg of B12 into my thigh twice weekly.

The Bee's Knees

I started the shots in April, and in a very short amount of time started feeling more energetic, both physically and cognitively. The dose, originally at once weekly, would wear off before the next dose, so we increased to twice weekly. 

The very good news about B12 shots is that they don't seem to lose effectiveness over time. As Dr. ANS says: I don't need to be worried about a finite number of magic bullets in those syringes! 

It's really that simple and straightforward as to what most influenced my improved quality of life. 

B12 is the bee's knees.

Blessings,

Emily

Birthday

Alaskan King Crab Legs with Jeannine!

I definitely managed to stretch out my birthday celebrating! I think I may still be recovering! :)

After our Beethoven concert outing, I spent my birthday just chilling at home with Mom and the pooches so that I could take phone calls, open packages, read texts and email, open cards, and recoup from the concert. In the afternoon we were able to spend some time baking, which is one of my favorite things to do and something I haven't been able to do for a long time. We tag team, so that I can do everything sitting down. My day was about embracing the simple pleasures and the people in my life.

On Friday, Mom and I had really hoped to go to a state park to see the leaves, but the weather hasn't been too cooperative here. Instead, we drove to a small town about 45 minutes away, went to a new little art gallery there, and stopped at the cute coffee shop. By the time we left and came home, we were gone for about three hours. Another type of outing I could not have imagined even a year ago. When I woke up on Friday, Mom had placed a menu on a wipe board with outings to choose from. :)

I pushed it pretty hard the entire weekend, just desperately wanting to soak in life. I took a couple of days off from PT, counseling, massage, and other medical stuff just so that I could be with my family and friends.

Birthday Dinner!

On Saturday, Dad and I had our outing to Barnes and Noble. I'm not sure Dad quite understood my overwhelming excitement over being able to go to the card and calendar sections where I was able to pick out wedding cards, baby cards, and my 2014 (!) purse calendar. Usually, these are things that Mom has to shop for and pick out for me. Just the freedom to do this myself felt amazing. We topped our afternoon off with coffee (pumpkin spice latte for me) at the Starbucks inside the store. That evening, at The GREATs, we watched some football. :)

By Sunday, I needed to chill, so I spent the afternoon engaging in the simple pleasure of writing Halloween cards to my nieces and nephew. Snail mail--another one of my favorite things to do that I've missed so much over the years. I had two pups and an old man to keep me company.

On Sunday evening, Jeannine came over for Alaskan King Crab legs that had been flown in FRESH to our Wegman's! Delicious. We had a lovely evening hanging out, and I sat at up at the table instead of in my recliner. For dessert? Gluten-free, dairy-free chocolate cake with mocha icing and Cool Whip. And I must say, even Mom and Jeannine enjoyed the cake, it was that good! This also means that my stomach has been cooperating more and more lately. 

On Monday, Rebekah took part of Columbus Day off and we went OUT to lunch! Yes, OUT to lunch. At a place that makes gluten-free pizza too. I maxed out my upright time to do that, but I relished the ability to go out for lunch. 

I topped everything off with a haircut on Tuesday.

At PT today, I complained to Ray that I was feeling pretty wrung out and tired. I wonder why?! :) 

My birthday felt just right this year. I got to spend time with Dad and Abbie, Mom, and Jeannine in all the ways I most wanted to. I got to spend time with a friend on Monday. 

And. All. Of. You. YOU. Spoiled. Me. 

Thank you so much for the blessings, the love, the Facebook messages, the texts, the calls, the singing, the cards, the flowers and the gifts. Just today someone told me how amazing I am and how I inspire her. In return, I said that in reality, I'm immeasurably blessed in this life, in spite of the suffering.

My hope for this year? To continue to be able to enjoy the simple pleasures of family, friends, dogs, outings, television shows, books on CD, food, nature, blogging, music, and the many wonders of this thing we call life.

Blessings,

Emily