Dysautonomia Awareness Month: What Is Dysautonomia?

On the tails of Invisible Illness Awareness Week comes Dysautonomia Awareness Month. The month coincides with Breast Cancer Awareness Month, which gets much more attention and has many more outlets for awareness (which is A-MAZING for my sweet friends surviving this disease).

So, I am here to do my small part this month in raising awareness of Dysautonomia. I'm here to say that I am committed to increasing my level of work as my physical well-being allows.

I'd like to start out the month with a reminder of what dysautnomia is:

Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.

Blessings,

Emily

New 'Studio' Updates

Goodbye 2008 9 lb. MacBook Pro!

Some things at Dancing Light's Studio were getting a little old and a lot slow. As a result, I wasn't able to blog for a couple of weeks while I waited to purchase a new computer and have the data transferred from the old one.

I've also had a few glitches with blog posts publishing at the correct time. So, if you missed yesterday's Monday Dog Blog, here it is. As for the Dysautonomia post that came in your email boxes, that has been edited and changed. Sorry!

Goodbye iPhone 4s!

I also had a phone that wasn't keeping up.

Wow! What a difference!

When I did blog, I spent a lot of time just watching my computer 'think'. :P

This all was causing me to feel really cut off from the world and frustrated that sometimes loading photos from iPhoto to my blog could take 30 minutes. It took a lot of time and energy to do the shopping, getting set up, etc. so that's what kept me away for so long.

Out With The Old, In With The New

So, I'm really excited to be up and running again for October!

Comparison

It's hard to believe how much technology changes in six years! My old laptop weighed in at almost 9 pounds. I love this new one, which at 3.5 pounds, I can easily carry around wherever I want it. The photos and screen clarity are a wonderful bonus. I don't even notice that the screen is so much smaller than on my previous device.

I do notice, however, how much bigger the new screen in on the iPhone 6 compared the the 4s!

So, I guess I like gadgets. Especially ones that work. I'm grateful and thankful to be able to upgrade to new technology that serves me well and helps me stay in touch with the world.

My next big step, which is slowly in progress, is working with my caregiver every other week to clean out the study, get it organized, put in a new floor, and finally hang photos and art on walls that were painted over five years ago! 

Things happen kind of slow here.

So, for now, I'm just really enjoying my new 'Studio Equipment' that works! :)

Blessings,

Emily

Monday Dog Blog: Learning

G: Look How Good I Am Mommy!

Our Monday nights are big around here these days. 

All four of us head out to participate in an intermediate level training class for the puppies. 

Practicing Walking On A Leash (No UPS Trucks? Piece of Cake!)

Tovah has had three training classes so far--puppy kindergarden twice and an agility class--whereas Gerswhin has only had one class. When we first got Tovah Rose and Gershwin we attended classes, but I still had to sit in a reclining chair most of class and couldn't participate much. This summer, Mom took Tovah Rose to the agility class.

This Fall, I'm able to attend class, but still don't do the walking/standing exercises. While Mom is practicing leash-walking with one dog, I sit on the floor and practice keeping the dogs engaged and able to follow commands in spite of all of the distractions going on around them. I am really, really pleased about being able to go to this class.

Class started out a bit rough with the instructor. I almost left in tears before even starting the class at all. Despite having filled out forms in advance detailing my health issues and how we would make participating in class work, the instructor had not seen the forms yet and/or hadn't read them. When I asked to be seated for class and told her why, she was curt and abrupt. She insisted that she keeps everyone in her class moving and there isn't room for sitting. 

It's these little moments that sometimes make the illness side of things so hard. I think Mom and I showed her how we could fully participate in the class in spite of my limitations, that we were committed to training our puppies, and that we could find ways to make the time I was sitting with each dog meaningful. Now, we are enjoying class much more and the teacher seems to genuinely care about how I'm doing and making class work for me.

Tovah: I'm Not Paying Attention Mom!

My long-term dream goal for Tovah Rose and Gershwin is that they achieve Canine Good Citizen status and that I feel well enough to take them to visit people--either in assisted living facilities, nursing facilities or children's groups. I need a lot more stamina and a lot more time to train these guys, but the goal seems more reachable as I see improvements in health. 

For now, we're taking it one step at a time. Monday nights are a big night out and we all come home EXHAUSTED! :)

Blessings,

Emily

L'Shanah Tovah Part II: Our Dinner

Shabbat Candles and Market Flowers

Because of Jeannine's new job, we weren't able to have dinner at the start of Rosh Hashanah on Wednesday evening. Our holidays aren't the same without her, so we waited to have dinner on Friday at the end of Rosh Hashanah. Our other frequent holiday guest, Marge, joined us, while Barbara will be eating some leftovers from us since she was out of town.

BFFs!

We enjoyed a festive meal of spinach salad, green beans, tzimmes, roast chicken and gluten-free honey cake. Mom made sure that each item had honey in it (even honey-mustard vinaigrette on the salad). Honey is not allowed on the FODMAPS diet, but how does one start the Jewish New Year with no honey, no sweetness? So, I of course decide to partake in the honey-covered foods.

Mom and Marge

For 2 1/2 hours (!!!) we enjoyed each other's company and the wonderful food Mom prepared.

Strawberry Blonde Dress and New Riding Boots

I wore one of my favorite dresses--the passionflower dress made for my by my friend Susannah--as I think it is the perfect symbolic clothing item for the New Year. I also sported my brand new birthday riding boots! (I know, a little early, but Abbie said I could wear them...:))

Gluten-free Honey Cake, Raspberries and um, Cool Whip! :)

I love celebrating the holidays with these wonderful women.

I closed out the evening by resting in bed listening to the Western Wind's Birthday of the World CD.

Our year is off to a joyful start. May we be inscribed in the Book of Life for this coming year.

L'Shanah Tovah!

Blessings,

Emily

L'Shanah Tovah Part 1: Regina Carter in Concert!

Me with Regina Carter!

We started year 5775 on a joyful note: by attending jazz violinist Regina Carter's performance of her new album Southern Comfort. 

A Joy To Talk To Her

As you can see, we got to meet her afterwards and have her sign a copy of her CD. I was the last person in line to talk to Ms. Carter and she didn't rush us one bit! It was exciting to feel well enough to stay after the concert to participate in the after-event signing and artist meeting.

Mom and I Loved Talking To Ms. Carter

We enjoyed the intimacy of the concert and our time meeting Ms. Carter--who was warm, friendly, down-to-earth, and very interesting. I would love to go out to a meal with her and listen to her stories!

Smiling for Brianna!

While I enjoy jazz--particularly going to see it live--I am not very knowledgable about it (I guess I leave that job to Uncle Crazy), so Ms. Carter told me about one of her favorite songs called Emily. Her Southern Comfort album is a beautiful exploration of her heritage so she scatters he performance with stories about the songs. I always feel like I don't 'get' jazz despite my longing to be able to and my four years in jazz band with very amazing teachers--yet I was fully immersed in this concert experience. 

Our New Year's Night Out

I'm also not very good at selfies yet. :) But here is a pic of Mom and I with my new iPhone 6--celebrating the new year with music and joy!

See What Happens When I Put Bri In Charge?!

Of course, we got to see our two favorite people--Brianna and Lisa--as well as the director of our performing arts center, George. I left Brianna in charge of photos while I met Regina Carter and this is what happened...

Here She Goes Again!

As always, we got the best treatment EVER from Lisa, Brianna, Nicole, and George. Even with the many frustrations we face in terms of parking and quality of seating for people with disabilities, we have these wonderful people doing everything to make the experience the best it can be.

During Invisible Illness Awareness Week, one topic was to think of Just One person who has changed your life. There are many, but Lisa is at the top.

New CD

It's so empowering not only to see a female jazz musician, but also one who leads an all male group. I have even teased Wynton Marsalis about needing some women in his jazz orchestra! :) We loved the quintet of violin, accordion, string bass, guitar and drums--and the passionate, lively, interesting, joyful, fun and intimate concert these wonderful musicians gave us.

My Signed CD!

When I arrived home, I was tired, but not sick. I needed no extra meds to fall asleep. And we had our Rosh Hashanah dinner (L'Shanah Tovah Part II!) the next evening. 

We can't think of a better way to have started year 5775!

L'Shanah Tovah to those of you who celebrate!

Blessings,

Emily

Monday Dog Blog: What A Pair

All Decked Out For Labor Day

Last week's Monday Dog Blog wasn't the typical cheerful post, but never fear--we're back to smiles and sunshine here at Dancing Light's Studio when it comes to Dog Blogs.

Treat?!

Every once in a while, I capture a moment when brother and sister are side by side. 

Maybe If We Do This We Can Get a Treat?

It's hard to resist the cuteness factor.

Ah, The Life...

And while most of my photos are taken inside, Tovah Rose and Gershwin love spending HOURS each day outside. Boy, are we ever glad we fenced in our yard. It's hard work for these guys to keep up with all of the goings on in the neighborhood.

Pooped Out, Snuggled Up With His Baby

By the end of the day, they are very, very tired.

Mr. G has been going through a phase (these guys cycle in and out of phases just like kids, I swear!) in which he is less snuggly, and more apt to settle into his crate for a rest. I miss him, but I'm hoping he'll come around again. Tovah Rose, on the other hand, has been extra cuddly lately. Maybe they are trading off who gets more snuggle time? But my lap has room for two, so I hope they figure things out soon.

Happy Monday!

Blessings,

Emily

Just One Thing Friends Can Do To Help

Sedum and Rudbeckia

Being the indecisive person that I am, it's almost impossible for me to pick 'Just One' of anything. So, the challenge of Just One for II Week is a big one.

My friend, Rachel, challenged me with several questions, including: 

What's one thing a friend who lives far away can do for you?

What's one thing a friend nearby can do for you?

Sedum

If I go with what first pops into my mind, it is this:

Read My Blog

Rudbeckia

Perhaps this sounds like a strange response to these questions. And, of course, there are many other incredibly helpful gestures, but I really, really, really love it when people read my blog. I also LOVE reading my friends' blogs. I always feel closer to you when I read your blogs or see you pics on FB, and I hope my blog serves as a way for you to feel closer to me as well.

Why is reading my blog so helpful to me?

When you read my blog, you help me to save energy. I started my blog in 2005 as a way to keep up with people as mass emails became more difficult to do. When you read my blog, you get an update on what is going on and I don't have to repeat it in multiple emails, text messages or FB updates. Most days I am lucky to get emails written at all, so I try to keep up with blogging as much as possible. Saving energy and finding energy for things I need and want to do is one of the biggest challenges, so helping me to save energy means a lot.

Rudbeckia

When you read my blog, you get a glimpse into things I might not otherwise share with you in an email or conversation. You get more depth. You get more honesty. Why? Because I see reading my blog as your choice, on your time. You can choose whether to read the tough stuff or just the fun stuff. It makes me feel less like I am burdening you.

When you read my blog, you honor something that is deeply important to me. I'm proud of my blog and it is incredibly meaningful to me to keep blogging. It's one thing in my life that I've been able to maintain for 9 years now--and it's one of my few tangible forms of accomplishment.

Rudbeckia and Sedum

When you read my blog, you help me to feel like my life matters and my story matters. You also honor a part of me that is not just illness--you honor that I like to write, that I like to take photos, that I love so many other things in life.

When you read my blog, you help me save not just the physical energy involved in texting, emailing, etc. but you save me emotional energy. Sometimes it's unbearable to think of repeating myself over and over again when it comes to medical things or some difficult topics. I want to be able to tell those I love how I am feeling, but I don't necessarily want to repeat it over and over again.

When you read my blog, you help me to be a better friend to YOU. How? If you've read my blog, you're up on some of the medical junk and emotional stuff that is happening in my life. So, I'm more ready to focus on you. And I'm more ready to engage in other topics that are unique and personal to my relationship with YOU--discussing spiritually with you, the books you are reading, getting caught up on YOUR LIFE. Most importantly, we can just let our conversation flow to what matters to US in the moment we are connecting, rather than trying to get caught up on more generic topics that I've shared here. 

Rudbeckia and Sedum

When you read my blog, you bless me with the gift of your time and energy.

And while it is not at all a necessity, I LOVE when you respond to my posts! It makes my day to know you've hit the Like button on FB or to get a FB, blog comment, or email in response to a  post. I love knowing how different blog posts affect you (or don't), which ones you enjoy (or don't), and just knowing you are 'out there'. 

Now, let's be clear here: I'm not saying you need to read every word of every post. I'm just saying, I love it when you check in, skim, follow posts. I know that we all need breaks, we all get overwhelmed and we are all super busy, so I'm not trying to say you need to be the 'perfect reader' here.

Sedum and Rudbeckia

There are many, many gestures--big and small--that are helpful. I am often asked how you can help, but it's so very hard to ask for help. In the future, I hope to write a post of simple ways that you can help.

For now, I choose: Read my blog.

Blessings,

Emily

Meme: 30 Things About My Invisible Illness You May Not Know

As part of Invisible Illness Awareness Week (IIWeek), I've taken some of the challenges, including this 30 things Meme. We're encouraged to make this list yearly as part of IIWeek, but I have not done it since 2009. Here is a link back to that first list (and only list) I made. I have yet to re-read it myself. I remember how painful it was to write, but how powerful it was to share it.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Dysautonomia (also known as Autonomic Nervous System Dysfunction). I have two forms: Postural Orthostatic Tachycardia Syndrome and Neurally Mediated Hypotension. I also have Chronic Fatigue Syndrome (CFS/CFIDS), which often overlaps with Dysautonomia; Gastroparesis, which means I have slow stomach motility; and Thoracic Outlet Syndrome (TOS), which causes neck pain, arm weakness, and an inability to lift my arms above my head.

2. I was diagnosed with it in the year: My first diagnosis of POTS came in 1999. My most recent diagnosis of TOS came in 2013.

3. But I had symptoms since: It's hard to know. During the beginning of my sophomore year of high school I missed almost 2 months of school due to a mystery illness. Looking back we wonder, was that the beginning of my struggles with Dysautonomia? 

In college, I came down with mono after at the end of my first semester of college. Had it not been for a roommate (Loralea) who made my bed, took my laundry to and from the laundry service, asked hall mates to quiet down so I could sleep, and a major cutback in extra-curricular activities I wouldn't have been able to return to school. Was this the beginning of my Chronic Fatigue Syndrome? 

By the end of college, I was doing two things: sleeping and studying. One month later, on June 18, 1998, I became completely incapacitated by symptoms of CFS and Dysautonomia. I have never recovered to my previous levels of functioning.

Dahlias

4. The biggest adjustment I’ve had to make is: getting used to the loss of freedom in every capacity of my life--from driving to financial independence to the freedom to move in my body to the freedom to be spontaneous to the freedom to live independently to the freedom to get lost in time to the freedom to eat certain foods.

5. Most people assume: That when I look good, I feel good. That if I look good, I am symptom free. That I have a lot of time on my hands. That my life is not stressful. That I can't figure out how to 'fill my time' because I have 'so much of it.'

6. The hardest part about mornings are: Missing out on them. My alarm goes off at noon. The only 'morning' I know is the wee hours of the morning--when I'm listening to an audiobook at 1 AM, or turning my light off sometime around 2 AM. When I do get up in the morning, even with a nap later in the day, I feel sicker the rest of the day.

7. My favorite medical TV show is: I don't watch any medical dramas. The medical drama of my life, and that of my friends, is enough. :)

8. A gadget I couldn’t live without is: I LOVE gadgets. I'm a gadget girl. I've found that gadgets, when used well, enhance my life--I really do love my laptop, my iPad, my iPhone, my camera, my iPod, my TV, and my adjustable Tempur-Pedic bed. :)

Market Bouquet: Dahlias, Gladiolas and Lemon Verbena

9. The hardest part about nights are: That I have such difficulty falling asleep, so am up until the wee hours of the morning, which can be a lonely time. I try to savor the quiet, cuddle with the dogs and listen to a lot of audiobooks. I don't sleep well at all and tend to be restless all night long--aware of my dreams and of being in and out of sleep.

10. Each day I take 38 pills and vitamins. (No comments, please): 27 of the pills I take are pharmaceuticals, 11 are supplements. I also take one liquid medication four times daily. It's important to remember, I think, that many of the medications are needed multiple times a  day so, for example, I take midodrine every 3 hours 4x/day. This adds up to 11 of my 27 pills. 

11. Regarding alternative treatments I: find some to be very helpful, and some to be not at all helpful. I'm a careful consumer. I'm a fan of massage (static myofascial release, lymph drainage, zero-balancing, etc.), acupuncture, naturopathy, using food for healing, aromatherapy, and some supplements. 

12. If I had to choose between an invisible illness or visible I would choose: If I'm going to feel this 'unwell' either way, then I would choose invisible. It's one less battle to fight sometimes. If the illness was visible, but less life-altering, I'd pick visible.

I Love Dahlias!

13. Regarding working and career: I will cross that bridge if it comes my way. Until then, I will write and live my life to the fullest. As my dad says: "the last thing I need to be worrying about right now is working." 

It upsets me when people ask me what I will do when I get better or if, now that I am feeling better, I am able to work. More than anything I want to reach a place of being independent as much as possible--preparing my own food, keeping up with my own laundry, taking care of the dogs, etc.

Working and career are far from my mind--not because I have no ambition, but because my ambition has changed with being sick. Right now, being sick, living well with illness, and doing all that I can to maintain/improve my health is a full-time job.

A Sprig of Lemon Verbena to Add Fragrance. Glorious!

14. People would be surprised to know: that I still wake up every day a bit surprised that I am sick. And that I really like to use swear words to let out steam. Even the F-word.

15. The hardest thing to accept about my new reality has been: missing out on the life transitions and events that most people my age experience--jobs/careers, marriage, family, home ownership, travel, etc.

16. Something I never thought I could do with my illness that I did was: Have this much perseverance and resilience. 

17. The commercials about my illness: Yeah, right. Until this illness is taken seriously or there is a blockbuster medication for it, no commercials will exist.

18. Something I really miss doing since I was diagnosed is: getting lost in time no matter what it is I am doing--feeling free in my body to get lost writing, walking, dancing, creating.

Think I Need to Grow This!

19. It was really hard to have to give up: being a mom

20. A new hobby I have taken up since my diagnosis is: Blogging

21. If I could have one day of feeling normal again I would: Spend it with those I love most--laughing a lot, eating wonderful food, having an alcoholic drink, being at a location by the water, engaging in a fun physical activity like swimming with the dolphins, scuba diving or a hot air balloon ride, watching the sunset, and dancing to great music. 

22. My illness has taught me: a LOT about gratitude; the importance of and value of nourishing and maintaining relationships; that someone may be suffering on the inside even though it might not be immediately apparent...and about a bazillion more things! 

23. Want to know a secret? One thing people say that gets under my skin is: "You're too young to be this sick." That, and just about any platitude!

24. But I love it when people: Take time out of their busy lives to slow down and send snail mail, a text, an email, recommend a book or music, or send a surprise gift; read my blog and comment on it; listen; show amazing grace and compassion; find a way to include me in their lives--even if it looks different than we had hoped or wished (i.e. a video from my niece Lana in place of me being able to visit her in person; being asked to be a bridesmaid even if I can't attend; taking pictures of an event for me that I wish I could attend, etc.); go the extra mile to make a get-together happen (anticipating dietary restrictions, the time of day I am awake, or coming over to my house so I don't have to get a ride).

25. My favorite motto, scripture, quote that gets me through tough times is: "Dance is the hidden language of the soul." --Martha Graham-- and "Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all." --Emily Dickinson--

Gorgeous Bouquet

26. When someone is diagnosed I’d like to tell them: "Don't take no for an answer. Listen to your body," as a wise doctor told me six years into my illness and "You're not alone." I'd like to be able to say that getting diagnosis and treatment has gotten easier since I first got sick 16 years ago, but it hasn't. So, I offer my compassion, my friendship, and my listening ear, and any tips I can offer to make her journey easier.

27. Something that has surprised me about living with an illness is: How freaking hard it is--emotionally and physically. And that it is a full-time job!

28. The nicest thing someone did for me when I wasn’t feeling well was: People lift me up in different and unique ways--I can't pick the 'nicest' one. My mom always makes me homemade chicken soup. :)

29. I’m involved with Invisible Illness Week because:  I think it matters. I want to find ways to advocate more for others. Invisible Illness is still so completely invalidated and misunderstood. 

30. The fact that you read this list makes me feel: grateful, humbled, happy, blessed.

Blessings,

Emily