Monday Dog Blog: Small Claims Settlement

Snuggle Bug

Hey! 

It's Gershwin here this week, squeezing a blog post in at the midnight hour. It's been busy at our house with remodeling and puppy class, so I haven't had as much time to type!

What I'm here to tell all of you is that, after all that happened with the groomer and our awful ear infections, Mommy and Mom filed with the small claims court.

Tovah Rose and I couldn't blog about it because we didn't want to risk Mommy's chance of getting a settlement. 

I am happy to report that Mommy was able to recoup the vet bills plus the court filing fees. The only money she didn't recoup was the grooming fee. This is a huge financial stress lifted.

Many of you continued to ask how we were all doing and if Mommy and Mom planned to take any action against the groomer. Because the groomer had been alerted to my post on Facebook about the situation, I could no longer elaborate on what the plans were.

We're all very relieved to have this behind us. Mommy was able to settle with the insurance company and avoid having to go to small claims court. 

Mommy still feels guilty about what happened, but she also says she has learned a lot from the experience. 

Please, please, please triple check a recommendation to a new groomer. Document everything. Ask on Facebook for people's experiences. Look on review sites. Talk to the dog people in your town. Specify exactly what you want and do not want done when your puppy is groomed.

We live in a small town and Mommy trusted the recommendation for this groomer (since it came from another groomer). 

Mommy did try to work out an agreement with the groomer, but it wasn't possible. The last thing she wanted to do was take someone to small claims court. But we all knew she was doing the right thing. If you ever find yourself in this type of situation, please stand up for yourself and us puppies! We don't want other dogs to go through what we did.

Thanks for all of your support during this stressful time!

Happy (belated) Monday!

Blessings,

Gershwin and Tovah Rose

Blogging Help?

Hello Faithful Readers!

I'm here feeling a bit frustrated after spending over an hour trying to figure out how to upload photos to Blogger from Photos.

I've been behind on upgrading the software on my computer and finally went from Mountain Lion to El Capitan.

After over an hour of Googling and trial and error, I have been unable to find a way to get photos into Blogger.

If anyone can help me with this I would be eternally grateful!

I've got Monday Dog Blogs, Dysautonomia Awareness Month, Path to Healing and Birthday posts spinning in my head!

Thank you!

Emily

The Path to Healing

October 11, 2015: Lily Pond at Arboretum

When trying to focus my blog posts for this month, it seems the most pressing question from folks is: what has created such a major turn around in my health over the past couple of years?

In looking back at my blog over the past three years, it looks like I virtually stopped posting major medical updates, challenges, trials or tests in January of 2012. Of course, I keep 'meaning to update' on what has transpired in the past three and half years, but the thought of doing so often leaves me overwhelmed. Brain fog and difficulty concentrating are still major symptoms for me. Each individual change or step forward didn't seem as big of a deal as it does now when I look at the cumulative effect of the changes my medical team and I have made. 

Add in the fact that in July of 2012 we brought home fur baby Number One, and in October of that year we brought home fur baby Number Two, it's clear my blogging took a back seat to those little ones.

One of My Favorite Spots at the Arboretum

I'd like to try to break down the changes into more than one blog post, but start here with a summary of what has transpired, and where we left off in 2012.

This is a detailed and complicated post. I don't know how else to approach my journey. Because if it's been anything, it's been complicated, complex and challenging!

I have provided brief summaries of the posts from earlier, along with a hot link to each one, for those of you want to refresh your memory, learn more, or explore things for yourself.

In January of 2012 I posted "13 1/2 Years Later: What Is This?" in which I wondered how, this many years into my illness, we still didn't have any answers, helpful treatments or understanding of the underlying cause of my symptoms. I was still being treated for Lyme disease and other co-infections along with trying to manage my ANS symptoms as best we could.

I was functioning in what my Lyme doctor, Dr. Complex, called 'an enormous status quo'. 

Shortly thereafter, I began the difficult journey of what I called "Paradigm Shift,"--working to accept the life I had been given, accepting my limitations, and living the best life I could within those limitations. It was a truly dark time in which I started to believe strongly that healing would not happen.

As I spent much of my emotional energy on this paradigm shift, I also went to see both Dr. ANS/Rowe and Dr. Lyme/Complex at the end of February 2012. 

It's funny how just as I was letting go of the thought of healing, unbeknownst to me, I was just about to begin finding some long-awaited answers and treatments to improve my quality of life.

During this 2012 visit, which I wrote about in the post "Out of Dissonance Comes Discovery," Dr. ANS said that he teaches his students that out of dissonance comes discovery, meaning that in my case he asked: "what doesn't fit with any of my other CFS and ANS patients?"

Looking back, I believe those two appointments in February of 2012--one with Dr. ANS and one with Dr. Complex--were the turning point in my path towards healing.

We, as a team, decided to discontinue the Lyme treatments. I have continued taking some supplements that I found helpful, but at that time I stopped treating for any type of infection. We felt that seven years of treatment was enough. (I remain agnostic about whether or not I did or did not have an infectious illness, but I'll save that for another time!) 

When Dr. ANS asked what made me different from ALL of his other patients, declaring me an 'n of 1', he felt that it was 1. my neck pain, 2. my lack of lightheadedness to the degree that other POTS patients experience it, and 3. my ANS response in general.

Dr. ANS does a very unique and thorough physical exam, including some neurological tests. He declared at this 2012 appointment: "this is NOT an normal neurological exam." An anatomical abnormality might cause such persistent symptoms because something (whatever it is that is going on) is causing a constant agitation of the ANS, never allowing it to calm down even with treatments aimed at doing so.

After the appointment it was hard to imagine pursuing new diagnosis almost 14 years into being sick. It was hard to believe we might be, in some ways, starting from scratch. Dr. ANS couldn't assure me that any of our new paths would lead to answers or be a 'slam dunk'. He encouraged me to approach the testing and new medications at my own pace--the pace I could manage emotionally.

At that 2012 appointment, I remember Dr. Rowe pointing to my HUGE medical file and saying he felt as if he looked through all of our exchanges, he'd keep coming back to my neck. Something is going on with my neck.

In "What The Neck Is Going On," I discussed the many ways we had previously explored possible causes for my neck pain--from cervical stenosis to chiari malformation. 

What we had not yet explored were some even more unusual anatomical abnormalities.

By June of 2012, I had gone through another series of MRIs--a thoracic one, as well as one of my neck in flexion and extension (one of the worst tests I've had to date!). Despite how much the MRI in flexion and extension caused a symptom flare and pain, it did not show anything but a beautiful looking spine with no compression. I discussed the details of this testing in "Dissonance or Discovery?"

Our next step was for me to see a vascular surgeon specializing in something called Thoracic Outlet Syndrome.

And this, it seems, is when I virtually stopped posting about what I was doing medically, other than a couple of posts on things like B12 shots and mestinon.

If your brain hasn't exploded yet, I applaud you for getting through this. I hope it helps to bring you up to speed on where things stood before improvements, new tools, and new answers were found.

I'll try to break up my medical posts with fun stuff, fundraising stuff, and dog blogs! :)

Be a dancing light,

Emily

Monday Dog Blog: Going Blue for Mommy!

Hey, it's Gershwin here this week. 

Do you see these cool blue deely boppers I am wearing?

Well, I wore them to help Mommy celebrate her birthday, but I am also wearing them this month to support Mommy's efforts to raise awareness of Dysautonomia.

She's been working really hard to blog more about Dysautonomia and to do fundraising, and I want to do my best to support her.

Would you please consider supporting Mommy by making a donation to support Dr. Rowe?

Having our Mommy so much healthier than when we first met her three years ago makes us really, really, really happy. She can do so much more with us and we love it! 

So much of Mommy's health improvements are because of this amazing doctor, his exceptional clinical care and his research.

Please click HERE to help Mommy reach her fundraising goal.

Happy Monday!

Blessings and thanks,

Gershwin (and Tovah Rose)

Stories and Facts

Arboretum, October 11, 2015

·      CFS and related illnesses are growing at an alarming rate for reasons that are unclear.

CFS and dysautonomia are far from rare, despite the fact that so few people have heard of them and so few doctors are equipped to treat them. Very little time is dedicated to these illnesses in medical school. 

I have been alarmed at the number of people I know who have these illnesses. I could spend much of my days helping individuals navigate these illnesses. I now have two neighbors, a college classmate and a high school classmate with POTS. All of them have reached out to me for help as they navigate the early stages of illness. I have also been in contact with three local girls with POTS. It's disheartening to watch them go through the process and see how little has changed since my diagnosis in 1999.

I also have a wonderful group of friends that I met through DINET starting in 2002.

·      There is a significant mismatch between the number of people with these illnesses and the number of doctors to treat them.

For example, Dr. Rowe is unable to take any new patients and has been for several years. Many of my friends with CFS and/or dysautonomia find themselves unable to get adequate care because there simply aren't enough doctors willing to deal with such complicated illnesses that require years of monitoring, time-consuming care, no easy fixes or clear treatments, and lower pay than other specialties.

I am one of the very fortunate ones amongst my circle of friends with these illnesses. 

This is one reason why I am so passionate about raising money to fund Dr. Rowe and his efforts to educate the next generation on the clinical challenges of CFS and the research.  I cannot imagine a better teacher than him. The world needs so many more doctors like him.

·      Most people experience a long delay before finding a specialist.

I did not begin blogging until 2005, shortly after I found Dr. Rowe. While I had seen other specialists, none were able to provide me with the type of care that I needed. Even one of the other top dysautonomia specialists in the country misdiagnosed me with a genetic disorder and told me there was nothing that could be done for me. Previously the only two specialists I could find were one who treated me for CFS and the other for dysautonomia. The cardiologist who originally diagnosed the dysautonomia told me: "On a scale from A to Z, you are a Z. I have never treated someone who is a Z and I don't know what do to for you."

I have said many times that I saw almost 100 doctors before I found Dr. Rowe. These doctors were in every specialty imaginable because I didn't have someone to integrate all of my symptoms until I met Dr. Rowe. 

I waited SIX years to find a specialist.

Had I found a specialist more knowledgable in dysautonomia more quickly, I would likely have had a much greater chance at healing. Those who are diagnosed within the first 1-2 years and are able to start the appropriate treatments, such as midodrine, florinef and beta blockers experience a higher rate of recovery.

When intervention occurs early, the medications support the body in the ways that it needs until it can begin to heal itself. The longer the delay in receiving treatment, the more difficult it is for the body to heal.

I had access to care that most people do not--I had the physical and financial support to travel to the doctors I wanted to see and I had the scientific skill to navigate complicated medical articles to help me find a diagnosis. 

And it still took SIX years.

 Idon't want another group of young people, mostly women, to miss out on so much of their lives because we have limited treatment options and very few doctors.

Be a dancing light,

Emily

Factoid: Quality of Life

At The Arboretum

·      Patients with CFS and related illnesses test lower in health-related quality of life than do those with many other chronic illnesses (i.e. cystic fibrosis, diabetes, sickle cell disease).

--Johns Hopkins University--

Birthday Gratitude

"Made in 1975: Forty Years of Awesome"
The PERFECT Gift From My Friend Emily

The last week and a half has been a whirlwind of birthday blessings. I cannot imagine beginning a new decade feeling more loved than I have these past several days.

Until the dust settles, I catch my breath, I finish my fundraising and I wrap up Dysautonomia Awareness Month blogging, I fear my thank you texts, emails and notes will be a bit delayed.

I Wore My Crown Everywhere I Went Over My Birthday Weekend!

I want to take a moment to say here on my blog: THANK YOU from the very bottom of my heart for all of you who showered me with such love and support on my 40th birthday.

Thank you for the voicemails, the birthday serenades, the texts, the Facebook messages, the flowers, the snail mail cards (so many beautiful cards and notes), the meaningful gifts, and the tremendous show of support for my fundraiser celebrating my improved health and Dr. Rowe. 

My cup runneth over. 

It's Amazing How Few People Noticed It! Haha!

40 truly does feel fabulous, fantastic and magical. I never imagined the health I'm experiencing now, and I am continuously humbled and amazed by the support system and love that surrounds me.

Healing. Love. Peace. Joy.

I feel them all. 

Thank you to each of you for being a part of my life, for embracing my journey, for loving me, and for helping me to celebrate this milestone birthday. This life wouldn't be the beautiful life that it is without YOU in it. 

Blessings,

Emily

Goals: What I Want My Blog to Look Like

Stream at a Favorite Local Park

I've been mixing up the posts on my blog this month, trying to encompass a variety of topics and blog more frequently. 

I'd like to use Dysuatonomia Awareness Month and my birthday month in the following ways:

1. To continue working to raise money for Dr. Rowe/Dr. ANS. You can find the link to my fundraising page HERE. Thank you SO much to everyone who has donated so far. I'm overcome with gratitude at the success of the campaign so far and excited to watch the momentum continue.

2. To elaborate more on what is working for me treatment-wise, what new discoveries we have made over the past three years, and to share more about my team (headed by my point guard, Dr. Rowe).

3. To use Dysautonomia Awareness Month as a time to share some general, but powerful, facts about dysautonomia and related illnesses, especially Chronic Fatigue Syndrome. I'll also be sharing specific facts about the Chronic Fatigue Clinic/Dr. Rowe's Clinic at Hopkins, so that folks can have a better understanding of how his clinic works and why I am so passionate about helping his clinic in particular. I'll try to do this in short posts. Some of the information is new even to me.

4. To share some of the events of the past year that I've enjoyed with my new freedoms and health in celebration of healing, Dr. Rowe and life. I've often not blogged about big things because I was busy enjoying new experiences, but I'd like to share with many of you what's been keeping me busy!

I'd like to see the goals for this month trickle into the future as I try to make blogging and writing a greater priority. I need to write. As in, I need to write to survive. I've let my blog go in place of new adventures, but I'd like to balance things out a bit as we enter into the Fall and Winter months. 

Be a dancing light,

Emily

Monday Dog Blog: Deely Boppers To Celebrate Mommy

Kissing!

As far as we're concerned, Mommy's birthday celebrating has gone a step too far around here.

Hmmmm,What ARE These Things Mommy Put On You?!

Do you see what she made us do?! She made us wear these ridiculous deely boppers just like the girls at her party!

We Look Ridiculous, Right?

Mommy has had a wonderful week of celebrating and she's pretty worn out. But, boy oh boy, did she ever feel loved and spoiled and full of life!

We're happy to see her begin a new decade with so much more health, vitality and life in her.

In the spirit of our love for Mommy and her joy, we decided we'd wear these goofy things on our heads just for her. After all, she does give us really, really special treats, snuggles and all things good.

Happy Monday!

Blessings,

Tovah Rose and Gershwin

Another Year of Wynton!

With Carlos Henriquez

Here I am with Carlos Henriquez, the man Wynton Marsalis calls the future of jazz. At 36 years of age Mr. Henriquez is remarkable, and I had the privilege of meeting him in the lobby after the performance, getting his autograph, having a photo op, and having him teach me how to count 13/8 time. :) 

This is the third time in the past seven years that we have been able to see Jazz at Lincoln Center with Wynton Marsalis perform here locally. As I've said in previous years, it's a concert that always leaves one 'joyous and bouncing like a chicken.'

Mom and Me

On the way home from the concert, I blurted out to Mom and Kiernan:

I just sat up for a concert for over two hours, had energy afterwards to wait in line to get an autograph from Carlos, was able to fully enjoy the concert without pain, sweating, forceful heartbeats, the need to put my feet up or the urge to lie down. I was able to dress up, wear make-up, style my hair, put on jewelry and paint my nails in the afternoon before my nap. I could fully and completely enjoy the concert without thinking about my symptoms or worrying about being able to sit up.

Oh. The. Joy.

It humbles me.

Kiernan and Me

I love that two of Wynton's concerts have been timed right around my birthday--my 33rd and my 40th. What a change my life has made since that first concert outing.

My 33rd birthday was the year I met Miss Lisa Extraordinaire, who changed my life by showing me that she would make it possible, no matter what it took, for me to be able to see live music again. As much as I enjoyed that concert and as happy as I was to be there, every minute of it was a physical struggle. 

Me and Carlos!

For those of you who are just joining me on my journey her at Dancing Light's Studio, here are some links to earlier posts about what it took for me to be able to go to a concert, how much courage it took me to make it to the first concert, how Lisa changed my life, and how different it was for me to go to a concert.

My first concert outing in a decade, meeting Wynton, meeting Lisa and turning 33:

Part I: Birthday Surprises: Meeting Wynton Marsalis

Part II: Meeting Wynton

Part III: Dayeinu: More Me and Wynton

My second concert outing to see Wynton AND meeting him AGAIN!

Joyous and Bouncing Like a Chicken

A Little More Wynton

These posts are powerful reminders for me of my journey.

The Concert-Goers

Being able to sit up close, rather in the very back row where the handicapped seating is, made the concert more remarkable. I am so excited to see more performances sitting in 'regular' seats! I still get nervous before a bit outing like this in terms of hoping I will be having a 'good' day, and that the sitting up won't be a struggle. I have to be very careful in pacing myself before and after the concert.

Going to a concert is still not something I do in the same way a healthy person would, but I can do it!

Chatting with Carlos

I think that Lisa may have wanted to make it possible for me to meet Wynton again this time. Instead, I saw her get to take a very young boy back to meet Wynton. As I watched the little boy go back to meet Wynton, I smiled and hoped he'd have the same magical experience I did twice before. 

Sure, I'd love to have seen Wynton again. But you know what? It wasn't a big deal either way. I delighted in meeting Carlos, as I think his talent as a bass player is mesmerizing. He has been performing with the group since I first saw them in 2008 (when he was only 29!), and I can't wait to see the things he will continue to do with his life. Everyone in the orchestra is truly amazing.

I've had my turn. And I had my turn meeting Wynton when I really really really needed something special to happen in my life, when I needed to be reminded of the goodness and joys in the world. Lisa found a way to make my world brighter when I needed it most.

As I said in the first series of Wynton posts, I thought again last night about the word Dayeinu.  

Had I been able to sit up in real seats, it would have been enough.

Had I been able to sit up without pain or other ANS symptoms, it would have been enough.

Had I been able to wear my new dress, it would have been enough.

Had I been able to meet Carlos, it would have been enough.

The concert was more than enough. Meeting Carlos was icing on the cake. I did write a card to Wynton (with a photo of the two of us from my last visit) and gave it to Carlos, so hopefully Wynton got it!

The only sad part about last night was that I never got to HUG Miss Lisa! I only saw her from a distance and blew kisses to her. :( 

 Autographed Live in Cuba CD 

My autographed CDs are precious reminders of each step of this journey through illness.

I'm joyous and bouncing like a chicken over my newest concert experience and seeing Wynton and his orchestra again!

Be a dancing light,

Emily

Healing: Why Now? What's Working?

Dressed Up, Make-Up On, Hair Styled, Jewelry On, Nails Painted and Ready to Go OUT to Dinner to Celebrate Sarah's 40th. It's Hard to Believe This Is My Life!

To so many of us, myself included, my healing seems nothing short of miraculous. How did I go so many years with so many failed treatments and then see so much improvement so quickly in a couple of short years? This past year the improvement has surprised me so much because it has been completely linear in nature.

Our Mums

I thought the best person to ask for an answer to the questions we all have would be Dr. ANS.

I asked him the following:

If you were to answer the question: What is making me feel better? What made me get so much better? How would you answer it? I'm struggling with how to answer this (and of course, I get asked it a LOT!).

Our Mums

He answered as follows:

I would say it has to have been a variety of things: the prior Lyme therapy probably set the stage for later improvement, Ryan’s [PT] work on the TOS [Thoracic Outlet Syndrome] and other alignment issues has been instrumental, and the medication changes (with Mestinon at the top of that list), plus a great deal of your own insight and attitude to having a chronic illness (although I don’t want to suggest that having the right attitude is sufficient on its own). We also know that for some people, improvement comes naturally over time, although we don’t know what process in the body changes to make that happen.

Fall is Here!

I feel like I've found a really great combination of therapies (medications, PT, massage, acupuncture, at-home coping strategies, dietary changes, counseling, etc.). They all seem to be working together in great synergy, feeding off of one another and allowing healing to continue. It's also important to hold on to the fact that the previous years of trial and error were not wasted. I also keep healing as my number one priority. 

That's the scoop in a nutshell. Throughout the rest of Dysautonomia Awareness Month, I'll try to elaborate more on the specifics of these things and please feel free to ask me any questions you might have!

Be a dancing light,

Emily