A Little More Wynton...

Me and Mom

Because it is such a rare event for mom and me to be dressed up (especially at the same time), I wanted to share a few photos we took outside before the concert. Yes, it was March and I was wearing a sleeveless shirt! What a crazy Spring we are having!

Me and Barbara

Before I got sick I never went without make-up, doing something with my hair, and generally kept myself always looking 'put together'. I have always loved getting dressed up--especially wearing skirts and dresses. It's difficult to explain how much I miss being able to put on make-up, do my hair, and wear cute dresses and skirts on a daily basis. 

I do my best each day to get dressed in a coordinating outfit (even if it's PJs!), put on a dabble of blush, and spritz my hair with a little water and product. Just doing this each day is a huge use of energy, yet I continue to choose to do it. Some days, like today, I was just too tired and weak to do any of those things.

Clothes, fashion, make-up and jewelry are emotional and an expression of ourselves. The limits placed on my ability to dress in skirts (because I can't sit in a skirt and cross my legs Indian style) or sit up long enough to put on make-up seem like little things in the grand scheme of things. But I miss feeling the feeling of choice, I miss shopping for and picking out my own clothes, I hate that trying on clothes exhausts me, and I miss feeling pretty. 

Barbara and Mom: It is SO difficult to get a photo of these two both smiling, eyes open and not talking at the same time!

As I was talking to my best friend a bit about the concert last week, she said that, while she she felt so happy that I had a good experience she also felt sad. I asked her why she felt sad. She said when I told her what it took to rest before the concert, set out my clothes and make-up the day before, pace myself throughout the day in order to get dressed and put on make-up and still make it to the concert, and then the crash I had afterwards, it made her sad--sad that I couldn't just go to a concert without so much effort and planning. 

The Three of Us!

Before the concert I had an okay-ish day when my step-sister was working at AT Loft. I had never been there before, but I am now in love. :) The store is small, the selection is very 'Emily', the dressing room in HUGE with a big bench to sit on, and the service is amazing. My step-sister asked me exactly what I was looking for, where I carried my weight (so she could choose a style of pants for me), and what colors I liked. Within 35 minutes I had found pants that fit and three tops! I only had to try on three pairs of pants (which is the most difficult thing for me to do physically). 

Typically my Mom either goes shopping for me, I order a bunch of stuff online and exhaust myself trying on new clothes, or I try to go to a department store like Penny's with Mom and pick stuff out with her. Mom does a great job shopping for me, but it's just one more thing for her to do. A lot of times, I'm just wearing clothes that fit, not ones I particularly like.

Going to Loft, having my step-sister work so hard to find clothes to fit me, and coming home with clothes that made me feel pretty and FIT (after some weight gain), really lifted my spirits. I was SO excited to wear my new clothes and jewelry for this concert.

Me and Mom

So, I wanted to share the photos of our very special night out. Because it took a lot of help from so many people to get me there. I so love these photos of the three of us, I loved wearing my new clothes, and I loved the concert. 

Blessings,

Emily

Joyous and Bouncing Like a Chicken

Me and Wynton

Last week, Mom, Barbara and I were able to see the Lincoln Center Jazz Orchestra perform again. AND I got to meet Wynton Marsalis AGAIN! 

Me and Lisa! :)

Of course, the wonderful Lisa orchestrated the entire meeting. Just before the encore, one of her employees whisked me out of the auditorium and wheeled me to the backstage area where Mom and I waited for Wynton. While we were waiting to meet him, we were able to chat with and meet many members of the orchestra. So cool! We also got to talk to the director of the performing arts center who does such a wonderful job bringing artists to our area.

Before the concert, Lisa had intimated that I might get to meet Wynton again, so this time I was prepared with 1. a CD for him to autograph, 2. a new outfit (thanks to my stepsister!) 3. my camera, and 4. topics of conversation (which I had been working VERY hard on!!)

Wynton reading my card to him.

I was also prepared with a card for Wynton--with a photo of the two of us from our last meeting and a note. I expected him to take the note from me, hold onto it, chat for a minute, and move on. Instead, he stood quietly for a few minutes while he read the note. In it, I thanked him for being the impetus in 2008 for my going to live concert outings again, after 10 years away. In October 2008, when we went to see Wynton for my 33rd birthday, I had not tried to go to a concert since I had gotten sick. But, when I heard he was coming to perform here, I knew I HAD to go. I thanked him for sharing his gift and his passion with the world.

Putting his hand to his heart, the soft-spoken Wynton thanked me for my note, telling me how much it touched him. 

Otherwise, we chatted a bit about the concert, his appearance on the Mr. Rogers show in the 80's (I told him he is a much better dresser now!), women in jazz, and the democratic rhythm section (which he suggested we send to Washington to teach Congress how to work together. This comment had the crowd cheering.) Other than my mom and a couple of staff members, I had Wynton all to myself. :) A large crowd of people was waiting outside of the backstage area to meet him.

I can never exactly figure out how Lisa manages to set up such an amazing and special event for me, why she spoils me so much, or why I am so incredibly blessed by her. I feel a bit undeserving of so much special treatment. Just going to a concert, seeing Lisa, and being treated with so much kindness and respect by the entire staff is certainly enough. More than enough. The added extra of getting to meet the musicians, especially people like Wynton and Joshua Bell, is beyond humbling. When people tell me that I am strong, I want to say: I am not stronger than anyone else, but I am strengthened by those who lift me up. 

Getting some sugar from Wynton!

When I met Wynton in 2008, he kept asking me to give him some sugar. Even after living in the South for four years, I had no idea what this meant! This time, I had done my research and was prepared to give Mr. Wynton some sugar. :) So, we both got some sugar from each other--big kisses on the cheek. 

His note on my CD. (I love this CD.) I think I melted when I saw what he wrote!

In Wynton's Swing Symphony he makes very specific notes as to how each movement should sound. One of the movements, he noted, should sound "joyous and bouncing like a chicken". I can't think of a better way to describe how watching the Lincoln Center Jazz Orchestra makes me feel. They are so joyful and spirited and talented. Each member is so talented individually that, as a group, the music they make is remarkable. Wynton had composed many of the pieces they played this time, including a version of Itsy Bitsy Spider and a song he called The Caboose. :)

Program Cover.

As always I rested for the days leading up to the outing and for the next few days after the outing. I had been feeling discouraged as to how hard such outings had become and began wondering if this might be my last attempt to go to a concert. I'd certainly have a phenomenal memory to go out on, right? Because no matter how much Lisa and her staff do for me, they can't make my body cooperate!

However, this outing turned out to be the smoothest of the outings we have had so far. I rested better before and after than I usually do and felt better during the concert than I usually do. And with the help of a lot of meds, I managed my symptoms better before and after. I just had to try to hold on to some self-compassion the first three days after the concert when I was too tired to do anything.

Before the Concert on an Unseasonably Warm Evening: Barbara, Me, Mom

I am sure when the brochure arrives for next season's performances I will find at least one concert that is absolutely irresistible! (There are always so many phenomenal ones to choose from.) Plus, it's hard to resist a visit to see Lisa and her entire staff of such poised and kind young students. She has trained these young men and women so well. They do not blink an eye at wheeling me about, carrying the reclining chair to our car, making sure we are comfortable, and generally being kind.

As we left the auditorium, Lisa and her entire staff waved and said: "Goodnight Emily and Emily's mom and Emily's friend!" I don't think I stopped smiling from the moment we arrived until, well, I'm still smiling about the entire outing. It was worth every ounce of energy. I'm still joyous and bouncing like a chicken. :)

Blessings,

Emily

Long Overdue Time with R, K and Q

Hey, I'm watching Thomas The Train! No photo shoots, please.

As always, I'm playing catch-up when it comes to blogging. Here's one of February's highlights: a long overdue visit with Rebekah and the boys. As hard as we try to see each other regularly, we hadn't been able to coordinate a visit since September.

Kale being bashful.

Kale celebrated the occasion of my visit by pooping in the potty for the first time. I am sure all mommy's can appreciate the significance of this moment. I just enjoyed giving him extra M & M's when Rebekah was otherwise occupied with Quinn. 

Quinn. :)

In September, Quinn had just started learning how to sit up. Now he is Mr. Smiley an ready to take off walking!

Rebekah and Mr. Smiley

I so cherish my visits with Rebekah and her boys. We had so much to catching up to do! Hopefully we won't have to go six months before our next visit! 


Thank you for the visit, friend.


Blessings,


Emily

Without Me?

"Either you're taking me too, or you're not going anywhere!"

Since he doesn't like to be separated from his 'herd', Asher usually spends all of his moments during dinner time hanging out with me and Mom. During dinner Saturday night, Mom noticed he wasn't with us and said: "Where's Asher?" 

We were all packed and ready for our trip to see Dr. Complex and Dr. ANS the following day. As you can see, we found Asher surrounded by our suitcases. We're not sure if he was asking us to pack him also or if he was just letting us know how sad he was we would be leaving. He forgets how good he has it at Dad and Abbie's house when we are away!

"You're not leaving without me, are you?"

As many of you know, I scheduled back to back appointments with Dr. Complex and Dr. ANS for the end of this month. On Monday we will have see Dr. Complex at 10:00. On Tuesday we will drive about an hour or so to see Dr. ANS at noon for a two hour appointment and then head home. Needless to say it will be a long three days, and I will have been awake long before my usual time each morning. Dr. ANS usually does a lot in his examination to provoke symptoms, which can lead to a bit of a flare, so we will see how that goes!

When this arrives in your inbox (or you see it on Facebook), we are hopefully home safe, back with Asher, and resting. I'll blog about it all as soon as I can.

Blessings,

Emily

Reunited

With my Favorite PCP in 2007

My Valentine's Day was a good one, not because of romance and love (although I felt very loved), but because I was reunited with my favorite PCP and am now a patient of his again. Having him back on my team is a huge relief and great comfort to me. 

I did not start blogging until 2005, so many of my early challenges to find doctors who would validate, or even care for me, have not been shared on this blog. Needless to say, it is awful to be terribly sick and know that something is terribly wrong, yet be unable to find a doctor to pay attention. 

By 2002, I had seen many, many doctors including a LOT of primary care physicians and internists. Even with the diagnoses of a POTS and NMH from a positive tilt table test as well as Chronic Fatigue Syndrome, I was facing illnesses that were so little known and so dismissed in medicine at that time (and still are). If you asked many of those early doctors about my situation, it was all in my head, of course.

In my last appointment with a PCP before meeting Dr. Listener, I was told "I will treat you for any other problems that come up such as a cold or the flu, but I will not be involved in treating you for or trying to help solve your other medical issues." Gulp. I remember leaving the appointment, sobbing in the car, feeling as if yet another doctor had thrown me out into the street. Why wouldn't anyone help me?

My dad had been seeing Dr. Listener, and he agreed to see me as a patient. I ended up in his office for an emergency appointment, incredibly sick from a medication that one of my POTS specialists had put me on. 

For the next five years, Dr. Listener cared for me with humility, grace, compassion, and empathy. He believes that if a doctor simply listens to a patient, much of the time he can figure out what is wrong. I cannot tell you how many times Dr. Listener put together the pieces of the puzzle just by listening. This is why my PCP will be called Dr. Listener from now on. His gift is in listening. His gift is in knowing when to say: "I don't know what to do." His gift is in saying: "I will pray for you. I'm sorry you are going through this." His gift is in being willing to trust me, the patient, and what I say about and do with my body. His gift is in having the willingness and humility to be part of a team. His gift is in problem solving. His gift is in validating and never minimizing.

So, when he announced in 2007 that he was leaving our local practice to move to a different location 45 minutes away we decided, through my tears, that I needed to have a local doctor in case I was hospitalized. I agreed and switched to another well-respected member of his practice and stayed with her for four years until she left last Fall. I never clicked with the new doctor the way I had with Dr. Listener, but I had few options to switch. One of the most important roles of a PCP locally is to work with Medical Assistance to get my prescriptions covered and refilled. This process continuously broke down with the new PCP as did communication with my specialists.

Because there are only a couple of major practices in town, and I wanted to stay within the system I am in (all of my specialists are there), I could quickly be accused of Doctor Shopping. I would also be in a bind if the new doctor I saw was worse than the one I had been seeing!

When Dr. PCP left last Fall, she and I agreed that I would be best off with an internist instead of a family medicine practitioner. Again, I started the search for a new PCP. Again, I found myself facing the same patterns I had when I first got sick. Both internists I saw dismissed me, did not listen, did not show respect for or interest in the treatments and doctors I had seen and was seeing. One said he had been taught not to believe in Lyme so he had to stick with that, and the second, while looking at her computer the entire time, said I must have been 'having some vertigo or something' if I had a positive tilt table test. I wanted to scream: I am LYING down on the table here because it is so hard for me to sit up! 

This post isn't about going into the details of those appointments and what made them so bad, but it was disheartening to find that much of the treatment of patients with mysterious and complex chronic illness has changed little since I first got sick.

I had tried several times to return to Dr. Listener, but because of my insurance his office was not accepting any new patients. All of this time, my dad had continued to see Dr. Listener, making the drive regularly to keep him as his PCP. Finally, Dad told Dr. Listener that what I really wanted was to be his patient again. Since our hospital now uses hospitalists, it is no longer relevant that I have a doctor who has rounds here.

Because he made an exception to see me as a patient the office was willing to go through the hoops necessary to accept another Medical Assistance patient. So, on Valentine's Day, I was reunited with Dr. Listener. In our first appointment he helped me with things that my other PCP had been dismissing! 

It took five years, many tears, and a lot of persistence to find my way back to Dr. Listener. Finding a PCP who will work with patients like me is a rare and wonderful gift. I'm humbled, grateful and relieved to have Dr. Listener back on my team.

Blessings,

Emily

Two Girls with Crazy Bodies

Me and Ellen. 

Two girls with crazy bodies.

Two years of texting and Facebooking about crazy bodies.

Two hours together face-to-face, finally made possible with cooperation of crazy bodies.

Ellen wrote that great summary of our visit a couple of weeks ago. Somehow, while clicking around on FB two years ago she discovered my blog and since then she's left many wise and insightful comments, inspired me with her creativity as a metal worker (I wear her jewelry almost every day), and we've done lots of texting. Despite the fact that we live less than ten minutes apart it took us this long to coordinate a visit! I'm so glad we finally met in person and talked face to face. We may not get to have the face to face interaction often, but it was really special to finally meet the person I'd been texting with and who had been such a wonderful supporter of my journey. 

I've met so many amazing young women making the most of life with chronic illness. People like Ellen inspire me to create meaning in my life in spite of my illness.

Blessings,

Emily

Transformation

Butterfly on our Zinneas Last Fall

We delight in the beauty of the butterfly but rarely admit the changes it has gone through to to achieve that beauty. 

--Maya Angelou--

When I ventured out for a new kind of massage last week, I discovered a lovely plaque with this Maya Angelou quote. I spent the entire month of January in my cocoon. If it wasn't for several necessary medical and therapy appointments I would still be in my cocoon! I spent as many moments as I could in my den, in my recliner, nestled underneath my heated blanket, listening to music and engaging in quiet activities such as knitting. 

I found myself craving quiet time alone (which most of you know is the opposite of my usual self!) in which to pour all of my energy towards transformation. Giving myself the 'space' to process, discern, take care of myself, create, listen to music, and be quiet is something I have not done since very early on in my illness. In these times of quiet, the greatest and most beautiful changes are happening for me.

I feel a lot like a butterfly who still needs more time to grow in her cocoon. I've found that learning to live my life entirely differently and implement those changes to be all-consuming, hard work. Yet it is also liberating and rewarding. Jeannine has been teasing me that I am moving at mach speed because I am changing so fast and calling me "Mach" for short. :) 

As January ended and February arrived, I found myself laughing more and delighting in more simple joys. I've made a concerted effort to seek out joy, and for the first time in a long time I've felt myself laugh more readily and feel more joy, even in the midst of the sadness, grief and anxiety that have gone along with this change. 

To be honest, in some ways, I can't wait for the 'medical stuff' of February to be over, so that I can crawl back into my cocoon and continue on my transformation.

Blessings,

Emily