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

Meeting Katherine and Giuliana!

Me (wearing my "Will Work For Food" shirt from Katherine), Katherine, and Giuliana

I realize the first month of 2012 is quickly coming to a close, but I'm still determined to share a few things about 2011 that got missed in my blogging.

First up: my visit with Katherine and Giuliana! 

Katherine and I met through the DINET forum about 8 years ago. In DINET's early years, the forum was small and intimate, and I became friends with several of the women. While I no longer am active in the forum, I've kept in close touch with Katherine and a few other women. I cannot stress enough how the women I have met through DINET have profoundly impacted my life for the better. 

Outside of the forum, Katherine and I began emailing frequently discovering we had a lot more in common than just ANS dysfunction. We've shared so much of our lives over the past few years. Katherine has been a major source of wisdom, patience, understanding, compassion and empathy, as well as someone I love to talk to about lots of other topics.

So, after 8 years of being in touch only through cyberspace we finally met in person! Both of us struggled early on with the idea of cyber-friendships. Were they real? Would the person be what I expected? What would it be like in person?

Katherine lives close enough to Chincoteague that she was able to come with her daughter, Giuliana (9), to visit us during our vacation. They came for dinner and an overnight. 

Katherine and Giuliana were just as I had imagined they would be! It was so exciting to finally hug in person and it did not feel at all like we had never 'met' before. 

The hardest part was that our visit was planned the day after Mom and I had arrived in Chincoteague, so I was feeling pretty horrible. I just wish that we had had more time together to talk face to face. 

What a gift to finally meet in person! And to know that our friendship is 'real'. :) Thank you so much Katherine and Giuliana for making the drive to visit us and finally meet!

Blessings,

Emily

Paradigm Shift

All Photos: 36 Year Old Weeping Cherry Tree in our Front Yard; Fall 2011

I have spent the majority of my time since becoming sick suspended in waiting. I have framed my world around the phrase: "When I get better...". I have continued to operate as if I am not sick, pushing myself to such limits that led me to completely burn out, both physically and emotionally.

Living this way brought me to a place of extreme emotional debt with constant feelings of guilt, feeling overwhelmed, and never, ever feeling like 'enough'. I reached a point of emotional exhaustion that I had never known before. 

In the past few months I have found myself in the midst of a major paradigm shift. 

My focus now is on adapting to and being accepting of my limits. Rather than viewing this as hopeless, I find it more hopeful than waiting for something that may or may not come. In some ways, as the famous Buddhist monk Thich Nhat Hanh, hope can take us out of the present moment, diverting our attention to the future.

What I realized is that if I am to survive this illness, I need to make major changes in how I operate. 

I believe that even if I remain this sick (or get better or get sicker), I can find ways to live well with illness. I want to find ways to live each day with what I've been given, not focusing on what I think I 'should' be doing or on what I cannot do. 

I'm now immersed in finding ways to live well with illness and live a meaningful life while honoring and respecting my limitations. While I have always focused on living a meaningful life, I haven't done it within the realistic constraints of my illness, which is what led to my feeling so completely overwhelmed day in and day out. By the time I finally found a therapist who 'got it', I was saying: "I know there is a better way to do this. I know there is a way out. I know there is a way to be sick and still live well. I just need help getting there."

Letting go, learning new ways of being, surrendering, accepting, learning to feel like I am 'enough' may just be the hardest work I've done yet! I'm truly looking forward to creating the best life I possibly can with whatever my health may bring.

Blessings,

Emily

Braver

Things Shall Never Die

The pure, the bright,the beautiful,
That stirred our hearts in youth,
The impulses to wordless prayer,
The dreams of love and truth;
The longing after something's lost,
The spirit's yearning cry,
The striving after better hopes-
These things can never die.

The timid hand stretched forth to aid
A brother in his need,
A kindly word in grief's dark hour
That proves a friend indeed ;
The plea for mercy softly breathed,
When justice threatens nigh,
The sorrow of a contrite heart-
These things shall never die.

Let nothing pass for every hand
Must find some work to do ;
Lose not a chance to waken love-
Be firm,and just ,and true;
So shall a light that cannot fade
Beam on thee from on high.
And angel voices say to thee—-
These things shall never die.

Lyrics by Charles Dickens,
Music by Lee Dengler

Me and Hunter at his conducting debut.

For the first time since my own performances at my high school, I went back last week to see a concert. Hunter, who is part of several choral groups and is now a senior (*gulp*), made his choral conducting debut to the gorgeous piece Things Shall Never Die. I felt like a proud big sister watching him! I also learned that everything at the high school looks exactly. the. same. Just older and more worn. And they serve the same red punch after the concert as they always did when I was in school. 

Besides weighing the benefits of going on an outing with the physical consequences I will pay afterwards, one of my biggest 'blocks' when it comes to going out is my need for the big reclining chair. Using the wheelchair has become increasingly easier and freeing, but I'm not quite there yet with the reclining chair. I hate making a scene or standing out or looking funny.

But, I really, really, really wanted to see Hunter sing and conduct.

Me, Miss Alexandra and her new rainbow rubber bands on her braces. :)

In advance of the concert, Scott contacted the choral director regarding my needs. My follow-up email received a warm reception from the director, an eagerness to accommodate my needs and a warm welcome back to the school for a concert. Hunter, Scott and the choral director arranged everything in advance, including bringing my reclining chair to the auditorium and setting it up.

When Mom and I arrived at the high school, Hunter immediately met us at the entrance all dressed in his tux (isn't he handsome? :)). Hunter said: "Let me show you to your seats!" and graciously led us to our special spot, where we were also immediately met by the choral director who made sure we were comfortable and could see well and said: "We're so glad to have you back!"

Now, I did not attend a small high school. The school is over 2000 students large. And when I would have expected the performers and director to be back in the practice room warming up, they were instead in the auditorium hanging out. And took the time to welcome us.

The crew: Mom, Scott, Hunter, Anne, Alexandra, Me.

Scott, Anne, Hunter and Alexandra (I will call them The T Family) have been instrumental in my increasing acceptance of my disability. They absolutely do not care that I am different. They just show joy in being able to spend time with me or see me. When Hunter greeted me at the concert, Alexandra came over excitedly to hug me, and Scott and Anne came over to chat, all I could think was: Was I that brave as a self-conscious teenager? Was I as accepting as Hunter and Alexandra? Would I be as comfortable and accommodating as Scott and Anne had I not become sick? 

When I first met them in 2005, I was at my absolute sickest. Because we are neighbors and The T Family is always willing to help out with things, they've come to our house and seen me looking and feeling horrible. Anne has sat by my bed while I've been bedridden and receiving IV fluids. Alexandra has cuddled with me. Scott has visited me in the ER. Hunter has always come over for a Halloween visit. After my port surgery, I desperately wanted to leave the four walls of our house and went over to their house in my PJs.

In general, I'm a great actress, and very few people ever see how I'm really feeling. Most people never see what I look like on my worst days. It is a rare and humbling gift to find people who are so immediately accepting and comfortable with illness and disability. 

The T Family, and all of the others who have encouraged me to go out no matter what it takes, have made me braver. While I was anxious about attending the concert, it was hard to find much room for anxiety when I was surrounded by so much support, assistance, and acceptance. It was also great to be welcomed back so warmly to my alma mater, which I love dearly and have many wonderful memories of my time in the music program. 

Going to this concert made me realize that instead of focusing on the idea that I might be 'making a scene' or 'causing a hassle', I need to change my focus. Instead of being worried that the high school students might find my situation awkward, I need to remind myself that by being brave enough to go to the concert shows them that it's better to be out in the world than to stay home and miss out. 

I first used my reclining chair to see Wynton Marsalis in concert. And if you are a regular reader of my blog, you know that was a huge whopping amazing success, thanks to Lisa! For some reason

going back to my high school required some extra courage.

I've been so incredibly fortunate to have people like Lisa (who helps with the big fancy concerts I've been to) and The T Family whose number one priority is that I get to enjoy the arts and an outing. They also take great joy in my success. 

I really hope to make it to some more of Hunter's concerts before he graduates this Spring, as well as to some of Miss A's concerts (she is quite the artist herself!). The price for an outing is a big one--I didn't sleep the night after Hunter's concert and was really wiped for the next couple of days--but I am braver for it.

Bravo to Hunter for his fantastic performance and thank you to The T Family for your lessons in acceptance.

Blessings,

Emily