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 

13 1/2 Years Later: What IS this?

Kwanzan Cherry Tree in our Yard.

As I recline here, listening to WDAV Davidson I feel anxious about writing an authentic post. Looking back at last year's posts, I see that I have not written an honest update since my What's In A Day post at the end of September. Today, as my hands rest on the keyboard, I'm hoping for the courage and energy to write about what has been going on medically, something I've blogged very little about over the past year. Last time I wrote in June we were Waiting for a Breakthrough. And we still are. I will do my best to relay what has transpired medically over the past few months.

All photos from early Spring 2011.

After our trip to Chincoteague (which I still haven't written about), we stopped to see Dr. Complex on our way home. The appointment marked one year since I started working with him. We continue to find ourselves in a state of 'an enormous status quo' as he would say and using the 'laws of the shotgun'. Dr. Complex says: "If I could find the source of the fire, I would be able to put it out instead of putting out all of these little fires."


We had an honest discussion about where I am six years after beginning treatment for Lyme disease and one year after working with him. I've never been a 'slam dunk' for Lyme disease. While I have some indicators of Lyme or some sort of infection, I also have markers that point to other, unknown, causes. For example, I have an elevated C-Reactive protein, which is not typical of Lyme OR non-specific CFS. I also have a strong positive for a rare Herpes virus (HHV-6) that has been found in many people with CFS and Lyme.  At this point treatment with anti-virals, while still used as a protocol by some, hasn't proven to be as promising as originally hoped. Over the past year we've seen some metabolic changes (getting my Vitamin D levels healthy) but nothing that has been reflected clinically.

What we know is that over the past six years my response to Lyme treatment has been limited.


Dr. Complex still believes strongly that my illness is vector-borne and infectious in nature, but we cannot identify the infectious agent. We agreed, though, to stop all of the antibiotics for a while to see how I do off of them. We need to see if they are of any value at this point. I am still doing other treatments to target inflammation, adrenal fatigue, sleep, etc. He continues to treat me based on the premise that, regardless of the cause, finding ways to improve my quality of life are important.

We agreed that the next best step would be for me contact Dr. ANS and ask him the following questions:

1. What if we stepped back from treating this as Lyme disease? What if, instead, we treated it strictly as ANS Dysfunction and CFS?

2. What other treatments might we try?

3. Would it be possible to see Dr. ANS in his clinic again (something I have not done since 2004, as we have communicated via email and phone since then--pages and pages and pages of emails!) For those of you reading this, it may seem odd that I have not seen Dr. ANS since 2004, but I am in constant contact with him and he is still my point guard on everything--from writing letters to other doctors and to the insurance company to keeping up with what is going on with all of my other doctors to emailing extensively with me re: any questions I may have.

Dr. ANS responded to my email with the following:

I doubt the answer will be found in trying to stabilize the ANS differently. In many ways, you are on a full-court press with the ANS anyway, and I suspect it will settle down only when we find something to more effectively treat the underlying cause of the problems.

He also graciously agreed to see me in clinic to see if anything popped out in the examination and discussion. In a little more than six weeks, we will be making a big trip to see both Dr. Complex and Dr. ANS in back to back appointments.

These conversations between Dr. ANS and Dr. Complex transpired between the end of October and the end of December. They have been intense and time-consuming, and much of them took place over the winter holidays. While I was trying to keep it together for the holidays, I was having these conversations with my doctors feeling completely overwhelmed.

I have always challenged and questioned my diagnoses from the beginning of getting sick, and I continued to do that throughout the past six years of my Lyme diagnosis. I haven't been a passive bystander in this process.

How can we be 13 1/2 years into me being sick and still not know what is really wrong? What does this mean for moving forward? Did I put myself through all of those Lyme treatments for nothing?

Dr. ANS and Dr. Complex are the two of the most engaged, responsive, smart, intuitive doctors I have met on my journey thus far. I've started to come out of my state of being completely shell-shocked by our collective lack of clues as to what is going on and where to go from here. Right now, I'm trying to put my fears and my questions in a little box where they will stay, contained, until I see both doctors in several weeks.

We certainly all felt that, as a team, we would be able to make progress this year. It's difficult to end yet another year with so many unknowns and a continued status quo in my health. I wrestle a great deal with how much energy I want to put into pursuing more treatments and options vs. an acceptance of what is (as people such as Laura Hillenbrand and Toni Bernard have done).

What is enough? How much is enough to try? In my years since getting sick I have tried over 100 medications or supplements, seen over 50 doctors, been through hundreds of tests, tried many other treatments such as diet, exercise, therapy and bodywork, and have a medical record over 1000 pages thick. I continue daily and weekly to use a combination of these tools. 

I will have to wait until my two appointments to see how Dr. ANS and Dr. Complex feel about what to do moving forward. I am not sure how to reconcile the differing points of view that either 1. we do not know the cause at all, or 2. it is infectious in nature, but we do not know what type of infection. I am sure we will hash this out extensively at my two appointments.

I am always baffled by the fact that we have these multi-system illnesses that leave people like me very, very sick and we are unable to identify what is making us so sick. 


So, if it seems I've fallen silent lately, I have. With no change on the health front, I'm a bit tired of sounding like a broken record. But I realize by not sharing what has been going on, I've left my friends and family in the dark as to what kind of treatments I have been trying (even if they haven't worked) and why we are making the decisions we are making. These medical conversations came in the midst of my grappling with several other difficult changes, transitions and questions.


At first I felt shell-shocked by the conversations I had with Dr. ANS and Dr. Complex over the past couple of months. I still keep replaying phrases like "an enormous status quo" and "laws of the shotgun" and "until we know a cause". I also keep thinking: "Thirteen and a half years and we are still up in the air?!" Being 'up in the air' is not my forte.


At this point, my job is to recognize that I have placed myself in the hands of two of the most capable, skilled, compassionate, passionate, dedicated, intuitive and creative doctors available to treat patients like me. While I need to continue to be my own best advocate, I also must recognize that the biggest part of my job was in finding these doctors. I know that they will both doggedly pursue answers and ways to help me. This makes me, in so many ways, one of the most fortunate of people with an illness like this. Still, it's not a fun place to be all of these years later.


Blessings,


Emily

Hello 2012!

Salad with Pears and Walnuts

We tried our darnedest to say goodbye to 2011 in style. Mom made lobster tail (!!), salad, asparagus, fingerling potatoes, and chocolate covered strawberries for us (Jeannine included, of course). Unfortunately, I was so incredibly sick from a new medication I struggled to make it through dinner at all. 

Lobster Tail, Asparagus, Fingerling Potatoes

I'm honestly relieved to say goodbye to 2011. When I wrote our holiday letter reflecting back on the year, I thought: "Whew. It's no wonder I feel exhausted! What a year!" The sicker I get, I also find the holidays to be overwhelmingly stressful and exhausting.  I've greatly enjoyed the quiet and solitude of the first week of January.

Chocolate Covered Strawberries

For the past couple of months I've been posting blogs of the 'good stuff': an outing, a meal, a concert, a smiling face. I haven't 'kept it real' at all. In part, my energy level is making it increasingly difficult to blog on top of the outings, so I've chosen the latter. 


What's really going on is that I feel as if the Earth has shifted beneath me and I am trying to figure out how to move where it has moved. For me, 2012 seems to be about figuring out how to move to that new place with some sort of acceptance, grace, and peace.


In 2012, I want to continue to post about the good stuff because I am always trying to eek out as many moments of joy as possible. At the same time, I want to 'keep it real' and get back to blogging. As I do in my own life, I will try in my writing to balance the co-existence of the grief and gratitude that life brings daily.


May you 2012 be a blessed one,


Emily