Mom Goes to Arizona!!!

Stan and Sandie's place in Arizona.

Mom just got back from a five day trip to Arizona to visit her brother and his partner, Sandie! Of course, two of those days were mostly air travel. And, Uncle spent one day in the ER (he is okay, phew!). Mom had never been to Arizona before. 

Stan and Sandie at dinner during Mom's first night there.

Uncle Stan and Sandie flee the cold Chicago winter for a while each year, so Mom went to visit them in Arizona this year. Uncle said he would take very good care of her! When she arrived the first night he made a roast chicken, mashed potatoes, and green beans since her stomach has been bothering her so much.

Mom and Uncle during dinner the first night.

Before Mom left for the trip I said: Make sure to take photos of Stan and Sandie and of YOU with your brother. Yet, this is the only photo of the two of them she came home with! :P

The backyard. It is so weird not to see any grass!

Mom really, really, really needed this vacation and I am so proud of her for going. The sunshine, change of scenery, and break from caregiving were much needed. I really don't think she has hardly taken a break in the entire 12 years I have been sick. I hope she will take a vacation more regularly now! I don't think she was quite ready to come home.

The neighborhood.

She didn't miss any nice weather here, that is for sure. She loved the SUN and RELAXATION! 

Mom's little casita!

She even had her own little casita! She spent her time here devouring The Help.

The patio.

Is that sun? They spent lots of time hanging out on the porch and going to water aerobics in the outdoor pool. Look how hip Stan and Sandie are with their Smartphones! :)

To manage while Mom was away, we hired a caregiver as well as a petsitter. Amy, our petsitter, came in the mornings to let Asher out, walk him, and feed him. Peg, my caregiver, came in the evenings to prepare dinner, do dishes, help with Asher, do laundry, help with bathing, etc. 

Everything went really smoothly here and I loved spending time with and talking to Peg. She was really able to just figure out what needed to be done and do it.

Still, there were quite a few things that I needed to do on a daily basis that Mom usually takes care. Often they were very little things like getting the paper, feeding Asher snacks, turning the heat up and down, picking up a few things around the house, but I found myself pretty low on spoons by the fourth day of the trip! By Saturday night, when Mom came home, I was ready to be back to our 'regular routine'.  I also had a lot of appointments on top of her being away.

At first I felt a bit frustrated that 'all I was doing for 5 days was taking care of myself' and I wasn't able to get anything else done. But, then I realized that I was doing what was most important in the world, and that was to give Mom the gift of a BREAK. That helped me to have perspective for the rest of the week. Making it possible for Mom to go away was most important, and now that we have done it successfully, I hope she will feel that she can leave for a trip again! Of course, I totally crashed when she got home. :P

Stan and Sandie on the trolley in Scottsdale.

Thank you Stan and Sandie for having Mom for a visit and taking such very good care of her! Please drink some coconut water and Gatorade, Uncle! None of these ER shenanigans again. :) Enjoy the rest of your time in the SUN! :)


Blessings,


Emily

And a Happy Valentine's Day from Asher too...

Asher was at the groomer all day on Valentine's Day. But he arrived home looking so dashing with his Valentine's day bow and new haircut, that he asked he if he could wish everyone a Happy Belated Valentine's Day. 

Happy Valentine's Day from our little Valentine!


Blessings,


Emily

Happy Valentine's Day!

Happy Valentine's Day!

These photos may look a bit familiar to many of you, but I thought they'd be fun to post for Valentine's Day since I couldn't mail our holiday/New Year's card to everyone I wanted to! 

Plus I'm wearing these pajamas today anyways! And they are PINK! :) (Yes, there are still a lot of Pajama Days around here.)

Today seems like the perfect day to say THANK YOU to all of YOU who bring so much LOVE into my life! 

I am very, very, very blessed. 

May you be surrounded by LOVE today. Even though most of you are far away, I feel your love today and every day. And I hope you feel mine for you.

Blessings,

Emily

Becoming My Illness

Fall Mums in our yard. (Sorry the scenery around here isn't so hot right now!). Everyone on the East Coast is getting snow, except it seems, for the little pocked where we live! Boo!

I've fought desperately to maintain being a person with a disability. Not the disability. During the year of the Rocephin, I felt that I became my illness. Getting through treatment became so all-consuming and feeling sick 24/7 left little room for anything other than an illness-focused world.

Before the year of the Rocephin, I still felt that I had some balance. I was sick, but I wasn't my illness. Now, after the year of the Rocephin, I'm picking up the pieces and trying to create a new and different life. I'm re-evaluating everything. Who am I other than illness? What gives me meaning?

My life became illness and 'everyone else's lives'. It was easier to say: how are YOU? What's new with YOU? than to say how crappy things really were in my world. At dinner, I found myself having nothing to say except how crappy I felt or what was going on in other people's lives. I learned what was important to every one else, but I forgot to keep or find what was important to me. In a way, I made myself invisible, by quietly sitting in pain. But who wants to rain on other people's joy? Not me. I used other people's lives (Facebook can allow one to do this for hours!) as an escape from my own pain. And really, how many ways are there to say: I feel like crap? There didn't seem to be much value in repeating it.


I fear making this statement at all because YOU are the people who keep me going and sustain me. Being a good friend and family member, being loving, being kind, being compassionate, being empathetic, being generous are THE most important and meaningful things to me in this world. 

I have always been a relationship-oriented person. I thrive on interactions with others and I put those interactions before almost anything else, whenever possible. Throughout my illness my major focus has been on healing and relationships with others. 


The problem now is that while I was on the Rocephin, I started living vicariously through everyone else's lives, and forgot to cultivate my own life. Perhaps I didn't forget to cultivate my own life. I just didn't have energy to do so. Illness has allowed me to be a great observer of life (which can be a great privilege and learning experience), but I would like to balance that out with feeling like more of a participant in life, however possible given my limitations. 


Since getting sick, I have feared that if I cultivated my own interests I would be seen as selfish or, worse, would lose my relationships because I didn't have the same amount of energy for them. This comes from the fact that I already spend SO much time depending on others and taking care of my physical needs.

The challenge for me now is to maintain healthy relationships, to continue to do a reasonable and tolerable treatment plan for healing, and to create my own meaning in life. 

My new treatment is also highly demanding, but thankfully, it does not make me as sick as the Rocephin did. Still, every day is dictated by needing to take medications every three and a half hours for blood pressure along with a long list of other medications and supplements at different times throughout the day, needing to make sure I have the right amount of time to wind down before bed, needing to eat on a regular schedule, drinking the same amount of fluids every day, eating a gluten-free, dairy-free and healthy diet, needing to shower only in the evenings, needing to put on compression hose and a girdle every day, needing to rest in the afternoon, etc. My days are also dictated a lot by how I feel from minute to minute--and I never quite know how that is going to be! Spontaneity and chronic illness do not co-exist. My life is regimented and operates within a lot of constraints. If I'm going to make this new treatment plan the best chance of success, I want to be fully engaged in it.

So, how do I find ways within the constraints of chronic illness and feeling like poo all of the time, to create meaning in life? To engage in activities that fill me up in ways that help to balance out the demands of the illness itself which are what leave me with that overwhelmed and exhausted feeling? How do I still find time to maintain and nurture relationships? How do I continue to do all of the things I need to do daily to create the best environment for healing?

On some level, some of these questions are simply part of the human experience in today's busy world, especially for women who are so relationship-focused. With chronic illness, these challenges are simplify magnified. Like times 100 or so? :P 

Recently while listening to Fresh Air with Mom, the sociologist being interviewed was discussing The Feminine Mystique. She mentioned that women had always been expected to be fully satisfied by their relationships--marriage, children, and friends. But part of being human is to want and seek out meaning in other ways beyond relationships. What Betty Friedan did in The Feminine Mystique was to let women know that it was normal for them to feel restless and not completely satisfied by relationships. The timing of this comment in the context of my current situation certainly gave me pause.

I have always had lot of interests and passions. I have always had a tremendous amount of passion for life. I'm just having a very difficult time coming out of the darkness of the year of the Rocephin. It's difficult to find myself actually feeling worse than I did before I started that treatment protocol. My biggest challenge is not a lack of interest in things or a sense of apathy, it's finding things that I can do within the constraints of my symptoms, brain fog, fatigue, and limited hours in the day. It is also difficult choose between all of my many passions! 

So I am working to find a craft or a cause or a charity that gives me meaning, fuels my passions for this world, and is doable within the constraints of my illness. Right now I find the greatest solace and satisfaction in blogging, so I have been pouring a lot into it. But my ability and energy to do it is very limited and it becomes a bit of an 'all or nothing' project for the day. It requires a 'good day' and drains me a lot, both physically and emotionally, when I am able to do it. What I love about blogging is the combination of creativity, spirituality, writing, photography, and communing with others. I love the tangible product I create. I'm able to communicate with others while also nurturing myself. 


For the many days that blogging isn't possible, I would very much like to find a craft or creative activity that I can do that isn't quite as taxing (and uses a different part of my brain!), as I miss the creative aspects of the activities I used to engage in. I'm thinking, um, coloring might be about my speed? This is not exactly 'meaningful', but a good antidote to the stress in my life. And, it can be done for just a few minutes at a time, while reclining.

My dream job consists of Hillary Clinton starting a foundation for women and girls around the world and me working for her. So, I just have to find a way to do serve the women and girls of the world on a bit smaller scale. In time. Right now, I need to take one step at a time or I'm going to be really overwhelmed!

I have been working on some other things too, but those will have to be part of another blog post. :)

I'm saddened to find myself in this place post-Rocephin, but all I know how to do is keep trying and to keep going. In some ways I've been given an opportunity to really evaluate what matters most to me and use my precious energy for those things. Every activity I engage in is chosen carefully and often with great pains, as it always means giving up something else equally meaningful and important. I'm constantly grieving the inability to engage fully in the world. 

I'm surprised to find myself so lost, confused, and uncertain. The Rocephin treatment left me in a most unexpected place emotionally and physically. I think I'm a bit shell-shocked by the failure of the treatment and by Mom's heart attack. I've always been so clear and directed!


In the midst of desolation and darkness, I am opening myself up for change and transformation. I pray that I find a way to live my life well with illness by creating meaning, engaging my passions, promoting healing, and nurturing relationships. It seems an overwhelming task at the moment (yes, overwhelmed is my "Word of the Day" pretty much every day...). 

It will take time, but I will find my dancing light again...


Thank you to all of you who continue to care, read, love, and shine your bright light in my life!

Blessings,

Emily

Note: I have been editing and re-editing this post for two days now. I'm terrified to publish it. I also think that as I was writing it, I may have started to find my answer. Next post: I promise it will be a 'happy one!' I'm 'letting go' and hitting the Publish Post button. Yikes!

How's That Working For Ya?

Snow falling at night on our backyard maple.

"If you do not have compassion for yourself,

Your compassion is incomplete."
--Buddhist saying--

In my experience the best bodyworkers are also intuitive, wise and insightful people who are continuously growing and learning themselves. 


When Catie was here the other day for a Cranial Sacral Therapy session, we discussed how I was feeling about things. During part of our conversation I said:


"Really, my problem is that I'm just trying to be the person I was before I got sick."


I have the same expectations of myself as I did before my body had any limitations. 


Catie said with humor: "And how's that workin' for ya?" 


I said: "It's not!" 


Every day I hear myself repeating the same script over and over again: "I'm so overwhelmed. I'm so overwhelmed. I'm so exhausted. Life is so hard. Why is life so hard? Will I ever know joy again? Will I ever feel happy?"


I look at my calendar filled with doctors appointments, home nursing visits, paper work, medical phone calls, and all of the things that need to be done to try to function somewhat, and I feel like I'm just trying to 'get through'. 


I don't want every day to just be about 'getting through'. I don't want to feel so completely overwhelmed all of the time. 


This is going to take a lot of learning to let go and a lot of compassion for myself. If I can let go of trying to be someone I no longer can be and accept my limitations, perhaps I can lift that horrible weight of feeling so completely overwhelmed all of the time. I often describe the feeling as never being able to be 'enough'--to myself and to others. 


How does one ever learn to be sick? I know I thought I'd get better at it over the years, but I find it to actually be more and more challenging with each passing year!


Blessings,


Emily

Rocephin and Eat, Pray, Love...

View from my recliner in the den, where I spent a lot of time during the Year of the Rocephin.

Did the Rocephin help? 


I've never really answered this question in my blog, partly because the reality is that I did not see any significant improvements from the Year of the Rocephin.


I do have much less neck pain. I slept better while I was on the Rocephin. And I had a lot of improvement in my Diabetes Insipidus-type symptoms. I did not have what we had most hoped for: an improvement in my ANS issues, especially my ability to sit, stand, and have less autonomic instability overall. 


Since stopping the Rocephin, my sleep reverted to being extremely problematic and the Diabetes Insipidus-type symptoms returned. Dr. Complex feels that the DI symptoms stopped because the Rocephin had an effect on my brain that reduced the symptoms, but it did not deal with the underlying issue. 


When I first met Dr. Complex he asked me what changes, if any, I had noticed while on the Rocephin. As I described the small changes, he said: If I was going to put myself through that sort of treatment, we want to see more than just a couple of small changes. We want significant changes. He has expressed sympathy and frustration for me.


On top of not seeing significant improvement from the Rocephin (and having no idea if I killed off a bunch of Lyme spirochetes or not), I'm also now dealing with a lot of collateral damage and much more deconditioning than I started with before I started the Rocephin.


I went into the treatment with my eyes wide open. I knew that it might not work. I knew that it was a risk. I tried very hard to make the best of the Year of the Pajama. I tried very hard not to have any expectations.


Still, I started the Rocephin right before my 34th birthday, so I focused on 35 being a new beginning and a celebration of feeling better. I often dreamed that I would feel well enough to have a lunch with my closest girlfriends from near and far. I bought the Joshua Bell tickets hoping I'd feel a lot better than I do. 


I don't regret my decision. Trying to treat Lyme disease can be a total crapshoot, and I made the best decision I could have with the tools available to me at that time. For many, Rocephin works amazingly well and many Lyme patients would give anything to have access to the treatment I received. What's so incredibly frustrating is that what works for one patient doesn't always work for another, and finding what does work is often based on trial and error. That's just the reality of where we are at scientifically in how to treat this illness.


As I move farther away from the Rocephin and my body has had time to find a new baseline, it has become very clear that the treatment wasn't very effective, if at all. 


Despite trying desperately not to have any expectations for how I would feel, I am incredibly disappointed--okay, devastated--that I put myself through a year of absolute hell only to still be this sick, and starting all over with a new treatment.  Along the the physical collateral damage, I've been dealing with a lot of emotional collateral damage.


The combination of realizing that the Rocephin didn't work and Mom's heart attack has amplified all of my feelings about life and how to live it well given this illness. I am seriously having an existential crisis! :P Before I even stopped the Rocephin, I had already planned my next step: to see Dr. Complex. So, I immediately went from one treatment protocol to a new and different one. Our basement flooded. Mom had a heart attack and other complicating health issues to follow. Neither of us has had a chance to even process what has happened. Until now. And it's been hitting me like a Mack truck!




When I started the Rocephin, I considered it an opportunity to take some time to truly 'be still'. I thought I'd 'get Zen and all that', watch lots of good movies, listen to all of those books I wanted to, learn to meditate and take time to pray. I was going to come out of the Year of the Pajama like Elizabeth Gilbert at the end of Eat, Pray, Love! Seriously, I do not know what I was thinking?! The reality was that I didn't have energy for anything other than absolute day to day survival and finding some way to 'get through' the hell that so many days felt like.


I guess the Eat, Pray, Love journey waited to start until after the Year of the Pajama? Except I haven't gotten to go to Italy. Hmmm....


Because of the demands of my own new treatments, Mom's many health issues, a lot of medical appointments, as well as the emotions I've been feeling, I've been unable to do email at all lately. (I absolutely hate this, and hate not being able to keep up with my loved ones.) 


I always feel a bit of trepidation when I blog openly about the my chronic illness experience, but I also know that I cannot sit in pain silently. I also know that energy-wise, blogging is my only way of staying in touch. So, I hope over the next couple of weeks, to be transparent and honest about what I am feeling.


Thank you for your continued Love and Patience.  Lisa had NO idea what light she provided in my darkness the night of the Joshua Bell concert!




Blessings,


Emily

Star Struck by Joshua Bell

Me and Joshua

I'm still flying high from a big outing this week to see Joshua Bell in concert. I had no idea that the beautiful concert would be topped off by getting to meet Joshua Bell in person! 

I. Am. Totally. Star. Struck. :)

Lisa (much more about her later!), who was the master behind this elaborate plan for me to meet Joshua Bell, had all of her ushers make sure the entire auditorium was empty except for Mom, Barbara and me. Then, the next thing I knew Lisa is saying: "Emily, look..." and trying to get me to look over to my left. And there was Joshua Bell walking right up to me in the back row of the auditorium! 

He had quickly changed shirts, packed up his violin, and stopped up to see me before heading out to the meet and greet with other patrons.

My autographed CD! It says: To Emily: Great to see you! Joshua Bell.

My sweater and the CD he autographed still smell like the fragrance he was wearing.

Mom knew in advance of the performance that I might get to meet Joshua Bell, so she brought my favorite CD of his along. I have listened to and received great comfort from this CD over the years. I have listened to it hundreds and hundreds of times. I have very few CDs that, at some point, I haven't tired of from listening to them a bazillion times, but I continue to come back to Joshua Bell's beautiful tone. Classical music has become one of my greatest companions.

When I met Wynton a couple of years ago, I found myself completely overwhelmed and tongue tied. This time around, I was able to tell Joshua Bell how grateful I was to him for coming to our town to perform, ask him who his favorite composers are (Beethoven and Schubert...but really ALL of them, he said), and tell him what a great comfort his music has been to me over the years.  I can't believe how calm I was! 

We are truly blessed in our community to have so many opportunities to see such great artists. Wynton is coming again next year, and I am already excited about that!

Here is the auditorium. We sit in the very back row, where my reclining chair is placed on a platform and I can see PERFECTLY.  There is also a 'secret potty' that I can use (since we all know how often I have to pee!). 

Joshua Bell is one of my favorite artists. I bought the tickets several months ago, during the year of the Rocephin, as soon as it was announced that he would be performing here. I remember thinking there was no way, that in seven months time, I wasn't going to be doing so much better and be able to go to the concert. 

Things didn't quite work out that way, and I felt great sadness as I looked towards the upcoming concert and thought about how sick I still am.  Still, while I struggled with tachycardia and other symptoms throughout the concert, I was able to enjoy it greatly. I actually had one of my 'better' days, had rested all day, went to the concert, was able to sleep much of the night (usually if I go out to a concert, I am up all night), and now I've just been crashing out since the concert!

Me and Mom

Here I am with Mom...who almost managed to keep the secret from me about meeting Joshua Bell, but hinted at it during intermission. Oops!

Tonight, Mom told me that she was surprised I hadn't picked up on all of her 'signals' before the concert that I might meet Joshua Bell. She had snuck the CD into her purse, packed the camera, started asking me what I loved most about Joshua Bell, etc. As I wrote in my three blog posts on Wynton (1, 2, 3), just  being at the concert and being in the presence of such a musician, was enough. Since Lisa had already helped me to meet one (and my first ever) famous person, I really never gave it a thought that I might get to meet another of the world's greatest musicians. Mom wanted me to be more 'prepared' in terms of knowing what to say to Joshua Bell, instead of turning into a bumbling idiot as I did with Wynton!

Me and Barbara

Our dear friend and neighbor, Barbara, who went to the concert with us. She is a great lover of classical music and has come with us to all of my big concert outings over the past couple of years. She was there when I met Wynton too!

Me and Lisa!

And finally, a photo of and a tribute to, Lisa. Someday she will tell me the story of how she managed to get Joshua Bell to meet me! 

When I go to a concert, it is a huge ordeal. I never know how I am going to feel. I buy the tickets months in advance and pray that I'll be able to go. Mom has to take my reclining chair to the theatre in advance of the concert. Lisa has a wooden platform that is placed in the back row with the chair on it. 

When I arrive at the theater, somehow Lisa finds us in the crowds and escorts us immediately back to the seating area, even before others have been let into the house. This way, I'm not exhausted before the concert even starts! She checks on us, chats with us, and makes sure her staff are completely aware of and in tune to our needs. 

When the concert is over and the house has been cleared, she makes sure her staff are ready to carry the reclining chair out to our car, has a path through the crowds for my wheelchair, and a staff member ready to open the doors for us. 

I spend the days before the concert resting, and the days after crashing out. So, it has to be an outing worth that much energy!

Seriously. I'm crying writing this. What is so humbling about all of this is that Lisa does everything intuitively. She does it without asking for anything in return (except a big huge hug, which I am happy to oblige!). Everything that needs to be done to make it possible for me to attend a concert occurs so seamlessly that I don't even realize all of the effort that was put into it behind the scenes until I arrive home. 

So much organization and effort goes into making it possible for me--one person--to attend a concert. Lisa has an entire staff and thousands of patrons to attend to.

Cover of the Program

When I arrive at the concert Lisa is ready and waiting with a huge smile and a huge hug. Her true gift is doing all of what is necessary for me to come to a concert without making me feel that I am a burden in any way. She and her staff attend to my needs, but somehow I don't feel that my disability matters. In fact, I don't feel like that is at all what Lisa sees. It took so much for me to make the call to her in regards to attending my first concert as a person with a disability a couple of years ago, and Lisa has made every outing a joyful and wonderful experience. 

I don't have to spend any of my energy worrying about how I am going to navigate the crowds or if I will have to sit up and wait too long or not be able to get to a nearby bathroom. I just get to go to the concert and everything is taken care of. I don't know how Lisa knows so perfectly what I need to make going to a concert possible, but she does!

Brahams, Schubert, Grieg, and extras at the end, including Chopin's Nocturne, which is on the CD I have.

Maybe my body isn't functioning the way I had thought it might be when I ordered the Joshua Bell tickets several months ago. I didn't walk in myself and sit up in 'regular' seats like I had dreamed about.     

But a little village of people created a different dream, one that lifted me out of my sadness, and gave me memories to cherish during my difficult days. I admit, I felt a bit like a princess when I went to the concert and met Joshua Bell. 

While much of me feels undeserving of Lisa's immense kindness and doesn't really understand why she spoils me so much, I will say that she has gifted me more than she will ever know. She is like a little angel that swoops in during my darkest times and finds a way to lift me up and remind me what is beautiful in life. The power of the moments she has created--the light in the darkness--cannot be underestimated.

I am so grateful for this outing--the gift of the music, the gift of meeting Joshua Bell, the gift of Lisa, the gift of Mom and Barbara, the gift of feeling well enough to enjoy the concert, the gift of living in a community that values the arts--that it will help to carry me through my many homebound days. And keep me looking forward to my next outing to a concert!

Still Star Struck and feeling immensely blessed,

Emily