Happy Seventh Birthday Asher!

On Wednesday we celebrated Asher's seventh birthday! It was definitely the highlight of my day, since the rest of my day was spent sleeping post-bicillin shot. Asher spent the day sleeping at his post in front of my bedroom door, waiting for me to get up, and making sure that I was okay. Keeping watch of me is his full-time job around here.

The big question is will he start to mellow out now that he's becoming an old man?

Mom brought up some heavy cardboard boxes so that we could package his presents in them with tissue paper. Somehow Asher has come to love boxes, and anytime a package arrives he thinks it's for him. I wonder how that started? Hmmm....maybe he got a lot of packages of toys and goodies when he was little?

One day when I wanted to try to go on one of my 'outings' we decided to make a trip to the locally owned pet store. Asher got to go along too! He was the 'star' at the store and even got to see his Aunt Betsy.

I had a blast picking out his birthday presents, spending an obscene amount of money on an organic, eco-friendly dog toy and just being able to get out of the house for a little trip. I also got a new ring for outside play (his very favorite toy of all-time, so much so that we are on at least the fifth one of these things!). I think he liked the butterfly squeaky toy from my friend, Sarah, (who was here visiting this past weekend) the best! (Thank you Sarah!)

What a spoiled pooch! He also got a few bites of fillet mignon leftover from our dinner earlier in the week. I made him work hard for it though--roll over, sit, stand, circle left, circle right, shake, wave, which hand?, down, look, pretty boy. I think he had a pretty darned good birthday.

Doesn't he look like a very happy birthday boy? Look at these cool toys! :)

Happy Birthday to our Asher Dasher!

Blessings,

Emily

For Asher's Biggest Fans: The Birthday Video

This is for you die-hard Asher fans (Erika! :)). In our house we think Asher is more entertaining than TV. He reminds me of a toddler who likes the boxes better than the present!

Lyme Log: Pressing Ahead...

After a phone consult today with Dr. Lyme, we have decided to add in yet another medication to my current 'cocktail.'

On Tuesday I will not only get my bicillin injection, but also start taking a teeny-tiny dose of the antibiotic Zithromax (1/2 of a 250 mg tablet once a week).

This brings my Lyme cocktail to four medications: Bicillin, Zithromax, Plaquenil and Malarone!

We decided that since I already feel miserable on the days after my shot, I might as well just keep the misery contained to as few days as possible and take the Zithromax on the same day that I receive the bicillin shot.

Hopefully this will mean that I will still get my two to three 'good days' each week between shots.

The risk is that it will be too much for my body to handle at one time, so we will see!

As always, before I begin any new treatment, I am a bit anxious.

Why did we decide to add in the Zithromax right now?

Hopefully it will work synergistically with the bicillin.

Also, different antibiotics target different parts of the body better than others.

Since the Lyme bacteria is disseminated throughout all areas of my body we need to be targeting as many areas as possible. My fear is that if we do not stay 'on top' of the Lyme in different areas, it will just be building up in the areas we are neglecting while we're busy focusing on another area.

The bicillin targets muscles, connective tissues, and organs (such as the heart, spleen, liver), but it does not target the Central Nervous System (CNS) (just to confuse you more this is different than the Autonomic Nervous System (ANS)). Symptoms of Lyme Disease that has been disseminated to the CNS include cognitive problems/brain fog, headaches, difficulties sleeping, and mood problems.

I suffer from extreme cognitive problems (still cannot focus to read a book) and sleep problems (what WOULD it feel like to fall asleep on my own just because, well, I needed sleep and felt tired?! What would it be like to sleep through the night and feel rested?). I do struggle with anxiety and sometimes depression, but it's hard to know how much could be CAUSED by the Lyme vs. just part of who I am and part of being a person living with chronic illness. (There is a high rate of co-morbidity between chronic illness and depression--which makes intuitive sense!)

So, adding in the Zithromax, which DOES target CNS symptoms seems like a logical next step.

I had hoped to add it in sooner and had hoped to add it in at a point when the bicillin injections were not still so difficult, but we are going to press ahead despite the fact that the bicillin injections have not become any easier. I'm still knocked out for days after the shot!

I haven't written a Lyme Log for a long time...I am about to get my 15Th bicillin shot tomorrow!

I feel like I'm moving soooo slowly with the treatment and require such baby doses (which I am and I do) and this can make me feel like I'm in some way 'failing' because I can't tolerate higher doses and because I am not getting better faster. Today, Dr. Lyme said to me: "You're a prime mover in trying to press ahead." I almost cried. They were just the words I needed to hear the day before I head into another gruelling few days post-bicillin shot.

As always, thanks for your good thoughts as I start another new medication that could make me sicker (okay, likely WILL make me sicker, because, well, that's the breaks of this game unfortunately).

Blessings,

Emily


Photo: Irises getting ready to bloom at the end of May.

I'm an Aunt!

I am very excited to share the news that I am an aunt!
My friend, Carrie, and her husband Sam welcomed baby David to the world in June. He was a whopping 9 lbs. 7 oz.! :)

Since I don't have any siblings, I am so excited to be an aunt to Carrie and Sam's baby! Thank you, thank you, thank you Carrie and Sam for the blessing of letting me be Aunt Em to David.

This pic is from the hospital after the birth...aaawwwwww...

Carrie and a mutual friend, Britt, had planned a trip here earlier this spring while Carrie was prego so that we could all have one last girls weekend together before Carrie had her baby. Unfortunately, Carrie got the flu and the trip as cancelled. Britt and I are still keeping our fingers crossed for a visit--as we haven't met except to plan Carrie's wedding shower and such together via email and phone! Not getting that visit in was a major bummer for all of us.

I was really hoping to see Carrie in her pregnant state, since last summer I got to see Loralea and Marla pregnant. I was beginning to think there was something to pregnant women flocking to my house at the six month mark!

So, the best I have is a picture of Carrie at the six month mark. I have no idea what she looked like at the end of her pregnancy, because despite my badgering her for a photo of her self-described humongous state, she wouldn't send me a photo! However, we now know why she was so big--she was carrying a very big baby!

When she telephoned from the hospital, she said, "...we had a boy. His name is David...and get this Emily...he was 9 lbs. 7 oz...."

Here's a great picture of Carrie, Sam and David.

All throughout the pregnancy, Carrie and Sam nicknamed the baby "Roscoe". Now, we're all having trouble breaking the habit of calling David, well, David. So Carrie keeps signing his name as David-Roscoe!

Congratulations to Carrie and Sam!
And welcome to the world baby David!
I wish so much I could be there to meet him!

Blessings from Aunt Emily

Note: To protect David's privacy, I waited to post so that his date of birth would not be known, as well as any other identifying details. I get a little paranoid about protecting people's privacy, especially babies!

Happy Dancing! Happy Friday!

"Dance is the hidden language of the soul."

--Martha Graham--

I received this web link from my friend, Angela, with the note: "I don't usually surf videos or pass them along but this one just made me smile."

http://www.vimeo.com/1211060

I knew that for Angela to pass it along it must be good because she, like me, doesn't send forwards or links often.

I thought it was appropriate for a blog titled 'Dancing Light's Studio Notes'!

Plus, I couldn't help but smile the entire way through the video. So, what a nice ending to a long week. Hope this brings you a smile this Friday afternoon.

Blessings,

Emily

A Very Big Fourth of July!

Well, I seem to be a little behind (more than a little!) on my blogging lately. I got these pictures downloaded right away when we got home from my BIG OUTING, but then never got the text written. So, here it goes!

I am absolutely thrilled to report that I was able to go see our local fireworks on July 4th. Mom and I joined over 70,000 people to see a spectacular fireworks show! (Many thousands more people watched from various sites around town.)

This is probably the biggest outing I have been on to date.

We made a very last minute decision to go after I awoke pleasantly surprised to be having a 'good day' on the fourth.

Here are some pictures of the night out...I wanted to capture the whole scene!

They had a hot air balloon suspended in the air with the mountains in the background. I wonder who the folks were that got to watch the fireworks from the balloon basket!?

I took my big yellow reclining chair. We found a spot along the road just big enough for two chairs. No one was in front of us because we were right at the edge of the road. We had a perfect view (and a very noisy one) of the fireworks. It was a cool and clear evening (very unusual for the fourth of July!), which meant that I could manage well and the fireworks were perfect, as the smoke was not trapped by a bunch of heat and humidity. We sat next to a wonderful couple, who took a picture of us together at the big event!

This is the view from were we were sitting. The fireworks later lit up the sky above.

The Fireworks!

And here are the fireworks! (I had a little bit of a challenge capturing them with my camera as I had no idea there was a special 'fireworks' setting until that night! I also ran out of space on my memory card before the finale! Oh well.)

The fireworks are synchronized to music (super cool) and are said to be one of the top ten displays in the country.

During recent years, we have just watched the fireworks on television. The last time I actually went up to the main site to see the fireworks was 10 years ago. I remember that time so vividly--as I was so sick, I was gasping for air the whole time, I could not walk from the car without resting, and we had no idea why or what was happening to me. It was a miserable experience. And, many other fourths since then have been spent with emergencies like beta-blocker withdrawals and other not-so-pleasant memories.

I have been able to see the fireworks a couple of years from other sites around town, but this year was extra special because we had a PERFECT view and were right in the midst of all of the action.

The fireworks are pretty spectacular even on TV, but they were extra-spectacular in person. Plus, I have to say, what a way to start off this decade of illness with a special happy occasion. Finally, a fourth of July that was filled with absolute joy and triumph.

As I sat and watched the fireworks I just kept smiling to myself as I was so happy to be there. I even called Jeannine and Dad from my cell phone and said, "Guess where I am?" Later that night, Jeannine called and said, "Congratulations!" She 'gets' this illness so deeply. I said to my mom, "I'm just so happy." She says it's easy to make me happy. :)

So, you might be wondering how we even made this outing with my big yellow chair and my limited walking energy. At the last minute, I decided I really wanted to go to the fireworks. I discovered that we could purchase a VIP pass for $20 and have access to a lot close to the fireworks. We were able to zip up to the site in 10 minutes, park right near where we sat, and zip out of the fireworks and be home in under 20 minutes! Without the parking pass we would not have been able to do this outing because of all of the walking and traffic involved. It was worth every penny for a night out! The biggest challenge? No where to get to a nearby potty! Please get me a new bladder!

The top picture is of my favorite kind of fireworks. The one right above here is of the ground fireworks which are lots of fun too! And the rest are just because I couldn't resist posting lots of pictures from this outing!

I felt pretty crappy the following two days after we went to the fireworks, but while we were there, I felt really well. I was amazed. The next day, when I was feeling yucky, Mom said, "Was it worth it?" And I said, "Yes, definitely." It was. Still, I did feel a tinge of sadness that I had to pay a price for the outing. I await the day that there will not be a consequence to joy.

Blessings and hope you had a good fourth (a little belated!),

Emily

eHarmonizing: Part I

Yes, I admit it. I'm on eHarmony these days. I officially joined January 30Th of this year, after spending endless hours filling out the VERY long questionnaire. Sometimes I call eHarmony 'ePersonalGrowth' because it forces me to think about aspects of myself that I have never thought about before.

What are the three best traits you have to offer a partner? Other than love, what is the one trait you have noticed in couples with a successful relationship? What personal habits are important to you? What is your sense of style? Are you sexy? Are you attractive? How important is the race, religion, education level, etc. of your match?

The hardest part had to be picking the ten "Must Haves and Can't Stands" for a partner. I mean, who wants a gambler, a sex addict, a drug addict, a racist, a total slob or those such things anyways? These are kinda givens aren't they? But you only get to pick 10 of those you can't stand. And the same goes for the Must Haves. Kindness, Emotional Stability, Acceptance, Chemistry, Family and Marriage, etc. I must have spent hours pouring over the lists in each category trying to choose ten Must Haves and ten Can't Stands out of about 50 in each category.

I mean, I had better take this seriously right? This is my potential marriage partner I'm thinking about.

Even if I don't meet the love of my life, I will have certainly had quite the experience in personal growth. eHarmony will have profited from this growth...but it is still much cheaper than therapy!

So why did I join eHarmony this year?

First of all, my friends Angela, Erika, Marcy and Celeste were all on my case to do so! :) I also talked with a fellow DINET friend who bravely entered the online dating world at the same time. Okay, maybe 'on my case' is not a very nice way to put it. My friends enthusiastically encouraged me to join. They told me that it would be a good way for me to learn to communicate with men again, to ease back into the dating scene, to find men who might be willing to accept my illness, to try dating in a way that worked with my illness and my fears that surround dating, etc. Angela suggested that I would be able to try different ways of telling men about my illness and see how they responded and figure out what worked.

I was concerned about joining eHarmony given my already stretched and limited energy. Would I be able to add this to my life? Was this the 'right time'? Is there really a 'right time'? I already felt and feel that I can't keep up, I'm always overwhelmed, and I'm never in touch with those I love as much as I would like. Would joining eHarmony jeopardize my friendships and family relationships? Would my friends feel that I had chosen spending time on eHarmony over emailing them? Or would they embrace my leap into the search for love and marraige? Would I be able to balance the two? As my inbox tops 900 messages, I'm not sure I've succeeded. But, I'm not sure I would be doing much better at email without being on eHarmony. How do we pursue the new and sustain the old that we love?

In the end, with the support and encouragement of friends, I took the leap and officially joined eHarmony.

I have a HUGE fear of dating. I'm terrified. Absolutely terrified. Panic attack terrified. Okay, maybe not full-blown panic, but pretty darn scared. Beyond some mild butterflies!

But, I also know that I want to get married. And if at all possible, I want to be a mom. I have had a lot of time these past ten years to think about what I really want in life. And these are two things I really, really want.

By joining eHarmony, I made a strong statement about myself and to myself.

I didn't just join for the heck of it.

By joining I sent myself some very strong messages.

First, I said that if I want to get married, I have to put myself out there. I cannot say at the end of my life that I never got married and whine about it if I did not at least try. Whatever the outcome in my life, I have to know that I tried for what I wanted most.

I also stopped waiting. I stopped waiting to get better before I would give dating a try. I always thought this was how it had to work. I mean, I had to get better first right? I have some very negative and powerful scripts playing in my mind. The scripts that say: But you are sick. Who would want to be with you? Who would want to take that on? You would only be holding someone back. Who would want to deal with all of this crap? What if you can't have children or get well enough to adopt? What can you contribute to a relationship?

But there's another part of me, too. The part that says the following:

I am deserving of love and I have a lot of love to give.

I have been sick for ten years, and illness is part of who I am. But it is not who I am.

I've been changing my entire life script in 2008, and this is just one piece of it.

I have received tremendous support from the few friends I have told about this. Angela has reminded me that we can be surprised. That there are men who will 'get' it and love me anyways. Marcy is practically waving pom poms. She is also dealing with all of my neuroticism! Carrie reminded me that I will learn that there are men who will love me, even if just as a friend, for who I am. I almost cried when she said to me that I am lovable to others and will be lovable to others who did not know me before my illness. "There are people in this world, other than just your friends who love you now," she said, "who will love you and see what you have to offer."

I hear stories all of the time of romance in spite of illness, of love in spite of even the worst of scenarios. And I've heard quite a bit of eHarmony success stories too.

It's hard to change long, overplayed, overused, negative scripts. And they easily creep back in, especially on my sickest days.

Regardless of the outcome on eHarmony or other possible dating pursuits, I cannot say that I did not try for what really mattered to me.

And, maybe, just maybe if I tell myself often enough that I have a lot of love to give and that I am deserving of love, I will truly believe it.

Blessings,

Emily

P.S. I have fallen in love with the term "eHarmonizing," cleverly coined by my friend, Kristen. (She's hilariously funny in spite of her great pain and suffering.)

P.P.S. Oh, I must wrap up now, as my gmail just 'dinged' that I have a message from someone 'special' on eHarmony. Yes, I'm a bit twitterpated. And freaked out! :) But, you'll have to wait for Part II on eHarmonizing.

Photo: Pink peony bud in our yard earlier this spring.