Sarah and Bob Visit: A Pleasant Afternoon, As Always

Time to get caught up on blogging about July's visitors! On July 15Th Sarah and Bob came over for an afternoon visit. As always, it was a pleasant and relaxing visit. Why did I choose the word 'pleasant' rather than 'wonderful' or another adjective? The word reminds me so much of what my parents both say after an enjoyable visit with friends. "Oh, we had such a pleasant evening" or "It was a pleasant visit." So, rather than seeing this as a 'blah' word, I've learned to view remarking on a visit with friends or family as 'pleasant' as a compliment.

I'm pretty spoiled by Sarah, since she is a townie and we get to see each other several times a year when she comes home to see her family. She always comes bearing some sort of 'treat'--this time it was an album of her and Bob's recent honeymoon on a Disney Mediterranean cruise. And Bob always comes bearing a new batch of CDs for me to listen to and discover new music. I think Sarah is responsible for my entire butterfly collection in my bedroom!

Sarah is, as a friend, steadfast, loyal, faithful, patient and loving. She's also hysterically funny, goofy, and places great importance on embracing her inner-child, which I love! She's the friend who calls once a week, no matter how many weeks her calls go unanswered. She keeps calling and leaving messages just to say "I'm thinking about you. If you can call me back I'd love to talk to you but if you can't I understand. I love you and I miss you." Over and over, without seeming to get weary.



Sarah and I met in band (of course!) when I was a freshman and she was a sophomore in high school. We've been friends ever since, and grown closer over the years.

I'm always looking forward to her next trip home and our next visit, and I'm enjoying getting to know her new husband. AND I can't wait to meet her new puppy that they got just two days after they were here! Hopefully she'll be potty trained by then?!

As always, thanks for a 'pleasant visit'!

Love,

Emily

Photos: Sarah and Bob looking all cute. Pretty in Pink--me and Sarah (wearing her Disney cruise shirt, of course!). Yes, I want her skin tone! Yikes, sitting next to her amplifies my paleness!

Asher: The Birthday Boy!

Yum!!!!! This Frosty Paws tastes soooo good, especially on a hot, muggy evening like this! Alexandra, our neighbor girl, came over this evening to celebrate Asher's birthday. He very much enjoyed the celebration! He also is looking quite dapper for the photo shoot, as he also made a trip to the groomer today. I LOVE how he feels and smells when he comes back from the groomer! HAPPY BIRTHDAY ASHER DASHER!

Me and my favorite little girl, Alexandra! We spend many an evening together. Today she and her dad arrived with a teddy bear named Slumbers for me (to help me sleep) and a bag of goodies for Asher--he quite enjoyed 'opening' the brown paper bag from the grocery store to discover a toy and treats! He got very spoiled! Thank you Alexandra and Scott!

I can't believe we've had Asher for a little over 5 years now! We adopted him on May 6, 2002 and today, July 30, he turned 6! He still acts like a puppy though. Once a Wheaten always a Wheaten!

Here are a bunch of pictures from the past year. In addition to being called various names such as Cuddlebug, Lovebug, and Asher Dasher, he has now acquired a new name from our neighbor, Anne (Alexandra's mom)--Goofy Doofy. It seems to fit him quite well. He has a tendency to run into things and such!

Above is him playing with his absolute favorite toy. We've had about three of these so far. No matter what other 'outside' toys we have bought him over the years, he only wants to play with his tennis ball ring!

All tired out!!! Boy, all that playing was hard work!

I like this picture from last fall of his sweet face!
Always in on the action! Giving me birthday kisses and wishing some of those presents were for HIM! Every time a package arrives he likes to 'help open' it...and I think he supposes maybe it will be for him? Toys or MachoStix please?
Ready for a romp in the leaves (best to wait until Mom has raked up the piles all nice and then run through them so she has to rake them again!) and ready for Halloween in his 'Boo' bandanna. He really likes the camera, can you tell?
Looking handsome as always and nicely groomed. And, if there is an ottoman to be found, it's his. Lord Asher.
Mom took this picture of him through the sun room window this past winter. He was just lying on the snow! For some reason I find this picture hilarious. Goofy Doofy for sure.

Definitely another favorite from last fall. He's outside enjoying the fresh air, the breeze through his hair, and his favorite toy right next to him. Aaaah, pure happiness.

Happy Birthday Asher Noam!

Blessings,

Emily

Ambien: Letter SENT to My Legislators!

For those of you still following the 'Ambien Saga', today I emailed the following to ALL of my state legislators. So, I'm keeping up the fight. I have removed all identifying details for privacy purposes. I felt proud of myself for doing this...I've always been politically aware and ALWAYS vote, but I've never actually written to any politicians!

I'm already fired up about the 2008 elections and I love getting my friends all fired up too--especially the ones who I know will go nuts when I tell them who I'm voting for! :) All in good fun...

While I appreciate the nurse case worker from MA, we are both equally in the dark about what in the world MA wants me to do in order to get Ambien (and she WORKS for them!). It's ridiculous!

Dear Representative:

I am writing as one of your constituents who is a person with a disability and a recipient of Medical Assistance (MA). I am also sending this to other state legislators.

MA continues to make it more and more difficult for recipients to receive services and medications, especially since its induction of stricter formularies and a hearing process to receive denied medications.

I am using my case to make you aware of what horrific circumstances MA recipients are going through to try to receive necessary medications. I have attached direct links to entries on my blog describing my experience.

The first entry is an explanation of the demeaning process I went through: http://adancinglight.blogspot.com/2007/07/ambien-hearing-fight-for-something.html

The second is, in essence, a letter to YOU: http://adancinglight.blogspot.com/2007/07/ambien-letter-to-my-state.html

I ask that you read these entries, as I speak on behalf of ALL MA recipients going through the same struggles.

I also ask that you intervene on my behalf to help me receive this medically necessary medication.

I thank you for your good work and service over the years to our state.

Sincerely,

Emily

My Love of Music Inspires "Weekend Lyrics"

Music is a moral law. It gives soul to the universe, wings to the mind, flight to the imagination, a charm to sadness, gaiety and life to everything. It is the essence of order and lends to all that is good and just and beautiful.

--Plato--

Since I was a little girl, music has been an integral part of my life. I used to wake up in my crib each morning singing. I would 'conduct' to the music on the radio or on the record player. I loved when my dad would sing Swing Low, Sweet Chariot while he rested my head against his chest and I could feel the vibration. I sang along to the 'Wee Sing' tapes over and over again. (Too bad all this practice resulted in absolutely NO vocal talent whatsoever!)

Now, I own more cassette tapes and CDs than I care to admit. By age 3 1/2 I was taking dance lessons. I danced for almost 20 years of my life, expressing music through movement. Then there were piano lessons, musical theatre performances, and lots and lots of playing the saxophone--in concert band, symphonic band, jazz band, marching band, and summer theatre.

I always listened to music but admit that I spent more time playing music or dancing to it than I dedicated to really listening to it. Music, especially in band, was often a social outlet rather than a time of introspection. This does not dismiss the incredible learning that took place in the band room with Mr. K and Mr. V. Without those formative experiences--in dance, band, and theatre, I would not have come to love music in the way I do now.

During the past three years, music has taken on a new meaning in my life. Many days it sustains me. I have learned to spend hours lying in bed simply listening to music--not doing something with music, just being with music. When I can do nothing else other than lie in bed sick, music is something I can often use to soothe my spirit.

After my gallbladder surgery in January 2005, I remember waiting all day for 8 pm to arrive when NPR's Performance Today with Fred Child came on. And I couldn't wait until Wednesdays to listen to the Piano Puzzler. I started to really learn about music from this show. Noise from any other source--a TV, music with lyrics, a book on tape were too much for me to handle.

Having to lie in bed and rely completely on listening to music to sustain me through those horrific days changed the role music played in my life.

I always listened to music--blasting it on my car stereo, singing along out-of-tune, buying the latest music, learning about new artists. But I never really took the time to care if it was something beyond my favorite classical artists or pop artists.

Now, I spend every night before bed listening to music--really listening to music. I find meaning in the words, healing in the melodies, and comfort in the beauty of it when nothing else can comfort me--physically or emotionally. Some nights when I am too tired, weary and sick, I can listen to only the quietest of music--like the soothing sound of the Native American flute.

I have learned that I, literally, need music to sustain me, to nourish me, to hold me up, to keep me hanging on when I think I cannot.

This 'new and different' love of music is what has inspired my new weekly feature called 'Weekend Lyrics'. I have to admit I got much of this idea from my friend, Tess' blog, where she has 'Saturday Art' as a weekly feature.

On Friday nights, at the end of a long week (and this week turned out to be an especially trying one), we light the Sabbath candles and for a moment we remember to be still, quiet, prayerful and see God's light in the flickering candles.

And so, it seems the weekend is a perfect time to reflect on the week past and the week to come through song lyrics.

A moment of pause.

A moment to stop and appreciate the beauty and gift that God gave us in music.

And, I think also, a perfect addition to Dancing Light's Studio Notes. I hope you will think so too.

Shalom,

Emily

Photo: Blanket flower next to our mailbox.

Weekend Lyrics: Unwritten

Unwritten by Natasha Bedingfield

I am unwritten, can't read my mind,

I'm undefined I'm just beginning, the pen's in my hand, ending unplanned

Staring at the blank page before you

Open up the dirty window

Let the sun illuminate the words that you could not find

Reaching for something in the distance

So close you can almost taste it

Release your innovations

Feel the rain on your skin

No one else can feel it for you

Only you can let it in

No one else, no one else

Can speak the words on your lips

Drench yourself in words unspoken

Live your life with arms wide open

Today is where your book begins

The rest is still unwritten

Oh, oh, oh

I break tradition, sometimes my tries, are outside the lines

We've been conditioned to not make mistakes, but I can't live that way

Staring at the blank page before you

Open up the dirty window

Let the sun illuminate the words that you could not find

Reaching for something in the distance

So close you can almost taste it

Release your inner visions

Feel the rain on your skin

No one else can feel it for you

Only you can let it in

No one else, no one else

Can speak the words on your lips

Drench yourself in words unspoken

Live your life with arms wide open

Today is where your book begins

Feel the rain on your skin

No one else can feel it for you

Only you can let it in

No one else, no one else

Can speak the words on your lips

Drench yourself in words unspoken

Live your life with arms wide open

Today is where your book begins

The rest is still unwritten

Staring at the blank page before you

Open up the dirty window

Let the sun illuminate the words that you could not find

Reaching for something in the distance

So close you can almost taste it

Release your inner visions

Feel the rain on your skin

No one else can feel it for you

Only you can let it in

No one else, no one else

Can speak the words on your lips

Drench yourself in words unspoken

Live your life with arms wide open

Today is where your book begins

Feel the rain on your skin

No one else can feel it for you

Only you can let it in

No one else, no one else

Can speak the words on your lips

Drench yourself in words unspoken

Live your life with arms wide open

Today is where your book begins

The rest is still unwritten

The rest is still unwritten

The rest is still unwritten

Oh, yeah, yeah

Why I chose these Lyrics: Originally I had intended to post lyrics from a more 'deep' song or artist. When my friend, Erika, tried to get me into Natasha Bedingfield's music I looked at her with eyebrows raised and said, "I don't want any of that bubblegum pop stuff!" But Erika was right, this young artist from Sussex, England has put out an album worth listening to. (And it doesn't pass me by that Bedingfield is from Sussex, England where I studied abroad junior year of college).

And now I've got Maxine, my massage therapist/spiritual counselor, singing these lyrics non-stop. She came over one day and said, "Hey, I heard this song on the radio and it has these words in it. Do you know it?" I said, "Of course!" and promptly turned on my iPod and blasted it through the stereo. "Is this the song you're thinking of?" I said. "YES!" she said. And why aren't we at all surprised I have it on my iPod? we joked. Should've gotten the 80 GB model!

So, the song just keeps coming into my life through different people...

I think this song is a perfect first entry for my 'Weekend Lyrics' because I am finally finding my way back to writing again and, that in itself, fills me with such gratitude. In a way I think I'm also finding my way back to myself through my writing. I have also felt new healing. So, I feel so much is unwritten and so much is READY to be written--in words and in life.

Photos: I couldn't for the life of me get this picture of a gladiola on it's way towards blooming the way I wanted it. But, then again, maybe that's the point? That this growing gladiola, my photography, my writing are all still imperfect? A work in progress? So, I left it as is and felt, in the end it was a 'perfect' picture for this set of Lyrics. The second photo is simply a picture of Natasha Bedingfield's album cover (which I just downloaded from amazon.com and realized she has a NEW album out. Oh no!)

Ambien: A Letter to my State Representative

Today, I had hoped to spend the day making a few 'business calls' and move 'onward' with my blogging about my latest week of visitors. Instead, I've started off another week, another Monday consumed emotionally and physically by the 'Ambien saga'.

So, as Carrie would say, today "I've got bigger fish to fry" and as my friend, Jessica said about the whole Ambien hearing, "I'm so angry I could spit!" She's right on.

Aaah, yes, and one of the things I am supposed to do with these illnesses is avoid stress? Oy vey!

At this point, especially after today's interactions with an MA nurse case worker, I plan to send my blogs on this topic to my representative. He must be made aware of the injustices happening to MA recipients around the state. As I look back at the entry I wrote today, I realize that it IS, in fact, the letter to send to my state representative. As I wrote, I realized that I was writing to him, more than perhaps to my 'readers and subscribers' (your opportunity to skip out on reading the following novel!)

What I learned from my friends after my first post on Ambien is that I have kept quiet about the battles I fight every day, year after year: the miserable battle for SSI, fighting for my other standard medications each year, last year's Ambien hearing, etc. Through my DINET friends, I know that they are fighting similar battles every day also.

Today's scenario:

As I mentioned in my previous entry on Ambien, at the end of the hearing the doctor (off-record) offered me a nurse case worker to 'help me understand' things. Apparently, when a person becomes disabled they also become stupid. Over the past nine years, I have been 'taught' that I am stupid countless times by those individuals whom we as a society most expect to treat others with respect (such as doctors, case workers, etc.).

Today I spoke with the nurse case worker assigned to me. Although she is very nice, and has reminded me 'not to shoot the messenger', she is of little or no help in the end.

The doctor (I'll call him Dr. T) also promised me, when pushed by the ALJ, that after the hearing I would have in my hands a copy of the 11 points of sleep hygiene. I have NOT received this and the nurse case worker had not received any information about this.

Toni, my nurse case worker, has IN HER HANDS, a copy of the denial by the ALJ dated July 16Th--the date of my hearing. I HAVE NOT received the a copy of the denial.

According to Toni, the denial states that I must have an evaluation of sleep hygiene by an ABSM certified doctor. The closest place she can find on the website given by Dr. T (www.sleepstudies.org) to have this done is 1 1/2 hours away.

Let me also mention that this nurse, whose job is to 'help me' and after I 'follow through' on my sleep hygiene study present my case to Dr. T, DID NOT know what an evaluation of sleep hygiene was OR what an ABSM certified doctor was.

I can find all of this information online, call the nearest sleep hygiene center, as well as call around town AGAIN to see if any of the doctors in town are ABSM certified (a NEW stipulation that had not been given to me previously). I am assuming ABSM stands for American Board of Sleep Medicine.

And, as discussed before, sleep hygiene refers to common sense questions such as: Do you eat in bed? Do you drink caffeine before bed? Do you drink alcohol? Do you have a good bed? Do you have a darkened room? Do you have noise control? Do you exercise (but not more than four hours before bed)? Do you avoid watching TV one hour before bed? Do you listen to quiet music or engage in another quiet activity before bed? Can you tell I've been over these a few times in the past nine years with various doctors? No psychiatrist would have prescribed Ambien to me in the first place without first assuring that I was practicing good sleep hygiene to the best of my ability. Filtered through the MA lens, these cut and dried questions do not take into account a person, such as myself, who is sometimes too sick to get out of bed to eat, or too sick to exercise, etc.

Today, I was the one who explained all of the above to Toni. I was left with the responsibility to find out what exactly a sleep hygiene study is and if a doctor locally can do this. I also encountered resistance when I asked her to contact the doctor and request the list of sleep hygiene points that he promised me (and, during the hearing, had admitted under duress that I met 7/11 criteria in the letter he had not read before the hearing).

Now, I have VERY limited energy. Taking the time to do all of this research and make these phone calls will take several days of my time. If, as I have mentioned before, I was poor and uneducated, I would not even have a computer or be able to research these things. So, how much is this nurse case worker really doing for me? Or someone without such resources?

If I must travel 1 1/2 hours away and the sleep hygiene study requires an overnight, my parents must pay for travel and overnight stay in a hotel room. Why not just keep paying for the Ambien as we already are doing? Why put my body through this when the price I will pay for travel and perhaps several days off of Ambien will be horrific?

It seems today I was the one 'helping' the nurse to understand what Dr. T specified in the denial, rather than the other way around.

At the end of my conversation with Toni, I flat out asked her if putting myself through all of these hoops would even result in me receiving Ambien. She could not answer and had no idea.

I also want to address here all of the responses I received to my first entry on Ambien, in particular the question of whether or not I could get a lawyer to help me win my case.

Last year I also had a hearing that went quite similarly to this past one. It consisted of the same ALJ judge, a different doctor, and ultimately the same outcome, however with different 'specifics' in the denial.

In order to begin receiving SSI and MA, I hired a lawyer who specializes in disability. The only work he does is SSI and SSDI cases. I travelled out of town to find him, as no local lawyers handle disability cases. Why? Because there is no money to be made. My lawyer, Charlie, spent endless hours working on my case to win SSI, yet he is entitled to only a small percentage of my retro-pay and current pay, an amount totaling about $250! When I was up for renewal this year, he again handled my case at NO CHARGE.

When I needed a lawyer last year for my Ambien hearing, Charlie volunteered again to help me at NO CHARGE. However, what is VERY IMPORTANT TO NOTE HERE is that the laws MA has created to get medications are brand new as of 2006. Charlie admitted that he was not up to date on all of the new laws, but still offered to take my case. We hoped that just having a lawyer 'on board' for the hearing would help us win. It did not.

This year, I handled the case on my own.

The only other options for legal services in this town are through a group that helps individuals with such cases as MA hearings, SSI, etc. HOWEVER, they are so overwhelmed it is impossible to get a lawyer to represent you. They are especially overwhelmed now that MA has added a hearing process that, in fact, probably does require clients to have a lawyer for every medication they are denied.

So, that is the answer to the question of finding a lawyer to handle my case. In the end, the questions we must really ask are: How much money is MA using to pay ALJs, doctors, nurse case managers, etc. to handle these drug appeals? Is it in any way cost effective? It seems with all of the money spent on staffing and handling these hearings MA could have, quite simply, paid for the drug I need and my doctors requested.

As I mentioned in my previous post on this topic I have spent the past year and half trying to find out what MA defined as 'a formal evaluation of sleep hygiene' without success. Today, I again encountered a nurse case worker who is supposedly on my side who did NOT know what this was.

Over the past two years, I have also spoken several times with a pharmacist in the Division of Pharmacy. After the first hearing, he suggested that my ANS specialist call him and write to him directly. My specialist did both--faxed a letter AND spoke to the pharmacist on the phone. I was still denied. The pharmacist assured me he would talk to the medical director and ask what more information was needed from my specialist.

Again, a denial.

During the July 16Th, 2007 hearing I was told that my specialist's information was NOT relevant and could not be used in my case because I had not seen him within the past year, despite the fact the he and I email and talk on the phone frequently. I have not travelled to see him because of the distance and the toll it will take on my physical well-being and this has been HIS decision. (Please note also that MA does not pay for me to see any of my out of state specialists.)

So, in other words, my doctor who has more on his plate than he has time to do, jumped through a bunch of hoops, made phone calls, wrote letters, and in the end was never told (and neither was I) that he was literally wasting his time because I had not seen him in person within the past year.

However, the law serves MA when and how they want it to. My ANS specialist wrote a letter requesting all of my maintenance medications not covered by MA. They approved all of them EXCEPT Ambien CR two years in a row.

What a waste of our doctors' precious time and energy. What a waste to dispose of their expertise in favor of a doctor who does not know my case. And most of all, what a waste of time that could be spent on what our doctors are meant to be doing: patient care.

Why am I so angry? Why do I break into tears just discussing this? Why can't I have a better supply of duck oil and just let this all roll off my back?

Because my parents and Davidson and The Friends School taught me to care. They taught me to care about others. They taught me that justice matters. They taught me to be an active citizen of our nation. They taught me to fight for those less fortunate than myself. Nobody should be treated without dignity and respect. Period.

I want to shrug my shoulders and say, "Well I guess my parents can pay for it." But I can't. And, it's just one more pile of financial guilt to carry, one more thing they pay for because I can't. No one on SSI with a chronic illness can live on their own: $650 a month and $31 in food stamps. Sadly, I'm making more money and am better insured than those living at what we consider poverty level in the United States. Aahh, but that's another topic for another day.

Toni suggested I seek out a drug assistance program. Well, since I can't physically take care of myself OR financially afford to live on my own, I live with my mom. This means that I am ineligible for such services because they are based on 'household income'. Again, I am left to be my parents burden. And given no power to become self-sufficient. If, God forbid, I am still sick when my parents die, they cannot even leave me their money without risking me losing health care coverage. And what insurance company would take me? Frankly, it's terrifying, and more than can be discussed in what I am supposed to be keeping to a post on Ambien.

Quite frankly, what this all boils down to is that I feel that I have been lied to, treated unfairly, and set up to fail.

I have a nurse case worker who doesn't know what the stipulations mean and she WORKS for MA. I have been told varying conditions by different people throughout MA (i.e. the pharmacist in the Division of Pharmacy vs. the doctors at the hearings). I have been promised (and flat out lied to) that I would receive written documentation of an evaluation of sleep hygiene. I have not even received the denial notice myself.

With each denial and each hearing MA ups the ante.

They keep changing the conditions I have to meet to receive this medication.

They keep adding more hurdles and hoops for me to go over and through.

The goal line keeps moving farther away...

I am so weary.

But, in the end, I know I will keep fighting because it's part of who I am.

I've been taught to fight the good fight.

And I will.

Disability does not discriminate.

I did not ask to be sick. I did not ask to be treated this way.

I speak for myself, and I believe for my DINET friends who are also very sick: we would give anything to be healthy, to be working, to be out in this world, to wake up and know what it feels like to not be sick and in pain.

If we can't have this, I ask that we at least be treated fairly, justly, and with respect.

I ask that Melissa, who fights every day just to LIVE, be granted SSDI or that Steph be granted Zofran for her Cyclic Vomiting Syndrome (CVS) so she doesn't waste away completely and end up on a feeding tube because Medicaid will not give her Zofran.

Is this too much to ask?

As a person who is chronically ill, I already fight simply to 'get through' each day--to get dressed, to put on my compression hose, to take a bath, to eat my meals. In between, if I'm lucky enough to have a 'good day', I'd like to spend my energy on something other than fighting for my basic medical needs. When I am at my sickest, I'm hoping and praying just to survive the day both emotionally and physically. I'm not able to be fighting for basic medical needs.

My focus, and that of every chronically ill person, needs to be on healing (or in the absence of healing, being given the best quality of life possible) and doing the best to create a life from what we have been given. Instead, most of us spend countless hours of our precious emotional and physical energy fighting insurance companies, doctors offices, lawyers, etc.

A DINET friend (I will be vague to protect her privacy) recently shared a success story with me about how she had kept fighting an unfair and unjust medical situation. In the end, she won. The agency was heavily fined and is now being carefully monitored for further violations. She fought for the same reasons that I am fighting. Thank you, my friend, for fighting and making a difference.

So, as you can see this, for me, is much, much bigger than a little blue pill...

Wishing you all, especially my DINET friends, a day when no one goes without services and medications they need,

Emily

To My Readers and Subscribers...

A HUGE AND HUMBLE THANKS FOR SUBSCRIBING TO AND READING MY BLOG!

I'm honestly completely overwhelmed and I want to thank you for taking the time to subscribe and read. I was most especially overwhelmed by the response to my Ambien post. WOW did this evoke emotions that I never anticipated.

I wish I had been out to take some pictures of the pretty flowers for this post. Maybe I will add one later. Like I'm sending you a flower for your efforts.

When Tess thanked me in her blog for my great effort...I thought, NOW it is my turn to THANK YOU for your great effort!

I am humbled, gratified and nourished by the act of writing itself and by the knowledge that my writing matters and is connecting me to those I love. Thank you.

An important note to subscribers:

My friend, Sarah, was here visiting this weekend (blog to follow at some point of course...I'm waaaaaaaaay behind). She noted that when you receive the email notification from Feedburner there is not a 'link' to go directly to my blog.

This has also created problems for those wanting to leave comments, rather than send an email.

As it turns out, after a bit of experimenting, you CAN link directly to my blog from the email. At the top of the email you receive it will say 'Dancing Light's Studio Notes' in BLUE and be underlined. Simply 'click' here and it will take you directly to my blog where you can leave a comment.

Also, at the very bottom of the email from Feedburner in fine print (and also in blue) it says Dancing Light's Studio Notes (prefaced by You are subscribed to or something like that) and you can also click here to go to the blog.

Many of you attempted to leave comments or had trouble getting to the blog, and hit 'reply' to the topic so I received your emails. I pasted them all into the 'comments' section on Ambien. IF any of you do not feel comfortable with what you wrote being posted on my blog, please let me know and I will remove it. I posted them because I was so moved by the common passion you all shared.

Lastly, for those of you struggling to leave a comment (j, we'll try to get you to post in the right place this time around. lol): At the bottom of each post it says in teeny tiny print (or larger print if you've linked from Feedburner) either 'Comments' or 'Post a comment'.

Click here.

Then, a section will come up to post a comment.

Write your comment.

You will be asked to choose an identity (if you don't have a google account). Choose either 'Other' or 'Anonymous'. If you choose 'Other', you can enter in your first name.

Then, click on the box that says, 'Publish Comment'.

You will then be asked to type in a 'security' code of goofy letters and numbers. Do this, and then you hit whatever it says (I forget right now).

And, VOILA you're comment has been published for all to see! And you will be so proud of yourself!

Again, mucho thanks for reading and responding. I'm overwhelmed by your kindness, passion, and support.

Also, please remember that the topics will vary a LOT in frequency and what you might be interested in....so just ignore the ones in which you are not interested. I'm a bit 'Blogger Happy' right now as my friend, Marla, says. I'm trying to hold back and not overwhelm you and end up with everyone 'unsubscribing'! It's like the floodgates have opened after all this time waiting to get back to writing again.

Blessings,

Emily

Photo: Flowers for you! I got out today (July 20th) to take some pictures around the yard, so now this entry is complete with photo and flowers! :)

Ambien Hearing: A Fight for Something Bigger

I'm so chaotic in the head at the moment, I'm not sure I can form a coherent post. However, I want to try because the feelings are so raw NOW. I'm emotionally and physically exhausted from today's experience: another that is common in the world of chronic illness.

I honestly want to use the F-word and the A-word right now, but I realize this might offend a significant number of my subscribers, so I have said them out loud only to the walls of this house, my mother and Asher! (Yes, I can be a potty mouth at times, although I try not to be!)

Today I had a 'hearing' with an Administrative Law Judge through the Department of Public Welfare because I disagreed with the denial of a medication I take regularly, Ambien CR.

A quick catch up for those not familiar with the logistics of my situation. I receive Supplemental Security Income (SSI) and Medical Assistance (MA). I do not receive Social Security Disability (SSDI) and Medicare because I did not 'pay into the system' before I got sick.

I have been taking Ambien for eight years now (other than a few trials off of it to see if we could find a better substitute). I have worked with psychiatrists, psychiatric nurse practitioners, my primary care physician, and various specialists in ANS dysfunction and Chronic Fatigue Syndrome over the years and ALL have agreed that Ambien is the best available medication for me. We have continuously discussed the risks and benefits of using this medication long-term. At this point, given my health conditions, we are doing the best we can to treat both the symptoms and the underlying causes of my illness (probably Lyme disease). In my mind there is irrefutable evidence that Ambien is medically necessary.

However for more than a year and half, MA has refused to pay for Ambien or Ambien CR. They have continued to issue denials despite letters from my primary care doctor, my ANS specialist (who is one of the top ones in the country) and myself, documenting my need for this medication and the complicated aspects of my illness. At four bucks a pill this is a chunk of change.

My mom and I have invested endless hours into writing letters, finding research, listing all of the medications I have tried since becoming ill (over 60), etc. It is emotionally and physically exhausting. Both of my parents get the post-hearing crying and sadness.

I have continued to appeal the case over and over, and this was my second hearing, this time under a 'new claim'.

The hearing is set up as follows:

People present on the phone: myself, Administrative Law Judge, a consulting doctor (paid by MA--not a 'neutral' source).

Documents/Exhibits: letters from my ANS doc requesting Ambien CR and why; original clinic notes from appt. with ANS specialist; letter from myself explaining in detail why I need this drug, quoting research on sleep and ANS dysfunction, a list of all medications tried over the past nine years (including those MA considers 'substitutes), etc.; pages and pages explaining MA's formularies and rules for getting a medication; and my very favorite exhibit--a PubMed search done by the doctor for ambien/orthostatic intolerance and ambien/chronic fatigue syndrome showing that there are no clinical studies on these (duh!).

Hearing process:

1. Doctor gives his arguments. Goes document by document explaining why all of the information I have submitted is not valid. Explains how definitive his PubMed search has been and how thorough he has been. Explains over and over again that this drug is not medically necessary and I need a 'formal assessment of sleep hygiene'.

2. I am given time to give my 'counter arguments'. Please note that the doctor had all documents in his possession before the hearing and was able to form his arguments in advance. He talked for over 30 minutes, very quickly and in medical jargon. I scrambled to take notes and keep up.

I have no time to 'digest' or form my arguments. Must give them on the spot. I try to go back through document by document with counterpoints to everything that he has said. HOWEVER, when he gave his original arguments I was permitted to only listen. When I gave my counter arguments, he was permitted to counter argue each one. Note also that my counter arguments were often cut off by the Judge as 'irrelavent to the case' even though I was only going point by point on the same topics the doctor had addressed. So, her head was already filled with 'his information' but my 'facts and opinions' were not fully allowed as evidence.

3. Doctor gives his 'testimony'

4. I give my 'testimony' (I am NOT a lawyer and have no clue how to do this!)

5. I give closing arguments.

6. Doctor gets 'last words' and gives his closing arguments.

I am entitled to a fair hearing? If this is a fair hearing, this is a sad statement on our justice system (which, yes, I know is already screwed up).

7. We are now 'off-record' and doctor asks me in condescending tone if I would like a nurse case worker to 'help me' better understand things.

I realize that these people are paid to help me lose. The doctor was condescending, arrogant, rude and hostile.

A few 'highlights' from the hearing include (his idiotic statements are far too many to type out or make you read!):

He was quite proud of his PubMed search, which I noted, had he broadened his search to 'sleep' and these disorders he would have found literature. To this he, of course, became insulted and explained that he certainly had the skills to do a well-thought out search on PubMed. Even I learned in undergrad that you must try a zillion combinations when searching for something obscure.

He also had NOT read the clinic notes from my first visit with my ANS specialist. These documented my sleep habits, bedding, meditation practices, diet, exercise, etc. (all in his list of requirements for an assessment of sleep hygiene). After pointing these out, he admitted 'because he was under oath' that he had not read the letter in full before the hearing and that now that I made those points I 'probably' met 7/11 criteria for having been evaluated for sleep hygiene.

Please note that I have called MA, our local county assistance office, and other phone numbers multiple times over the past year requesting a definition of a 'formal assessment of sleep hygiene' and have never received an answer.

If, what they need to approve Ambien CR is, in fact, a documentation of sleep hygiene why can't they do one of the following: 1. Send me a form with the list of items/questions for my doctor to fill out and sign, or 2. Have the doctor on the telephone during the hearing process ask me right there the 11 points of sleep hygiene? (I am under oath) The questions are ridiculously simple and obvious--such as do you drink caffeine? Or alcohol? Or do you exercise right before bed? Do you do a quiet activity before bed? (The doctor finally 'revealed' to me what a definition of sleep hygiene actually was, after prompted by the Judge. He expressed disgust that not all doctors knew what the 11 points of sleep hygiene were. So, if it's so readily available and so publicized...well, don't make it so hard for your clients to get!

Aaaaah, but that would be way too simple and make way too much sense AND make it too easy to get Ambien, which they just don't want to pay for!

Most disturbing, and frankly sad, is that he dismissed all of the letters from my specialist. He kept referring to my 'alleged' diagnosis--as if it wasn't really confirmed or real. He also noted that since 2004 (the original clinic notes) and 2007 (a specific letter from my ANS specialist requesting Ambien) 'suddenly the perceived diagnosis had changed, as if I could not have evolving medical issues or newly discovered conditions in addition to ANS dysfunction and CFS.

He kept telling me that I needed to see a sleep specialist to determine the underlying cause of my sleep problems. I tried multiple times to explain that my illnesses ARE the cause of my sleep problems. This is well-documented. If I went to a sleep specialist he would not know diddly-squat about ANS disorders (as I am sure this doctor did not either).

Both this doctor and last year's doctor seem convinced that all chronic sleep problems are a manifestation of depression. Why then is there not a parallel here? Sleep problems are a manifestation of Lyme, CFS and ANS disorders.

Why does a doctor who does not know my case and who does not know the complexities of this illness get to trump the requests of my treating physicians? Why does he trump the experts? How does he get to dismiss every letter as 'circular reasoning' or 'historic' or 'not relevant' or only 'somewhat relevant'?

My doctors are the best of the best. Wouldn't they send me to a sleep specialist if they felt I needed it? Wouldn't they stop prescribing Ambien if it weren't medically necessary? And haven't we, by now, discussed the ins and outs of sleep hygiene enough? I can practice good sleep hygiene from now until the cows come home and it ain't gonna give me a good night's sleep. I still do it, but it's just not that simple doc.

I'm an optimist. But, I will lose this case. The nuances in the law make it so that, although the Administrative Law Judge seemed sympathetic to my case, she cannot approve this medication.

I continue to fight because I can. But I'm growing incredibly weary of fighting for this one medication when I have bigger battles to fight.



I fight for those who cannot fight.


I fight for those who are not as fortunate as I am.


If we have to, my parents can pay for this medication. However, they already pay not only all of my living expenses but for countless things already uncovered by MA--compression garments which go for a hefty price, and trips to specialists out of state, which MA does not pay for, etc.
Without these specialists I would not be anywhere on the path towards healing.


I also fight because I have the resources and the education to fight. If we are being honest, the majority of people on medical assistance are poor and uneducated. I have a solid college education, but no higher education. Still, I can navigate through medical jargon fairly well and articulate my condition well.


The papers that arrive regarding the hearings and denials and appeals are in such legal jargon that even my parents, who both have PhDs, cannot make sense of them. What does a person with little to no education and no money do in such a situation? MA does not pay for medical records that you might need for a hearing. Nor do they pay if you choose to take your case to the commonwealth court.


I'm fighting more than just my own fight. I'm fighting for those who desperately need medications and cannot get them no matter what. I can still sleep at night because someone in my family can pay for a the medication I need to help me sleep.


The entire process is a sad statement on the state of health care and how we treat people with disabilities. I wish I could remember which president said it and how he phrased it, but basically, he felt that a society's strength was based on how well it treated those who needed help the most, particularly those with disabilities. Oh how we are failing.


Right now on capitol hill, former employees of insurance companies are testifying about how, in order to keep their jobs, they had to deny life-saving medications and medical procedures. This made them absolutely heartsick.


Before the hearing I consulted my dad (wannabe lawyer) and asked him how to approach the hearing. He said the best thing I could do was cry and pull out the emotional stuff! I didn't need to fake this. After being sufficiently attacked by the doctor's initial statements, I cried through the rest of my arguments and testimony. And the rest of the afternoon.


I want to not care. I want to stay emotionally detached. But it is impossible when I listen to a doctor talk about me in the ways this doctor did.


Today I 'learned' that after all these years, and all these doctors, and all of these medications I have tried Ambien is not medically necessary and I need a formal assessment of sleep hygiene (just in case you or I missed those specifics repeated five hundred times in the one hour and thirty minute hearing). Still, even after a day of feeling heartsick--and enough stress to set off an ANS 'storm' as a fellow DINET member calls it--I'm one of the lucky ones. I can still take an Ambien tonight and pray for sleep to come. And I'll still be able to get more of those little blue pills even if MA denies me again and again and again.


For those who aren't so fortunate, may a day soon come when you receive what is just and fair and right for your illness. For the doctors who care for us, may a day soon come when your opinions trump the insurance companies. And may the day come when YOU choose what is best for YOUR patients. Most of all, may the day soon come when NO one goes without health care, vital medical procedures, and medications.


And for all of us, may a day soon come when we treat people with disabilities like HUMAN BEINGS.


Blessings,


Emily


Subscribers reading in email, link to blog provided here: http://www.adancinglight.blogspot.com/

A 'Vantastick' Close to My Davidson Summer

I can't believe almost a month has passed since Carrie and Sam were here for a whirlwind visit from June 24Th to June 25Th (I think they were here just over 24 hours, but we sure packed in a LOT during that visit!)



What a VANTASTICK conclusion to my Davidson summer! (Vantastick is a play off of their last name, so they call themselves the Vantasticks--which, they are of course, fantastic!). The visit, again, exceeded any expectations I could have had (I have learned from my great spiritual teacher, Maxine, not to 'set expectations' anymore because this way I am not disappointed if it doesn't turn out the way I 'expected').



First, when they left I felt so emotionally and spiritually full. Second, I was able to pack in an unbelievable amount of visiting time that I could not have done even a few months ago. We stayed up until 11:30--at which point Carrie was the one falling asleep! I was in high gear because my ANS was keeping me awake with shakes and sweats, but I was still trooping along. Carrie has visited me many, many times since I have been sick (I've been soooo spoiled by this), so she has seen the absolute worst and everything in between. She even observed how joyful she felt over the difference in how I fared during their visit this year as compared to this time last year when they visited.



Upon arrival Carrie and Sam promptly settled into their B and B room for a nap. When I woke up at my usual 1:00 pm time, they were still sleeping. Carrie had pushed to get on the road early in the morning so that she wouldn't miss a moment of my awake time. My mom said, "They're still sleeping." and I said, "Wake them up!!!". So, I knocked on the wall between our two rooms and Carrie came right into my room.

She immediately crawled right next to me on the bed and we hugged, stroked each other's hair, and just enjoyed being in one another's presence. We immediately connected and fell right back into being together. The whole visit felt this amazingly intimate, wonderful and affirming.

I've only known Sam a short time--as this was only my second visit with him--but he too is the easiest and most pleasant person to have around. As you can see above, Carrie and Sam were 'in charge' of dinner. Mom had made Paella in advance, but Carrie and Sam made salad, and got everything else set up for dinner. They even load and unload the dishwasher when they are here!

During her visits, Carrie has always seamlessly adapted and accommodated to my schedule, willingly done any household chores, or taken care of anything I needed done without complaint and without ever seeming as if it is in any way a burden. The first time I met Sam, the two of them came into my bedroom where I was resting, and sat right down next to the bed (me in PJs, with morning breath and looking perfectly ghastly!) as if it was perfectly normal for them both. I really think being able to do this for a sick friend is such an incredible art on their part, and such a wonderful gift to receive.

We filled our whole day with real and genuine conversations. I was still in a not-so-great place emotionally and spiritually (still reeling from that 'ol anniversary) when they were here. Both listened to me so carefully and helped me process. I was still struggling with the issues I raised with Angela, and how to take back control of my life.

I'm typically not super comfortable around men, but Sam makes it a breeze. He also helps bring in a different perspective. I struggle a lot wondering if I did feel well enough to date or marry if anyone would see who I am other than this illness. My girlfriends can tell me from now until the cows come home that they believe in me and that someone will love me for who I am--but it does help to have someone like Sam (who is a great guy and the husband of my best friend from college) give his two cents. He reminds me that great guys are out there, and so are great marriages--and I'll just be counting on Sam and Carrie as my matchmakers when the time is right! Okay, now, girls, your opinions DO matter and Sam's doesn't trump all your kind words! :)

Sam and Carrie have had a whirlwind year so we had a lot of catching up to do, as Carrie and I have not had a lot of our usual 'phone time' since she graduated from her MFA program at Yale, they got married, moved to a new city, and started new jobs all at the same time! For me, it's been a hard adjustment getting used to the decreased frequency of our long phone calls and emails. With each friend that starts a career or gets married or adds a child (or another child) to their family, the ability to keep in touch is naturally and realistically altered. With each friend, I struggle to find where I fit into her life and how to best be a friend without being a burden.

Carrie and I have reached a maturity in our relationship now that we can truthfully talk through this hard 'stuff' of life, and the three of us were able to discuss this new change in our relationship openly.

Although Carrie and I might not be able to be in touch as frequently now as we used to be, what her visits always confirm is that 1. she makes an INCREDIBLE effort to make time for me, and 2. when she is here (or able to talk on the phone) she is FULLY PRESENT with me, in the moment, and enjoying being here. These are true gifts. Travelling here is quite a journey for her and Sam. And she assures me that I WILL see her once a year--and that, in and of itself, demonstrates her commitment to this friendship.



Carrie and I met at Davidson on move-in day. We were freshman hall mates, Davidson dance troupe co-directors, and roommates for 1 1/2 years. Freshman year we were often mistaken for twins on our way to the dining hall together (often dressed in our matching jean overalls). Honestly, I don't think either one of us can figure out HOW anyone could think we were twins???!!!! But we certainly have been connected in a deep way for almost 14 years.

The two of us have had our share of struggles and ups and downs in our friendship. Sometimes one or both of us thought we might lose each other. I don't know why we struggled so, but we look back and know it was part of 'growing up'. I suppose any two people who spend so much time together--living together, directing dance troupe together--and under the stress of Davidson are bound to encounter conflict.

Last year, when she asked me to be her maid of honor in her wedding, I was so moved. I knew that we were friends for life, no matter what. I knew Carrie wasn't going anywhere. And Carrie shows me that over and over again. Having her and Sam here is heaven.

As our day together drew to a close we walked into Carrie and Sam's room, where I layed on the bed and they promptly fell onto the bed also. The three of us (with Carrie in the middle) just layed there on our backs and enjoyed a few last moments in each other's presence. However, as we peacefully tried to enjoy this moment Asher found Sam and Carrie's bare toes irresistible! Then, he pounced on the bed with us and we ended the night in hysterics. (Sam, where are those pictures you promised that you took of Asher demonstrating his foot fetish!?)

I was able to get up the next day at lunch time, throw on some hose and clothes, squeeze in a few more moments with them and a few more hugs to top off a perfect visit. I had asked sheepishly the night before if I would see them again, and Carrie assured me that I would see them next year. So, as we hugged goodbye and I watched them pull out of the driveway, I held closely to those words', "We'll see you next year!"

So, Carrie, I thank you for sticking it out with me. For getting through those crazy college years. For committing yourself to this friendship. For taking time out of your hectic schedule to travel all this way. And Sam, I thank you for making Carrie so incredibly happy, for helping Carrie and I to nurture our friendship by travelling here, and now, for becoming my friend too.

After Carrie and Sam left, just as after Angela left, my heart was full. And my foggy mirror continued to clear. (Boy, if only we could use a 'defrost' button like in cars and not have to do all this emotional work, life would be so much easier!). The hardest part after Carrie leaves is that I just miss her MORE. In just 24 hours I get used to having her around, like having her as a roommate in college!

As always, thank you for the blessing of your visit. I can't wait to see you next year! You're VANTASTICK!

Lots of love,

Emily


Photos: Hanging out under the maple tree. Sam enjoying being surrounded on either side by two beautiful women (haha!) No worries, he only has eyes for his wife! :); Carrie and Sam getting dinner ready when I woke up from my nap; All of us under the maple tree again--even though it's not as 'flattering' because it's less 'posed', we're all laughing and my eyes are all squished up, I love this picture because it shows how much joy we were all truly feeling to be together.

Angela Zips in from NYC!

Just as Loralea departed, Angela called to say, "Hey Em, I'm making a last minute trip home for Father's Day weekend! I know your pooped from all your visitors--and I wish that I could space them out for you more--but if you're up for a visit, I'd love to see you." At the time Ang called I was feeling pretty 'down and out' about life in general as I neared my nine year anniversary. I told Ang I'd love to see her, but I wasn't sure she'd want to put up with me! She said not to worry about my state of mind, she wanted to see me anyways.

I share this exchange because it is so 'classic Angela'--always loving, always considerate, always faithful, always loyal, always honest, always catching me when I fall, always genuine, always a great listener and problem solver, and always, always going above and beyond to make time for me.

If she has a lunch time when she has time to chat, she'll call me because she knows it's my 'awake time' of the day. When she is in town for a visit with her family, she plans her time to be here when she knows I can be awake and always squeezes in time for me. Honestly, with her busy NYC style life, she never ceases to amaze me. I never fall off her radar.

I know she's reading this blog and, in typical Ang fashion, completely NOT taking in these compliments. I'm the mush of the two of us. I'm the one who loves to say "I love you", she's the one who demonstrates her love through actions--her calls, her emails, her visits.

Angela and I have been friends since fourth grade. Our friendship is my 'oldest' in years. Never, in our entire friendship, can I remember a rift worth, well, remembering. Of course we had petty things I'm sure--we were teenagers once upon a time (and teenage girls are the worst!). Our friendship has remained, no matter how long we may go between seeing each other or getting to talk on the phone, stable and constant.

When I first got sick, I remember Angela feeling scared as to how it might change our friendship. What would we 'do'? Now we could just hang out and talk. (I don't know why she had any doubts...we spent our teenage years with our ears attached to the phone and forcing ourselves to get off of the phone by counting to three and making ourselves hang up! Haha!)

Honestly, we've just grown closer. Angela taught me that friends who are the same at the 'core' will remain friends as the other layers peel away. With other people, we may start out as 'great friends' but as the layers peel away, the friendship doesn't make it. Well, we've peeled away the layers, and we still love each other. What started out as doing every single school project possible together, homework over the phone, and playing at each others' houses has grown into an adult friendship that is so precious and so rare.

How many friends do we keep for such a long time? How many friends do we find who love us since we are so young? How many friends do we find who no matter the distance between us, no matter the life circumstances, they are always there?

Angela's visit began a real turning point for me emotionally and spiritually. At the time she arrived we were both struggling in our own ways, but on a basic level we both felt, as she taught me 'too chaotic in the head' (a Buddhist saying her mother had just taught her). Ang and I are both out-loud processors (and over-analyzers of everything!) and we fall right into helping each other process whatever is going on the second we see each other. As much as we still love to talk on the phone, when we see each other in person the visit is beyond amazing!

I was struggling with a failing friendship, a feeling of failure at relationships, the intangible process of chronic illness and healing, my feelings that I can't ever keep up with what I want to, and my lack of tangible things in my life that nourish me. I was also, quite plainly, sad and in pain over the losses and grief I felt relating to another anniversary. I was definitely feeling like Little Miss Grumbolina!

She's essentially grown up in this house, as I've lived here since I was nine months old, so she helps herself to water and hanging up her coat and making herself comfy. And we dig in to the hard stuff of life.

I don't have to filter for Ang. I don't have to be anyone other than me. Even if that's a 'me' that's struggling to find my way. After I posted about my nine year anniversary (soon after her visit) she emailed me to remind me that sick or not, she was going to be there alongside me.

She wrote: "It has been hard traveling this journey over the last 9 years alongside you. But, it has only been hard from a friend's perspective because I can't do anything to make you better. You always amaze me with your presence and energy when you are able to share it and your insight and perspective. I hope you are nearing the end of having to acknowledge 'getting sick' anniversaries and we can celebrate other things together instead. But, regardless of what is to come, you know I'll still be hanging around."

The power of such words from those I love the most is overwhelming when experiencing a dark night of the soul.

She taught me a Chinese idiom that day she visited. It related to the idea that our heads can get too chaotic, and when they do it is like we are looking through a fogged up mirror. When we give ourselves time and have the space to gain perspective, the mirror begins to clear.

That day, the mirror did begin to clear. And it has been clearing ever since.

Thanks Ang, for the perfect timing of your visit, for another great phone visit on Monday this week, and for the gift of YOU in my life.

Much love,

Em

Photo: Ang (in her jeans because "no one wears shorts in the city"! I told her she wasn't in the city now!) and me (too bad I didn't have my new 'do' yet, so I could have looked more NYC stylish too!)

A Trip to the Beauty Shop!!!

Today I made my first journey outside of the house for something other than a doctor's appointment in over two and a half years!

I got my first professional haircut at a beauty shop since the fall of 2004! I have been so excited about this I haven't been able to stop talking about it!

Other than a 'real haircut' by my Aunt Jeanette (who is actually trained as a beautician), my mom has been cutting my hair. She's been doing a pretty good job (considering she is certainly NOT trained in this arena!) and she's certainly been saving me a LOT of money! HOLY COW was I in for sticker shock after paying for the haircut, tip, and some 'goop' with which to scrunch up my new layers.

Judy (the hairdresser) says my layers are quite 'in style' right now. So, even though I still never really leave the house, I can at least be in style for my visitors! And, I'm sure Asher will appreciate it. Haha!

It's amazing what a lift something so simple as a haircut can provide. I swear I should go to the beauty shop more often just for the ego boost! (Oooh, you have such beautiful hair! Oooh, you look fantastic! Oooh, you don't look 31 you look 20! Oooh, you look great!) Geez! We all need that everyone once in a while!

So, that's my big news of the day! I am just so excited about this milestone. I feel like I am beginning to really see new progress in my healing and I am just thrilled. The tortoise is out of her shell, and starting to crawl forward!

Hopefully I can re-create this look at home with little to no maintenance! I shower at night, and just spritz my hair with water in the afternoon when I wake up. So, I should be able to take advantage of my natural curl, spritz, put in goop, scrunch, let air dry and be set for the day. After nap: scrunch again! I never spend more than about two minutes on my hair!

Now, it is definitely time for a nap! But, I'm just soooo happy and excited!!!

Blessings,

Emily