Wrapping Up 2007: In Pictures

"The key is to keep company only with people who uplift you, whose presence calls forth your best."

--Epictetus--

And so it seems the highlights of each year are the times spent with those I care about. Visitors are an extra-special treat, a time to feel as if I'm part of the outside world, a time to feel a bit 'normal' even if just for an hour. Visitors exhaust and exhilarate me all at the same time, but I'll never stop wanting to see people, even if it tires me out. After all those years of being known as a social butterfly, you just can't take that out of me! As you've seen throughout my blogs this year, I've been blessed with many wonderful visitors. I truly believe that the people in my life keep me going and giving each day another shot.



Here's the rest of the visitors of 2007 in pictures. I missed a couple of summer visitors in earlier blogs, so those folks finally get their due here! The rest of the visitors topped off the end of 2007 as they poured in during December. (It seems to be feast or famine since folks are home either in the summers or in the winter over the holiday!)

We have such a dear neighbor in Barbara. She 'gets' pain and suffering, as she has been through so much herself which makes being with her so easy--and no 'filtering' required. We considered it a major milestone this August when Barbara came over to our house for DINNER! We have not had a dinner guest in a very, very long time and what a perfect guest to start with!

Meet Tess, writer extraordinaire! (Her blog, Arch Words, is listed on the right side of my blog, and she is the one who wrote the moving response to my nine year anniversary post on her blog.) Tess and I knew each other in high school, and while we both liked each other we were never close. At our 10 year high school reunion in 2004, we reconnected and this year I got to visit with her. It was a wonderful treat.



At our reunion, I was left with the awful question of how to answer inquiries such as "How are you?" and "What do you do?" Oh, how I hate the "What do you do?" question. What I found was that being authentic mattered most, and when I told Tess that I was sick she looked in my eyes with such concern and said, "Will you be okay?" I remember telling her, "I don't know". The impact of that simple act of kindness stuck with me all these years, and I was so excited to reconnect with her this summer. I also never have forgotten the look of concern in her eyes.



We had fun catching up on the 'gossip' (and realizing that we had both dated the same guy and never knew it--and he gave us a lot of material to laugh about!) and also talking about the 'real' stuff. Tess is even thinking about going into Sociology, so she has been in touch with both of my parents about pursuing a degree. I am always fascinated and amazed by timing--that we reconnected when we did, that we had so much in common, and that she was thinking about going into Sociology and didn't know both of my parents were Sociologists. I do hope we will get to visit again one day when she makes it back to town. In a way, seeing her and getting along so well, made me wish that we had been better friends all along--rather than making our first significant connection at a party senior year of high school right before we all parted ways for college.

Meet my cousin Jan! (Well, actually she's married to my cousin, Mike, but I consider spouses cousins too! The more the merrier, since my dad's family is HUGE!).

Jan was in town for a conference in July and stopped over for an afternoon visit. She brought pictures of her family (four kids!), and we marvelled at how long it has been since we had seen each other. I can't believe she has a 15 year old son!

It's such a rare treat to see family members from either side of my family, because they all live so far away.

Ah, yes, Tupperware never gets old to children of any generation. I think I played with these same Tupperware containers when I was growing up! When Ted, Erin, and Aislinn came for a visit this was the best we could do in the 'toy department', but Aislinn didn't seem to mind. I love this picture with them all wearing 'hats.'



Ted (high school friend), Erin and Aislinn were my first visitors of the holiday season. I have to admit that I was exhausted after an hour an a half with a one and a half year old! I need to work on my stamina! :)




Why is it that you can never catch the moment you want on camera? Aislinn is full of smiles, but I never seemed to be able to catch her looking in to the camera (perhaps a faster shutter speed would help this remedy this problem?).




Hi Aislinn! I got a wave for the camera!





Aislinn LOVES her belly button. Ask her where her belly button is and she lifts up her shirt and shows you. I'm really laughing at how this will play out as she gets older. Will she be into showing off her midriff all of the time? Anyways, Erin caught this shot of me and Aislinn playing 'Where's your belly button?' She liked finding mine underneath all of my compression garments!



As always, it was great to see Ted and family--and I am enjoying getting to see Aislinn as she grows up.



As many of you know, I was feeling pretty crummy through most of December and I wasn't able to enjoy visitors as much as I would have hoped. It was often a struggle to get through the visits, and that made me really sad. I hadn't yet managed to straighten out the Lyme treatment and get back to a baseline. So, I'm often looking fairly peaked in many of the pictures!











Aren't we cute? I love this picture of me and Erika. Erika was a caregiver for one semester, but we became very close very fast. I tease her that she is so much younger than me and we are such good friends.



Erika stayed for an overnight and we had such a wonderful visit!!! I can't say enough good things about the connection we have with each other. She also really went out of her way to come to town for a visit.



Erika LOVES Asher, and Asher LOVES her! Erika and I have done a lot of talking and praying about whether or not someday she may adopt Asher. Erika knows that I do not want to give up Asher for adoption unless it is to her or another friend. We are just waiting for time and circumstance to tell us what is best for all involved.

Erika brought Asher a toy monkey, which is now his new favorite toy. He is so spoiled! She said she brought "A monkey for the monkey."

I think they look like they go together! :)

Thanks Erika for the fantabulous visit. It was just what my spirit needed.

Meet Celeste! You've all heard me talk about her, but I've never posted a picture. Here's Celeste on her last day with us. She has been my caregiver for the past year and a half--the longest any caregiver has been with us (because of the transient student population).

This is a classic picture of Celeste. She does every job with a smile, she loves coming to work, and she doesn't mind WHAT in the world I ask her to do. She's put all my CDs on iTunes, alphabetized them all, labeled them all with a label maker, organized all of my drawers in my bedroom and so much more! Plus she's a master at pill packs. She is currently living at home until she starts grad school in the fall, so she is going to try to come to town about once a month this winter just to do pill packs and any other jobs I might like done! (My mom hates doing pill packs, so the longer she doesn't have to do them, the better!)

Since Celeste is still coming about once a month, it doesn't quite feel like goodbye, but I really, really miss seeing her every week. She's been a top notch caregiver.

Sarah, Bob and Buffy visited for an afternoon the weekend before Christmas. Buffy is dressed as Miss Santa! And Sarah brought Asher Hannukah toys! I didn't know they made such things--but believe it or not they make dreidls and menorahs with squeakers. Asher thinks they are pretty cool. Buffy really wanted out of her Santa suit!

I am so excited to have found jeans that I can wear! And that I am dressed in something other than a sweatsuit! Hurray for baby steps! I had no idea such a thing as comfortable jeans existed!







I love this picture of me and Angela, both dressed in brown. She even commented on the fact that I was wearing 'real clothes' rather than a sweatsuit. She's always dressed like a New Yorker--stylish to the max!





As always, Ang and I had a great visit. We don't get to catch up often so when we do we have a lot to pack in! It was weird to hear her say that I may not see her until this time again next year--after she gets married. I hate that I have missed and continue to miss all of my friends' weddings.

Here are new faces I haven't posted on my blog before: Caroline and her husband, Tom.
Caroline is also a high school friend--with whom I spent a lot of time, especially on a group trip to Europe, plugging away at the high school yearbook, and marching our hearts in band.

Caroline is a sweet, gentle soul who always asks in her emails if there is anything she can do for me. Since she works with computers I told her to design a computer for a woman, by a woman that does not make me want to throw it out the window (as I do most days now)! She said she was game.

I haven't seen Caroline since college graduation, other than at our reunion, so it was great to reconnect with her also.

I consider Caroline responsible for allowing me to reconnect with so many high school friends this year. At the last minute our student government president bowed out of planning our ten year high school reunion and Caroline took over the monumental task of locating and contacting class members as well as planning and executing the reunion. Being able to go to the reunion was the biggest thing I have done since getting sick and was the 'last big thing' before the you-know-what hit the fan in 2005. Bravo and thanks to Caroline!

I'm not sure why this was 'the year' for seeing so many old friends from high school--the ones I see on a regular basis plus a cluster of folks I haven't seen in a long time--but it was quite amazing to see so many folks and to see them doing well.

An angel to watch over me...

Dad and Abbie put on their glasses and check out what's in that box: Planet Earth on DVD! Just in time to watch on their new TV and DVD player (finally they've upgraded from VHS!) And, yes, I picked this out BEFORE Oprah picked it as one of her favorite things!

We opened gifts the day after Christmas. Here's a nice family portrait! Except that Abbie HATES having her picture taken. My Dad, on the other hand, is always ready to pose for the camera!

Awwww, such a nice shot of father and daughter...

Fluffer nutters on New Years Day. YUM! Don't know what a fluffer nutter is? Well, you're seriously missing out. It's a peanut butter and marshmallow creme sandwich. And excellent food choice over pork and sauerkraut (Yuck!). Miss Alexandra describes marshmallow creme as 'edible glue'! She says such hilarious things.

Miss Alexandra came over New Years Day for lunch and we had lots of fun together, including having her 'do my hair' with lots of pony tail holders and barrettes. Alexandra finally cleaned her room, so she was allowed to come over for a 'play date'! She inspected my room and proudly declared that her room was much cleaner than mine.

It was a great way to start the new year. I'm wearing a vest that Anne knitted for me--isn't it cute!? I wish I could knit that well!

Happy New Year hugs from my favorite little snuggle-wogle (that's what she calls us--snuggle-wogles). This little girl brightens my world in ways she will never know. She is such a bright little spirit in this world and I love having a child in my life to spend time with. In fact, I love having her whole family in my life. Of late, I'm so proud that I can walk over the their house, that I've taken to just showing up and surprising them. Asher pulls like crazy to go to their house!

Well, that's all folks! Phew, right? This blog turned out much longer than I had planned (Surprise, Surprise).

Looking at these pictures and thinking back to all of the other visitors who came this year, brought me some much needed joy over the past few days while I worked on this blog.

Thank you to all of you who make the extra effort to visit!

And I can't wait to see many of you again in 2008.

So far our B and B is booking up bit by bit, including two 'new' visitors--"Mommy Bev" and Britt--and one very old favorite, Carrie.

Blessings,

Emily

APPROVED! Lyrica Follow-up

On Monday morning I received an email from Dr. ANS stating the following:

Emily: OK, here's good news from the pharmacy to start off the week:

the Lyrica authorization number is ----------.

So, it is approved for 1 year! Score one for the team. Dr. ANS



Today, I received the official letter in the mail from the Department of Public Welfare stating that I am APPROVED for 1080 Lyrica capsules! 90 pills a month for a whole year! I swear I feel like framing the darned paper.

I was also rather easily, for a change, approved for my Corgard and Allegra for another year.

I promised I would keep you all updated on my fight for medications. Medical Assistance insists that they will not approve medications based on a request from a doctor whom I have not seen in the past year. Yet, Dr. ANS wrote a new letter, it went to a different medical director, and it was approved. When did getting medications and our health become a game? After all that pain with Dr. Pain (the doctor who should have written the request in the first place) Dr. ANS saved the day again.



On a low note the NY Times published a front page article on Monday morning--the same day my authorization for Lyrica went through--questioning whether Fibromyalgia is a real illness and whether or not Pfizer, the drug company who makes Lyrica, was simply trying to make money off of a 'fake illness'. A disheartening article out there for all of us suffering from inexplicable illnesses, not to mention the fact that the article was poorly written and researched. Thankfully, they received countless editorials slamming the article.



It's nice having four illnesses that most of the medical community doesn't believe in (Chronic Lyme, ANS dysfunction, Chronic Fatigue Syndrome and Fibromyalgia). As if I want to feel this way and miss out on the 'good stuff' of life. Good grief!



I quickly called the pharmacy with my authorization number for Lyrica just in case Medical Assistance changed its mind and decided not to approve Lyrica anymore since Fibromyalgia isn't real! We had to use a diagnosis of Fibromyalgia to get the medication (and by all standards this was not a lie since I meet the criteria anyways) since Lyrica is now FDA approved for this illness.



In this case, persistance did pay off. And a big sigh of relief for Dad and Abbie who no longer have to pay out of pocket for the Lyrica. Next step: Ambien



I'm happy to report that today was the best day I have had in about three months. I have had very little pain and more energy than I can remember since October. It's thrilling. I don't know if it is the increased dose of Lyrica, but I sure am hoping so because I could really use an emotional and physical boost these days. (You may have noticed I've fallen silent in the blogging department of late? You know something's wrong when I stop talking a lot!).



Score one for the team!



Emily

Oprah Update: An Unanticipated Journey

Sarah is going to see the title of this blog and her little heart is going to think "Ooooh, Emily heard from Oprah," because she asks me this every time I talk to her! Sorry folks, it's much more boring than that, although I certainly wish that I could say that Oprah had called!

The purpose of this blog is two-fold: 1. to address questions from those of you who have asked about still writing to Oprah, and 2. to address the unexpected emotional journey I experienced after writing to Oprah.



First:

Several folks have asked me if they can still write to Oprah and have also wondered what I wrote, if the links were still 'hot links', etc. I have hesitated for a very long time whether to even write another blog on the topic because I do not want anyone to feel pressured or nagged.





So, if you've already written (and I have no idea who you are!), I really cannot tell you how much I appreciate it--other than to say A LOT!

If you haven't written and you've had enough hearing about Oprah from me (understandably, as I've become quite obsessed), just skip this part of the post and go to part 2.





Here are the links:

Link to letter I wrote to Oprah:



http://adancinglight.blogspot.com/2007/11/i-wrote-to-oprah-i-cant-believe-i-did.html





Link to the topics I replied to:





http://adancinglight.blogspot.com/2007/11/more-about-oprah.html





Link to how to contact Oprah:





http://adancinglight.blogspot.com/2007/11/help-me-be-on-oprah-show.html





All of the links are still 'hot links' and the categories are still up on the Oprah site. The only difference appears to be that submissions for both topics appear now to be going to the same 'team'--Team JS, whereas before one was going to Team CZ and the other to Team JS. Not sure.





My cousin asked about sending pictures--I sent a bunch of pictures in snail mail of our house, so hopefully they can just reference those in regards to your letter.


Second:

When I wrote to Oprah I thought it was just for fun: a little distraction from herxing, a lot like dreaming about winning the lottery (for which my friend, Jeannine, is infamous).

Soon, I realized it was about so much more. One night while Dad was here for dinner, I commented that "I was just doing it for fun." Dad looked me in the eyes and said, "It was about more than that Emily." And he was right.

I took a big risk (for me) by writing in the first place. I took an even bigger risk by asking my friends to help me out. I wondered how this would be perceived. For the most part my friends were excited, supportive, and having as much fun with it as I was. But there was also the opinion that what I had done was selfish and ungrateful. The opinion was that others are in more need than I am and I am not in need of this home makeover. The opinion was also that by saying I wanted more, I was ungrateful for what I have.

When I wrote, I knew that it wasn't so much about need as it was about want. I know that others are in incredible need in ways that I am not, and I hope that I have communicated this clearly in the past and continue to now. But Oprah wasn't asking for the 'neediest person'. What I knew for sure when I wrote was that having a space we love is important to our physical and psychological well-being.

Beyond that, the lines get blurry. Is it okay to want? Is it okay to want more than we have? Can we want more (within reason) and still be grateful for what we have? Can these things coexist? Can we want without being seen as selfish? Is it okay to feel that even though I don't need this, having it happen would bring me incredible joy? Is it okay to want the space in which I spend all of my time to be a place I love? How do we find the balance between need and want? I'm still trying to figure this all out, painfully and slowly.

Stepping back from the situation, I can laugh a bit. I mean, isn't Oprah all about personal growth? Wouldn't she love that writing this letter to her took me on a deep spiritual journey? Wouldn't she love the Ah-ha moments I'm having?

Just today we've all been arguing about how to put a new door on my bedroom, who should do it, who should pay for it, should we put new doors on all of the bedrooms, and on and on. I never realized putting up a darned door would cause so much stress.

What I have realized is that buried beneath what I thought was 'just for fun' was a feeling of being trapped, frustrated, overwhelmed, sad, and exhausted. I want to feel independent, yet I'm completely dependent on others to do these things for me--financially, physically, etc. I also felt that the last thing that my mom, dad, Abbie and I had emotional energy (and physical energy) for was trying to remodel/redecorate. I thought that maybe if Nate, the 'miralce worker of decorating' came, we'd all feel a huge weight lifted, we would feel a new sense of life and beginnings, and we could focus our limited energy on the people we love and on healing (for Mom and I). (Seriously, Nate is can create an amazing space out of any project he tackles).

How can I create a new bedroom that I love when I can't go to the store? How will it be 'my own' if others have to do the shopping and decision making for me? How will I find the energy to make all of the decisions to pull the whole look together? And who will execute it?

And, although my bedroom doesn't look like a 'sick room' it feels like one. This is because all of the worst times during my illness have taken place in this room--and I spent 24 hours a day in that room feeling as if I wanted to die.

I thought that if someone like Nate came to 'save the day' and make a new bedroom, and even help us with our whole house, it would affect my entire well-being, as well as my mom's. Just dreaming and thinking about this prospect gives me a feeling of new beginnings and fresh starts.

I have a fellow DINET friend who recently remodeled her home, and she is also home bound. She said that having the house the way she wanted it and having it accessible to her disability made her so happy. How neat would it be if someone could find ways for me to comfortably recline and type? Or have the TV set up so that I can view it without my neck hurting? Or have a vanity to sit down at so I could maybe put on some make-up? Soooo cool! How great would it be to have a place just for visitors? And a place for my mom to call 'hers'?

So, writing to Oprah became something so much bigger than just 'fun.' After I wrote I quickly became propelled into this world of really wanting the fantasy to come true. The biggest challenge for me has been letting go, and learning that what is meant to be will be.

Now, I still want it really, really badly. Really badly. But I also have let go of feeling that I have to have it to be happy. Still, on days like today when we're all fighting about what to do, and I feel physically ill from the stress of it all, I want Nate to knock on my door.

In the end, I have learned that wanting a face lift for the house runs so much deeper than coats of new paint, new furniture, or even new doors. It is about finding peace in the space I live, about feeling a sense of control over something in my life, about making a home out of our house, about creating harmony for Mom and I, and most significantly, starting over, feeling a fresh start, and holding onto hope that things move forward, that healing will come and that the space in which we live can, through it's comfort and beauty, foster that healing.

Blessings and gratitude for those of you taking this journey with me,

Emily

P.S. I just ran spellcheck and I laughed because the other day blogger did NOT recognize the word dreidl, but it today it recognized the word Oprah!

HAPPY NEW YEAR!!

"May peace and peace and peace be everywhere."

--The Upanishads (c. 900-600 B.C.)

Well, it seems I'm a little behind in getting my New Year's wishes out to all of you. I'm still a bit shocked that it is 2008, quite frankly!

May 2008 be a year of peace in your own heart and spirit;

And may 2008 find us closer, rather than farther, from a more peaceful world.

Before me peaceful

Behind me peaceful

Under me peaceful

Over me peaceful

Around me peaceful

--Navajo Prayer--

Blessings and all the Best to you in 2008!!!

Emily

Photos: On December 30Th we received a beautiful nighttime snow. I let Asher outside at about 10:30 p.m. and the snow was so glorious and PEACEFUL. I LOVE snow, and we've had very little of it this year. This seemed like a nice little 'early new year's present'! It only snowed about 2 inches and did so in just a few hours but the big fat flakes and the glistening snow were absolute perfection.

Vote! If you could participate in the Iowa Caucuses, for whom would YOU vote?

You'll find the voting poll on the right hand side of my blog. Candidates are listed in alphabetical order, Democrats first, then Republicans. Cast your vote before the Caucuses end late on January 3rd. (Subscribers: You will have to go to my blog itself (www.adancinglight.blogspot.com) to vote, rather than just reading this entry in email).

HAVE FUN!


I realize there are about four or more topics that are viewed as 'those that should not be spoken about', including religion, sex, politics and money. As you've probably figured out from knowing me over the years or just from reading my blog, I'm not exactly one to follow those unspoken rules.

For starters:

Religion: I am publicly and openly sharing my spiritual journey with my readers. It's part of who I am and so I share, but not to push it on anyone. I love learning about all faiths and growing with others spiritually.

Sex: Okay, so those who knew me in college knew I LOVED sex education and handed out plenty of free condoms on campus as part of the student health group. And no, I did NOT go to a liberal college! I worked in a Family Planning Clinic for a summer. I thought I'd 'grow up' to be a Nurse Practitioner focusing on women's health and lots of sex education. This makes those who know me laugh.

Money: Been there, done that on my blog. SSI, Food stamps, poverty--there's no avoiding the reality.

Politics: My dad's a political junkie. It's hard to be around him and not talk politics. Mom's a news junkie. It's impossible to grow up around two sociologists and not discuss politics I think. Abbie, well, she just puts up with Dad! Honestly, I think that if my dad had all the energy to do all of the things he loves, one of them would have been to be a local politician. First of all, he's quite a charmer. But he also would have done an awesome job of what good politicians do--intelligently and passionately serve our citizens. I grew up surrounded by political conversations and debates, and now, I'm passionate about politics too. So, as with the other 'those that should not be spoken of' topics, here's another one I just can't resist.

So, just for fun--since most of us don't get to participate in the Iowa caucuses--and they are a HUGE step in the decision to who becomes out next president, I thought I'd give my readers a chance to cast their vote as if they were part of the Iowa caucuses.

I can't guarantee it, but I think the Blogger polls are quite reliable--better than some of the voting machines around the country! I can't guarantee much in the realm of my 'sample population' though!

And, yes, I am completely prepared to have my candidate of choice lose in this vote!

So, cast your vote. It's completely anonymous. Most of all, have fun.

Oh, and you're on your honor to only cast your vote ONCE.

Voting will close at midnight Pacific time on January 3rd, about the time I expect Iowa caucus results to begin pouring in.

Vote Now!

Emily