Lyme Log: Chickens and Eggs

I'm long overdue for a medical update.  I always put off writing them because it's so much more fun to write about other topics! But I also know that many of you have been asking me questions and I've been telling you I'll blog about it with the details.  A lot has been going on in the past few months.  I'll try to tell it in parts!

When I snapped these photos of bird tracks today, I didn't plan on writing a blog post titled chicken and eggs tonight. Although, I do hope this was not a chicken crossing our front porch...

Medically, I never feel 'sure' of my decisions--I never know if I'm doing the 'right' thing, if what I'm doing is working, if what I'm doing is 'enough', or in truth, if what I'm doing to fight the Lyme is going to be worth it in the end. 

Taking a break from the Bicillin injection last week was one of the best decisions I made because it gave me a chance to 1. see the progress that I have made, 2. have some time to enjoy Britt, Carrie and David, and 3. clear my head enough to feel like I can forge ahead with the Lyme treatment.

Before Carrie came to visit, I emailed her about the visit. I was trying not to seem stressed, but she saw right through my email and noted how stressed I sounded. I realized how much it was NOT about her visit, but about feeling completely and totally overwhelmed medically. A lot of tears have been shed the past couple of months while I tried to figure some things out. 

At this moment, I can say that I feel a little more clear-headed and can hopefully blog now about what has been going on and the decisions we have been making. 

When we added Diabetes Insipidus into the mix of things I began to feel even more overwhelmed because I wasn't sure where to be putting my energy. Tackle the major ANS issues I have been having? Tackle the Diabetes Insipidus so that perhaps I wouldn't be up all night peeing and would get some sleep? Tackle the increasing depression and anxiety that seemed to be a result of the persistent physical issues?  Tackle the Lyme harder and put the other things on hold? I felt that the combination of the four things put together was about to put me over my tolerance threshold! I was also caught in a vicious cycle of feeling crappy, but not knowing what to do about it, so in turn I did nothing for awhile. I became so paralyzed that I didn't even know which doctor to turn to first.

I felt, and still often feel, like I'm spinning in circles, like it's one step forward and two steps back, and like it's all just a wild goose chase. With these illnesses there really is not a right or wrong answer, a known quantity, and standard treatment protocol, or even research to give us a clue about what to do.

One night I almost didn't answer the phone because I was feeling too sad and tired, but I did. It was Loralea. I started to cry on the phone.  I said that I just didn't know where to go and what the right thing to do was. I didn't have a way to know if I was on the right track or not. Am I putting myself through this horrific treatment for Lyme disease, making myself sicker in hopes of getting better, in vain? What can I hope for and how long will this go on? Because there are no answers I have to run on faith and hope. And sometimes I run low on those.

Jeannine compares my journey to a marathon without an end in sight. Loralea said that the entire ten years I have been sick I have not been able to receive treatment and then focus on healing--I've always been in flux about what we are dealing with medically. Her analogy was that I am fighting on several fronts, several wars (four to be specific: DI, Lyme, ANS, Depression/Anxiety) and it is difficult to know where or how to use my energy.

So what has left me feeling calmer? Mostly some very good medical care. And some very healing medicine in the form of a little being named David, along with Britt and Carrie.

Late in the fall I began having increasing difficulties with my ANS, especially with falling blood pressure at night. This left me stalled in terms of increasing the Lyme meds because they tend to worsen all of my ANS symptoms.  I became fearful that I wasn't 'keeping up' with the Lyme disease and it was getting worse.  I also became increasingly depressed and anxious from all of this (along with other grief I've been feeling). Then I added in the appointment with the endocrinologist to rule Diabetes Insipidus in or out. 

Which were the chickens and which were the eggs? And which should we treat first?

The major questions at issue became:

Are my Autonomic symptoms worse because we are not treating the Lyme aggressively enough? 

OR

Are my Autonomic symptoms worse because because the Lyme treatment IS working?

In the former case we would need to focus on trying to find a way, despite my low blood pressure and other symptoms, to increase the antibiotic therapy for Lyme disease. We would assume that the Lyme, which has attacked my ANS, was getting worse.

In the latter case, we would assume that the Lyme treatment IS working, but it is stirring up worse Autonomic symptoms because this is my 'weak spot'.  As the spirochetes die off, break into pieces, and release toxins, they are likely to worsen the symptoms I am most prone to. See more in my blog on the Herxheimer reaction: (http://adancinglight.blogspot.com/2008/04/lyme-log-what-is-this-herx-thing.html). 

In the end after much back and forth with Dr. ANS, we decided that most likely the Lyme treatment is working and as a result stirring up more ANS symptoms.

As a result we have spent the past two months focusing on finding medication to support my ANS.  We have now found something that works quite well. 

Now the plan is to increase my Lyme medications.  As I increase them, I will continue to dialogue with Dr. ANS so that we can do all that is possible to support my ANS and help me to tolerate the Lyme treatment. The faster I can go with treatment, the sooner and better my hopes are for improvement.  

After finally getting the ANS meds tweaked, I spoke with Dr. Lyme this past week. I now have a plan for increasing my Lyme meds and have started doing so. 

Once we stabilized my ANS more, I started to feel a bit calmer and less scared that the Lyme treatment was not going to work. In turn my mood improved some. As for the peeing stuff, that's still in flux.

I am guessing your head must be spinning by now from reading this medical update! I'll leave it at this for now. In shorter posts I'll update on each front individually, as I've gotten a lot of questions about the treatment plan for Lyme, what we did for the ANS issues, what came of the Diabetes Insipidus tests, and an overall 'progress report.' Those topics should keep me busy for a while on top of all the other stuff I like to blog about!

I hope we are on the right track now in figuring out which problems to tackle and in which order. My head is spinning a little less these days. And I feel a little less overwhelmed by the chicken and egg dilemma.

Now to forge ahead with the Lyme treatment...

Blessings,

Emily

Photos:  Bird tracks across our front porch today.  I think the one with lots of little prints looks like the bird was doing a little 'snow dance'. The tracks made me smile when I went out to the mailbox today. Remind me though, why I dared go out in that cold to get a stack of junk mail? (No postcards from Mexico yet Dana! :))

Steps...

Today...

I walked up and down the stairs in our house. 

I have not done a flight of stairs in a very, very, very long time (many, many years).

When Jeannine and I lived in our apartment in 2001 I was able to do stairs daily. After that I could do stairs sometimes but have not done stairs at all (except one very memorable flight) since 2005.

I took Asher downstairs (and a bunch of his toys) hoping to play with him on the carpeted floor instead of on the hardwood floor upstairs. Usually he is always ready to play, but he didn't seem to grasp the magnitude of my efforts and he wasn't in the mood to play much! Oh well.

Here's to baby steps...

I just had to share my little victory...

Emily

David: Post Chicken Dance

After David does the chicken dance to 'get naked'...it's bath time! 

All three nights that B, C and D were here I spent bath time with Carrie and David. Definitely one of my favorite parts of the visit. Britt always knew how much I wanted to spend this time with the little man, so she just offered to do the dinner dishes and said, "Emily, do you want to go help with David's bath?" So very nice!

I got to help with bathing a bit, and also lathering Mr. David up with lotion for his dry skin. 

He's very serious about his baths! And about this wash cloth. It feels soooo good on those sore gums.
Yeah, all clean! No more peas from dinner all over his face. Someday when he is older and not listening to his Aunt Emily, I will have to tell him I bathed him and washed his little bum so he'd better not talk back to me! :) Just kidding!

Look at him in his little sleeper! 

After his bath, Carrie nurses him, reads to him, and sings to him. Watching Carrie as a mother was really an amazing, amazing gift. I know my friends are wonderful and loving mothers. But seeing Carrie in action and meeting David is something that I'm still in awe of.  I'm still spending my days missing them, picturing his smile, hearing Carrie sing to him. 

David is such a joyful, good-natured, happy baby. Carrie is such a calm, loving, gentle, patient mother. She mothers with the grace I can only hope to have if I get the chance to be a mom. I am not sure there is another word to describe watching them together other than simply BEAUTIFUL.

Every time I think of them, I get teary-eyed through my smile. I miss them already. And I don't know how I'll wait a whole year to see my little man again. I'm so incredibly blessed that Carrie makes such an effort to keep me in her life, and now to make her child a part of my life too.

I love you two so very much,

Emily

P.S. I warned you all I'd be blogging a lot about David in the week following B, C and D's visit!   

B, C, D, and E!

I just wanted to share two of my very favorite pictures from this past weekend with Britt, Carrie, and David. Here's a picture of all of us together--B, C, D and E! 

I think I took over 75 pictures! (I've always had a thing for taking a LOT of pictures--I never want to miss a Kodak moment!). I know I'm going to go overboard in posting pics so bear with me. It was one wonderful weekend.

In the picture below we are all getting David ready for his bath. He's such a joyful, happy, loved baby and this picture just makes me smile! He's at the age when he doesn't really want anyone else to hold him other than mommy, so I really, really treasured the moments that he let me hold him. This was one of the best!

If possible I will continue to post about the weekend, along with other topics, throughout the week. 

I took a week off from my bicillin injection last week so that I could feel better for the visit with B, C, and D. It worked! I didn't sleep well most of the week/weekend, but I still had more energy than I have ever had for company. Tomorrow, it's back to 'work', back to getting a shot, a phone consult with Dr. Lyme, and probably time to do some increasing of my Lyme medications.

Mostly, I just feeling like shouting out loud with joy right now that I was able to have this weekend with B, C, and D. 

I am grateful that my body cooperated to some degree and that the new blood pressure raising meds gave me more energy. 

I am incredibly blessed that B, C, and D travelled all this way to visit. This is the first time I have been able to meet one of my friends' children--and it was amazing. I am so thankful to Carrie for allowing me to be part of David's life in this way. 

Britt and Carrie made the weekend extremely special. They cooked, loaded and unloaded the dishwasher, went the the grocery store, planned the menu, found their way around the house, and helped me out by getting out snacks or lunches or whatever I needed. They are both great about saying, 'Hey Emily, do you need to sit down? Or recline?' They also made it so that by doing some things for me that I might otherwise have done for myself, I had more energy to play with David, which was really special.

They made it so easy to have company.  And for having never spent any time together in person before this trip, I thought Britt and I got along great! We were all so relaxed together.

We had a nice combo of girl time and time with David. He's an absolute light and I'm completely in love with my little nephew!

Thank you B, C and D for the amazing, beautiful, wonderful and fun visit!

I'd say it was a pretty good week--ushering in a new president and ushering in a great set of visitors! What a way to start off 2009!

Lots of love,

Emily

Photos:  David, Carrie, Me, Britt; Me and David

For My Nephew David...

I started knitting this baby afghan soon after I found out that Carrie was pregnant and that I was going to be Aunt Emily to her baby. Now he's almost seven months old and I JUST finished the blanket in time for their visit this week.

I had intended, of course, to finish the blanket in time for his birth! Oh well! Thankfully it's knitted in colors even a toddler will enjoy. And I'll admit I've been knitting fairly frantically over the past couple of weeks, determined to finish this blanket!

This is certainly the biggest knitting project I have taken on so far.  It's also one of the few tangible products I've created in a very long time. It feels very good and gives me sense of accomplishment I haven't felt in a long time.

Thanks to Anne and Alexandra, I received all of the help I needed to make this project possible. Anne shopped for the yarn. She made an executive decision that I was going to make a rainbow. Miss Alexandra chipped in with her opinions on color. That little girl has an amazing eye for color and design. Scott even bought me an extra long cord to use with my circular knitting needles. And hats off to Mom who rolled all of the skeins of yarn for me (Why do they have so many tangles in them?!).

Anne taught me a knew stitch, called Brioche Rib, which creates a fuller and softer texture to the blanket. It makes it warmer too, which is perfect for the kind of winter we are having.

I'll also admit that Anne had to 'rescue' me quite a number of times--tearing out rows, fixing my mistakes, and teaching me what to do. I'm not quite sure she knew what she was getting into when she offered to help with this project!

I'm really excited to give it to David when he arrives.  Carrie says he loves anything soft and cuddly. (This blog will go out after they are here, but I'm writing it before they arrive). 

It feels good to finish a project and to make something to give to someone else. It feels good to create something. 

I realize I'm bragging a little bit...I have been making my Mom, Dad, Abbie and Jeannine all admire it. Thank you for letting me share with all of you!

I really do wish that I could knit baby blankets for all of my friend's babies, but I'm just not quite speedy or energetic enough yet! 

Now, what shall I start on next?

I'm not sure I'm ready for another big project quite yet. Maybe something smaller...Hmmmm....

Maybe a scarf for Monsieur Le Poof (one of the many nicknames Anne and Alexandra have given Asher Dasher)?

Blessings and may David enjoy his 'blankie' for many years! (I had my blankie forever!),

Emily

Photos:  David's baby afghan

Yes We Can, Yes We Did, Yes We WILL...

I could write a lot about politics. I could write a lot about how incredible yesterday was...but I need to rest up for my company. Still, I couldn't go without writing SOMETHING about the day that was the inauguration of President Barack Obama. Plus, pretty much everything has been said. What an amazing, amazing, amazing day.  If you weren't moved by the sea of people on the mall, by the history that we were able to watch being made, by the peaceful transition of power, and by the resilient nation that we truly are...I dare say you missed out.

Throughout President Obama's candidacy, I just wasn't sure I could believe in his concept of change. Every argument against why he should not or could not be president was also on my conscience. What, as they say in Buddhism, was this man's 'underneath'? What could he really do other than deliver poetic speeches full of soaring rhetoric? Where was his experience and readiness to be president?

Change we could believe in? I was pretty sure it was Change I could NOT believe in.

I was pretty sure 'No we can't' was more like it.

After President Obama was elected, I watched him carefully, I listened carefully, and I waited to see who this man really was. And what he meant by change we could believe in.

Just as his daughters earned their puppy, President Obama has earned my respect, my appreciation, my gratitude, my blessings. He has not wasted one moment in preparing for the presidency, putting his nose the grindstone immediately, and showing us all that he understands clearly and deeply the weight of his duty.

He has made me believe not only that we can and that we did, but that we WILL find our way as a nation and as individuals.

Not to sound too cheesy, but I'm truly inspired. I'm inspired by the president himself, and I'm inspired by the historic implications of electing Barack Hussein Obama as president of our country.

As he spoke yesterday, I believed him when he said we chose hope over fear. I believe that this it what we can and must do every day--as a nation and as individuals. I believe that this is one of the hardest and most difficult decisions to make each day. I know that I don't succeed at it every day either.

I believed him when he said we are all created equal. I have always believed this. But when he said it yesterday, it had a new truth to it. And in a strange moment, I suddenly realized that he wasn't just talking about race, he was talking about all of us and to all of us. He was talking to people like me, too--people with disabilities. I forgot I was equal too, while all along believing that he was equal. I know it sounds very strange, but that was a very personal moment for me yesterday.

After President Obama was elected, Gloria Steinam discussed what this 'change' really meant. She said she felt as if she had gotten her future back. She went on to say that the Kennedy and the Clintons had always been inclusive, but the election of Barack Obama is the thing itself. He is the change.

I've loved watching President Obama choose his staff and cabinet--full of brilliant people who just happen to come from many, many diverse backgrounds. Usually, choosing a diverse group of people seems forced.  With President Obama it seems like picking the best people for the job, not choosing who will fill a certain gap in gender or race.

The inauguration was the culmination of something so big I'm not sure I'll completely grasp it until years from now. What I do know is that I shed tears of joy and felt renewed hope in America. I also shed tears for those who sacrificed to give us what we have in America today. I shed tears for the very difficult tasks we have ahead of us--as a nation and as individuals.

After spending the entire political campaign season as a supporter of Hillary Clinton, I needed President-elect Obama to earn my respect, my trust, and my confidence in him.

And he did.

President Obama has a way of inspiring us as a nation. He also has a way of inspiring me as an individual. I know I am not alone in feeling this. He makes me want to be a better person. And he makes me want America to be better. It's been so hard to believe any of this could happen again with President Bush in office. I enjoyed waving goodbye at the television when Bush took off in the helicopter! Ah, the end of an error.

I love saying President Obama. I love that as he says of himself--this tall, skinny black man with big ears and a funny name--is now our president. 

I am convinced that he is the right man for this job at this time. I believe that America made the right decision. 

I believe that we WILL. 

And can I hear an Amen? And get a thumbs up from Sasha?

Blessings to the entire Obama family as we embark on this journey with them,

Emily

Photos:  Thanks to Melissa for the Obama memorabilia! I wore one of the stickers for the inauguration.

Getting Ready for Britt, Carrie and David...

Our house somehow seems a bit more 'alive' with the addition of a high chair, a portable crib, a basket full of baby toys, children's music in the CD players, and board books from the library.

And it's certainly the cleanest my room, the den and the sunroom have been in a very, very long time.  My mom always teases me that it's a good thing to have company every once in a while because I get things picked up for a change.  I'll admit I really like it when all the surfaces are perfectly cleared and the piles gone, but it's so difficult to maintain. When I focus on keeping things clean, then I don't have energy for anything else! So usually the picking up part of things doesn't end up taking top priority.

So, we are ready for the arrival of Britt, Carrie and nephew David! I'm excited to see Carrie again, excited to see Britt face to face (rather than only know each other via email and telephone), and excited to meet my nephew. This will be our first overnight visit from a baby! Asher will be heading to Daddy Day Camp while the company is here.

We'll get good girl time together, spend good quality time with David, eat good food (Britt and Carrie are in charge! Yum!), and hang out in good 'ol comfy clothes.  I'm so very blessed that they are all willing to make this trip from so far away to come and visit. 

They'll be arriving on Thursday afternoon and leaving on Sunday morning. I skipped my shot this week in hopes that I'll be feeling at least a touch better than usual. We'll see. It all depends on whether my body lets me sleep or not!  The new medication (midodrine) that I am taking to raise my blood pressure has been giving me some better days, but it's been unpredictable so far. My 'job' for the next day is to rest up.

Safe travels to you three! I can't wait to hug you Carrie and Britt and kiss my little nephew!

Blessings,

Emily

Photos:  Basket of toys awaiting David's arrival...

A Basket of Toys...For ME?!

Asher seems to believe that any basket full of toys is for him. (He has two plastic crates full of toys and he knows that they are his. He also knows that other stuffed items or such around the house are NOT for him.) 

If the toys are plush they must definitely be for him.

And if they make noises like squeak or crinkle or grunt, that is an extra plus.

Here he is checking out David's toys today. 

Ooooh, what is that I see! More toys for ME? Is that toy a plush one?

This must be MINE!

Got it!

Can I get away before Emily takes it from me? 

Don't worry Carrie, I didn't let him play with this toy! It doesn't have doggie slobber on it, I promise.  I just couldn't resist letting him check out the new basket of toys that appeared recently in our house. I've been keeping the basket covered so he won't get any ideas that the are toys for him!

I know I'm posting a lot of pictures of Asher these days. Every day he makes me smile. Every day he brings me comfort. Every day he teaches me to slow down and breathe. Every day he reminds me about the importance of play. Every day he cuddles with me for hours. Every day he keeps me company.

Today I slept in very, very late because I didn't sleep last night (I know, the story of my life). When he got into bed with me before I got up, he fell asleep nestled against me. When he does this, I feel like I could stay there all day. And it takes all I have to make myself get out of bed!

He's my favorite and most photogenic subject! :) Although, I can hear my dad arguing against this right about now...thinking HE is the most photogenic!

Blessings,

Emily

Lights of 2008: Huggie Heather Visits!

Here's to another light of 2008: a girls weekend with Heather.

Neither Heather nor I went to our ten year Davidson reunion (although I would have gone if I could have!), so we planned our own little ten year reunion.  My mom was out of town at a wedding for the weekend, so it was just me and Heather--which meant good eats and lots of good talks. 

In the above picture, Heather is getting my lunch ready for me. Rarely do I let anyone other than 'parental units' take care of me, but this weekend Heather was in charge. Mom had done the cooking ahead of time, but otherwise, Heather got dinner out, made salad, made my lunches, cleaned up all the dishes, ran the dishwasher, emptied the dishwasher (she even did this at the crack of dawn before she left for her flight!), brought in the newspaper, emptied the dehumidifier, and all other things 'household' that needed to be done.  

Heather was so great about making me feel comfortable letting her take care of me and help out. One of my biggest challenges with this illness is not only being dependent on others, but letting others besides my parents help. It is very, very difficult for me to receive love in this way from others. You'd think I'd have this figured out by now, but I so don't! I want to be a host to my guests, not have them taking care of me...

I'm looking a little pale in this picture to say the least, as I had one of my horrible non-sleep nights before Heather arrived. Still, it's the only time someone was here to take a picture of the two of us together.

Heather and I became very close senior year of college when we spent a lot of time together in our upper-level psych classes. Since then, we've kept in touch only sporadically, but have somehow maintained a very strong connection to each other. We can go very, very long periods of time without being in touch, yet when we do connect, it's wonderful.

I'm not sure either of us quite knew what to expect from the visit. And we each were, admittedly, a bit nervous because we hadn't seen each other in so many years. We hadn't been together since before I got sick, which can and does change the dynamics of a relationship.  I don't go out and 'do' stuff with visitors--we just hang out, rest, talk, eat, and rest some more. Heather was really excited to just have a TV and vege a bit while I was resting! 

To say that the visit was life-changing would not be an understatement. And to say that it made us more sure than ever of our friendship is also true. When both Mommy Bev and Heather came to visit, I didn't really know what to expect--but each visit certainly exceeded any expectations I could have had.

Heather and I had the house to ourselves, which gave us a lot of space just to really talk. And talk we did. We shared things we had never shared with anyone else.  It was healing for both of us. I love it when those sort of conversations, the ones we least expect, unravel so organically and comfortably. 

Oh, and Heather brought me a Boston Red Sox T-shirt, so I'm now torn between the Red Sox and the Chicago Cubs. But, as she says, the Sox are totally a team for me...they waited how many years to win the World Series? Just like I wait each and every day for healing.

Sometimes the 'B and B' here at our house seems eternally busy, but this year Mom and I didn't have as many visitors so that we could just enjoy her being 'on retirement'. The two visitors we did have? Fantastic! Definitely Lights of 2008!

I love you Heather! I can't wait to have you down from Boston again. It's probably only a touch warmer here than it is there right now though! Hugs!

Blessings,

Emily

Photos: Heather being domestic; me and Heather

Fifty State Quarters!

Do you remember when they started minting the state quarters? Can you believe that all fifty of them have been printed? Did any of the rest of you collect all of them?

I know when my mom bought the holder for me (above) she didn't think I'd really stick with the program for 9 years. But I did. Okay, well, she helped me out a lot because she is the one who brought most of the quarters home for me over the past few years.

And tonight she brought home the very last quarter that I needed to complete my set of fifty. 

It was Hawaii, which made it even more special because we all have President-elect Obama's inauguration on our minds. It seemed fitting--a reminder that endings always bring beginnings.

I tried to get a couple of pictures of the quarters, but I kept getting that goofy reflection in the middle of the cardboard holder. I really need to learn how to use something other than the Auto feature on my camera.

I had a lot of fun collecting these quarters over the past several years and I'm honestly kind of sad that it's over. It was a great way to learn about the states (and learn how pathetic I am at geography). According to NPR, these quarters have been a huge success and many more people than they ever expected collected them and learned about the states. 

What shall I start collecting next? Er, maybe I should be thinking about getting rid of things next! At least the quarter collection is neat, tidy, and takes up virtually NO space!

Blessings,

Emily

Recharging...

Okay, so it's no secret that I'm feeling overwhelmed and exhausted on a new level lately. After a couple of good talking-tos from from friends, I'm feeling much calmer. (Thank you girls!). I also emailed extensively with Dr. ANS today and he had some more suggestions for regulating my blood pressure, and hopefully minimizing the number of nights I am up sick with low blood pressure.

Mom circled my horoscope in the paper today and I thought it was pretty perfect:

Recharge your batteries.  It is not a fortuitous time for taking on any heavy responsibilities or making weighty decisions.  Enjoy making plans for the upcoming weekend; spend time with family.

It's giving myself permission to take the time I need to recharge that is the biggest challenge. And I know I'm not alone in this constant struggle.

When I saw Asher all stretched out on the floor tonight in my bedroom, I had to snap a picture. At least this time he was in here by choice, not by force (as he was yesterday!). He made me think about giving my body and mind the rest that it needs.  He certainly doesn't have trouble easing up on himself or problems with putting too high of expectations on himself! :)

Blessings and a good weekend to you,

Emily

More Snow...

Let's see...today I got up at 5:15 after being in bed all day post-Bicillin shot and up much of the night with low blood pressure. And I think, perhaps, at 10:00 it's time to get back to bed!

However, I did wake up just in time today to see a fresh snow fall beginning. And a beautiful one it is! Here's Asher having just stuck his nose in the snow. I wasn't feeling well enough to do more than open the door and take a couple of quick photos that way, so they aren't as close up as I would like. Still, the snow is MUCH better than the ice and it's absolutely glistening, as you can see from the photo below.

This snow is just asking for someone to make snow angels in it...Asher has been making his own 'designs' in the snow!

Lot's of Asher footprints outside the door! He was pretty excited to go outside in the snow after having been cooped up in the bedroom with me all day. He tried to make me get up several times today by jumping up on the bed and trying to lick my face. Or making pathetic little barking and whining noises. He has quite the internal clock--and knows when it's time for the kids to come home from school, when we get out his food, and when we usually feed him. If these things don't run on time, he lets us know! 

Hope you are staying warm wherever you are! It's pretty cold here!

Blessings,

Emily

Please Press the 'Hold Button' on 2009!

If only I could live in the moment like Asher! This is his absolute favorite spot in the house, especially during dinner time when he is perched on the ottoman right between Mom and I. He's always happiest when he has his whole 'herd' right nearby. I wonder if I need to buy him his own little ottoman/throne/bed when I re-do my bedroom?

I can't wind down tonight because, as I often do, I'm thinking of all of the things that need to get done and a body that isn't going to keep up with the list of things.  These thoughts literally make me want to throw up.  One of the largest stresses for me is the sadness I feel over not being able to be a friend and relative in the way I want to be.

The only thing that I could think to do was to blog to let you all know where things are at, as I expect the next three weeks to be filled with appointments, post-bicillin hazes, and visitors. I will have my usual low lights (more appointments and Bicillin shots) as well as one MAJOR high light--a visit from Carrie, Britt and my nephew David. I need to save up all of the energy possible to prepare for having a seven month old in the house! And then, I will need some serious recoup time!  

I'm constantly frustrated by the lack of energy I have to match the desire and the need to keep in touch, reach out, and hear about your lives.  

I could write a tome on this subject, as I've been thinking it over a great deal lately. Because the difficult truth is that I often get lonely. I want to write, I want to call, I want to have more visitors, but the reality is that my body has rarely been cooperating with any of that lately.  I've been having problems again with talking on the phone--not quite sure why. 

I've turned increasingly to blogging, which I enjoy, but I also know that it leaves out the personal touch that I so desire to give each of you.

I know I've written blogs mentioning similar issues before and I really do sound like a broken record at this point--asking for your patience, asking you to know that I'm still here, and that you matter to me.  I just don't know how to let you all know in a way that is sufficient. Because a blog post doesn't feel that way at all. If you have any suggestions, especially those of you also dealing with low energy and illness, please let me know! How do I let you each know how much I care? How to I tell you how much you matter? How do I sustain our relationship when I don't have any energy to talk on the phone or email? 

Every day the decisions I make about how to spend my energy points are incredibly difficult. And I rarely end the day feeling peaceful about them. I usually have a nice dose of Jewish guilt about everything!

Some days there aren't really any energy points, especially after my shot. It's frustrating to have, on a daily basis, most if not all of my energy go to surviving the day. Although, come to think of it, Asher really has no complaints about focusing his day on the basic needs of life! Still, he manages to pack in quite a bit of love and joy. 

I'm working on balance...and really hoping that by February, I'll be ready to start the new year! I am seeking the help I need to try to work through my current struggles...and part of my challenge is to be patient with myself and to make sure that I give myself permission to rest! One of the major reasons I felt and continue to feel so unready to start a new year is because I just feel so bogged down and so far behind.

I want to learn to end each day with a sense that I did my best. Maybe I didn't get to do all the things that I needed to do or any of the things I wanted to do. Maybe I did things I wanted to do and not things I needed to do. Maybe the one thing I did was rest. I want to be able to say, as one of my fellow DINET friends is able to say, that I gave my day my best, that I did my best, and it was good enough. I admire her so much for this.

While I continue to work on this whole balance thing and during the next few weeks, I'll keep you posted as much as possible via blogging and touching base with little hellos on Facebook. It's less than I want to do. It's the most that I can do. And somehow these two realities have to find a way to be at peace, rather than at war, with one another. 

Thank you for continuing to read my blog and journey with me. It gives me great strength. 

Blessings, 

Emily

P.S. A more uplifting post to follow next! :) Perhaps a high light of 2008 again!

Photo: Asher on 'his' ottoman tonight after dinner. 

Lights of 2008: Mommy Bev Visits

I'm a little slow in getting started on my series of 2008 Light posts. If I'm going to finish this series before the end of 2009, I think I will need to learn brevity! And learn it fast! :)

High Light One:  Mommy Bev Visits!

Many of you have heard my talk about a woman I have come to call "Mommy Bev." I met Beverly on DINET in 2004, and we soon began chatting over email--writing long, authentic, heartfelt emails.  Since we met, Mommy Bev has remained a constant source of unconditional love, support, guidance, compassion, and empathy. She came to be called Mommy Bev because she, in so many  ways, mothers me. She's also a Jewish mommy!

I remember reading an article in O, The Oprah Magazine, many years ago discussing mothers. The message was that we can never have to much mothering, including from sources other than our own mothers (and I have one amazing mother). I really do love that sentiment.

When Mommy Bev and I met online, I had no idea that I might have Lyme disease. Mommy Bev, herself, has Lyme.  Without her, I would have been and would continue to be even more lost and overwhelmed by the symptoms, the decisions, the searches for doctors, the questions than I already am. She has been a constant source of not only knowledge, but also support. It would be impossible to imagine this journey without her--so impossible that I may never have even found out I had Lyme disease without her guidance.   

Our paths have intertwined in ways we never could have imagined. Sometimes we used to email each other and happen to be listening to the exact same book on tape at the same time. Our connection has had this amazing quality to it from the very beginning.  When I doubt where God is in my life, I remember the ways in which people like Mommy Bev have come into my life--seemingly by coincidence, but with such great purpose and guidance.  

She's a person who mothers me without asking for anything in return. It's very difficult for me to accept this, but I'm working on it! She has an analogy for everything. When I needed to erase the words of the gynecologist from my mind, she suggested picturing a teacher wiping the chalkboard at the end of the school day and clearing the words away.  When I say I don't want to add to her already very full plate, she tells me she has plenty of plates for me--with my name on them. If something bad happens--a shoe doesn't drop--a pair of army boots drops!  

Mommy Bev is a constant source of love to me, and also a constant reminder of what it means to endure, to fight, to have courage, and to have strength. 

As you can imagine, we were so excited to be able to actually meet in person. I am so incredibly humbled that she came to visit. I was definitely nervous! Would she be who I thought she was? What would it be like to have this person in my house whom I had only ever talked to over email and on the phone? 

As you can see from the photos, we hugged a lot. And we felt like old friends together. I even came in the den, laid on the bed with her, and we talked like we were having a slumber party between two women who had known each other for a very long time. 

She arrived on Mom's birthday and left the day before Mother's Day. I thought that was a fitting weekend to have two 'mothers' in the house! The visit was very quick, but just right for both of us energy-wise.

Here's Mom blowing out her birthday candle! :) We didn't do anything fancy--so she is just having a chocolate covered dried apricot. Pretty yummy anyways! 

Mommy Bev game my mom a beautiful apron that she wears all of the time.  She gave me Sarah Brightman CDs, as music is always the perfect gift for me.  And every time I listen to them, I am reminded of our visit.

We had a wonderful visit. I am so grateful for the visit for so many reasons. In many ways, it gave me a new level of comfort and faith in the lasting love of our relationship. Right now, neither of us has much energy to write. So we don't get to keep up with each other much. That's hard.  But it is also a lesson in loving each other even when the energy to stay in touch isn't there. I'm able to rest more fully in the relationship now than ever before.  Meeting in person, and hugging each other, meant making a special relationship even more special.

I love you Mommy Bev!

Blessings,

Emily

Photos:  Mommy Bev and me hugging. Mom blowing out her birthday candle. May 2007.