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.

About those piles...

So, in my last post (the Thomas Edison one), Mom was pictured napping in the sunroom with Asher. 

I just want to take FULL RESPONSIBILITY for the piles of mess in those photos! Thankfully, I have finally gotten them picked up...with some major help from Rebekah.

I wish I could be as neat as my mom! I so take after my dad when it comes to piles...

Just to let you know...the piles are gone now, the 24 urine catch is about to be started and completed, and the MRI is on Monday. After that I will get to start taking the DDAVP more frequently or at higher doses.

I am honestly hoping this helps, as the other night I woke up to pee every 15 minutes between 4 am and 8 am. After that I woke up every hour until I got up at 11:30 am. So, I got a whole 2 hours of sleep before starting to wake up to pee.

When I told Jeannine about my night she said she would be in tears if that was happening to her. I realized that I get frustrated with the situation, but I've also come to be so used to it that I forget how bad it is. 

Let's just say, Jeannine's life is incredibly tough and incredibly challenging. So, when she makes this sort of comment, it's the ultimate reminder that it's okay to be frustrated, that it's okay to want this to improve, and that it's no wonder I'm completely, and utterly exhausted with this issue on top of the other fatiguing things going on with my body.

Anyways...really this post is just to clarify that those piles are totally MINE, not my mom's! She presents a much neater home! :)

Hoping for fewer piles in 2009,

Emily

Photo:  Our redbud tree covered in ice during Wednesday's ice storm. Unfortunately, I was too sick to try to get a better photo--it was the day after my bicillin shot and I was too weak. Today, we had a BEAUTIFUL winter snow!

Thomas Edison, The Light Bulb...and Diabetes Insipidus

Earlier this week, I signed into chat on Facebook. Not something I usually do because I could spend, um, all day there. 

I saw one of my wonderful old friends from Davidson online, whom I just reconnected with last year through Facebook. We started chatting and ended up talking for a very long time. I was particularly low that night--feeling pretty defeated and frustrated.  But Patrick just kept giving me the gift of listening, validating, affirming, and encouraging. And the gift of time. 

While we were chatting we were talking about all of the trials of trying to find answers for my medical issues. He said to me, "What do they say about Thomas Edison?" I'm not so good at these trivia things. I said, "What?" "That it took him something like 8000 tries to create a working light bulb," Patrick replied.  Patrick's message was to keep trying, keep pursuing answers and one of these days we'll find the answers.

I needed that little boost, both from a friend and from the medical world.

And I got it at my appointment with a new endocrinologist on Friday. I'm starting to feel like I'm on try number 8000!

I had no idea what to expect, whether or not I would be taken seriously, or whether this doctor would even know anything about Diabetes Insipidus.

I could not have asked for a better trip from start to finish--except that I didn't get any sleep Thursday night! 

Clear weather.

Very little traffic.

Comfy pillows and blankets so that I could rest and recline.

Dad drove.

Mom gave directions and packed all of the breakfasts and lunches.

Abbie took care of Asher (I think he 'supervised' her taking down Christmas decorations). He's a very good supervisor!

I had new ear buds for my iPod, so that I could block out my parents talking and sleep! It's magical! :)

The appointment was ON TIME!

The doctor was attentive, had a great bedside manner, and knew all about Diabetes Insipidus.

I napped the whole way home.

So here's the inside scoop for those of you who want the medical scoop on things.

I brought with me the records from my ANS doctor explaining my illnesses and diagnoses of Autonomic Nervous System Dysfunction and Lyme Disease. I also brought the test results from my 2004 test for Diabetes Insipidus. 

Dr. Endocrinologist reviewed the records before he came in to meet with me. After reviewing my records and seeing the test results from the original water deprivation test I had done in 2004, he really felt that I DO have Diabetes Insipidus. We also discussed previous times in which I had done 24 hour urine catch measurements, and the amounts would place me in the category of a person with DI. I also discussed the volume output in short periods of time. Thankfully, I had collected a lot of data over the years that was useful for him to make a diagnosis on the first visit!

I wasn't sure whether or not the results would be of value or not, but I really did not want to have to repeat the test as it is very tough to do. It's a water deprivation test in which you go many hours without drinking any fluids, spend the day in the hospital, and they monitor your urine hourly to see how dilute it is. At the end they give you the hormone vasopressin (the anti-diuretic hormone) and see how you respond to it. They again check your urine to see how the hormone affects it.

We also just simply discussed how often I have to pee and how much output I have. As it turns out, I am on a very low dose of the anti-diuretic hormone (also called DDAVP or Desmopression in synthetic form). This means that we have a lot of room to increase and change my dosing so that I can have better quality of life and also manage my symptoms more. 

We still need to do the following:

--Get the results of other basic endocrine tests (which I did at the lab there) to check other possible causes of large urine output--such as diabetes mellitus ('sugar' diabetes) and thyroid problems.

--Do an MRI of my pituitary gland to make sure that there is not a tumor there (since the symptoms of DI have gotten worse over the years). Many times a cause of Diabetes Insipidus is never found (at least 30% of the time), so it is likely we will never know what caused this problem for me.

--Do a 24 hour urine catch. So much fun! Measure how much urine I put out in a day. Am I really typing this for everyone to read?! Yikes.

--Try taking the DDAVP three times a day (every eight hours) to see if that manages symptoms better

--Return visit in four months (but will hear about lab results and such before then). I really like this physician a lot, but he's an attending and I'm so afraid he will leave the hospital and I'll have to find someone new!

If I do, in fact, have DI then I will need to take the anti-diuretic hormone for the rest of my life. That's not such a super happy thought, but it is better to at least be managing the problem rather than not at this point! I will have to really monitor my sodium and potassium levels. I have a tendency for my sodium to go too low on the DDAVP, which is fairly common.

I'm still sort of in shock. I'm still not sure this is the right diagnosis. I've been trying to confirm it or find an alternate cause for so many years that I still am not sure what to believe. And we need to wait for the test results to come back. 

Since becoming ill, I've seen two other endocrinologists and four urologists. Most of the urologists just kept telling me, "Well, if you drink a lot you will have to pee a lot." Duh. But, I don't drink too much. I restrict my fluid intake even though I am always thirsty. In one of the records I found that my urologist (whom I had really thought respected me and took me seriously) said that my problem was psychological.  I'm still trying to figure out how you create urine output?! He also said that the cause was too much fluid intake and the solution was decreasing fluid intake. I wish it was that simple!

We, as patients, often question how many specialists we should see before we accept the answers we have been given, even if our gut tells us something more is going on. We are so often told that we are doctor shopping, malingering, or just seeking attention. I would give anything to be out living my life rather than spending it feeling sick and seeing doctors. But, I rely on the medical profession to play on my team and to help me find answers. I don't expect them to work miracles. I just expect them to be willing to give me a shot.

In some ways I wish that I had pushed harder for an answer and done so sooner when it comes to the issue of DI. But the reality is that I'm constantly fighting and battling, and it's just not always the same problem du jour. Sometimes more immediate crises take precedent, which is what happened after my 2005 gallbladder surgery. I also started to really just dismiss so many problems as 'just part of the Lyme and ANS' stuff. Not to mention that I have NO idea of what 'normal' is anymore. This is my normal.

In many ways, DI makes sense as a diagnosis. I've never slept through the night without waking up to pee, even as a little girl. This is not normal. I have never made it through a concert or a movie without having to pee. I used to run out at the end of classes at Davidson because I had to pee so badly. I can count on my hand how many times I've made it through a massage with Rebekah without having to get up to pee in the middle. I'm one of those people who always knows were a bathroom is and always knows how to get there before the line gets too long at intermission! In high school marching band, third quarter break was all about using that 15 minutes to pee.

I'm stronger now than I was when I first got sick. And I stand up for myself more. I've been forever changed by ONE comment from ONE doctor whom I saw at Hopkins in 2004. He was a geneticist and he said to me, "Listen to your body and never take no for an answer." I cried.

His words continue to inspire me to keep demanding answers and good medical care. Still it's often very difficult to keep pursuing answers and it's exhausting. 

I'm just so pleased with this appointment that we had on Friday. At the end I said to the doctor, "So I wasn't crazy to think this was what might be going on?" He said kindly, "No, you are not crazy." He was very knowledgeable and clearly had a very good grasp of DI--something that is so rare I wasn't sure how much he would know about it. Luckily, this particular hospital actually does testing for it every Tuesday, which means they must have a fairly significant number of people being seen and/or tested for it. It also helped that he had fantastic bedside manner and personality and treated me so respectfully the entire appointment. 

At my last PCP appointment, Dr. PCP said to me, "What are the chances you have DI, Lyme and ANS dysfunction? Pretty much not at all." Last night, my best friend said to me, "Did you tell her that means you have it then?!" I thought that was a good line, given my medical history.

Just the other day on NPR, right after Patrick and I chatted online, the commentator announced the anniversary of the date that Thomas Edison invented the light bulb. With all this talk about light bulbs, I can't help but hope this appointment was the beginning of a year filled with medical 'light bulb' moments just like this latest appointment. It was certainly a very good way to start off the new year medically!

Thank you to all of you who called, emailed and checked in with me on Facebook about my appointment! I think your good thoughts worked! I'm also incredibly grateful to Dr. Endocrinologist for taking me seriously, for being so focused on me during the appointment, and for being knowledgeable about DI.

Blessings,

Emily

I find spellcheck fascinating...it should be way more hip. Today it doesn't recognize iPod.

Photo:  Post trip slumber. Mom and Asher napping and catching some sun after our return home. He didn't let her nap for long though...he knows when it is time to get his dinner ready and he started staring at her like, "When are you going to get up and feed me?!" How does he have such a strong internal clock? 

Medical Update: Off To Endocrinologist...

In the vein of starting off the new year with medical hope, we're heading off to an endocrinology appointment tomorrow morning. Very, very, very early tomorrow morning. 

The hospital is only about two hours away and both of my parents are going. Abbie is going to take good care of Asher Dasher. 

I'm mostly  just hoping that the doctor will be receptive and open to trying to understand the etiology of my problems and also to finding the best ways to manage them.

Okay, it's a little embarrassing to post this on my blog, but most of you already know that I am famous for having to pee all of the time. Even my friends called me Tiny Bladder in high school. Plus, I'm trying to be authentic and honest about my experiences with chronic illness.

The problem is that I have to pee on average about 20x a day. Just this morning I was up five times b/w 7 am and 1:30 pm (which were prime sleeping hours for me). Sometimes I'm up more than a dozen times at night. I also pee out very large volumes of fluid, even with both 1. restricting my fluid intake and 2. taking what is called DDAVP/Desmopressin, which is the anti-diuretic hormone our bodies should make naturally. When the DDAVP wears off (I take it twice a day), this can mean that I have to pee every 15 minutes. And I wonder why I never get anything done?  

Over the past ten years I have sought advice on this issue, but so far no one has had any satisfying answers. We have suspected something called Diabetes Insipidus, which is not at all related to 'sugar' diabetes. With Diabetes Insipidus, a person either does not produce the anti-diuretic hormone that DDAVP re-creates or does not produce enough of it.

Because so many other medical issues have taken and continue to take center stage over the past ten years, I have had little opportunity to pursue the etiology of this particular problem. However, to say that it interferes with quality of life is putting it mildly. It interferes with sleep, the ability to go places, the ability to rest, etc. etc.

Endocrinologists are in short supply right now in the medical world. And finding one who knows anything about Diabetes Insipidus is especially challenging. I wasn't too thrilled about going for a medical appointment the second day of the new year. But, it is a long wait to get into an endocrinologist, so I took what I could get. It's just not true that people in America don't have to wait for medical care. We do. And sometimes we have to wait a very long time for very important medical care.

Honestly, I just dismissed my issues of large urine output as insignificant and minor for many years. I worked harder to pursue the 'bigger picture', but last year my urologist commented that he had never seen anyone put out such a large volume of urine in his entire career. He said to me, "I have never seen anyone like you in my lifetime, and I will probably never see anyone like you again."  It wasn't until I was in his office and he recorded my urine output that he took me seriously. I had been telling him for years that I had this problem, but it was treated as Overactive Bladder and/or Intercystial Cystisis. Needless to say, I've seen more urologists since then and still have no answers--except that my case is complicated, complex and challenging.

My ANS doctor does not use DDAVP very often and does not have many patients on this medication, so I am starting to believe that I cannot entirely blame this problem on autonomic issues alone (although they may contribute largely to the problem) or Lyme.

Diabetes Insipidus is incredibly rare. So, the chances that I have it aren't that great. But, knowing whether I do or not would be a good place to start. Years ago, I had the testing done for it at another hospital, but it was so poorly done (as they had never performed the test before) that have no idea whether the results have any merit or not. At that time I tested positive for Partial Diabetes Insipidus, meaning that my pituitary gland does produces some anti-diuretic hormone but not enough.

Mostly, I'm just hoping that tomorrow's appointment will start off the new year on the right foot medically.  That doesn't mean I need an answer tomorrow. That doesn't mean I'm asking for a magic wand to fix my problems (although that would be nice!). It just means that I want the doctor to have an openness and willingness to help me. 

Some days, on top of everything else, I'd just like to be able to rest comfortably or take a nap. I'd like to be able to get a good night's sleep. I'd like to be able to drink a cup of hot tea in the afternoon without worrying about how it's going to keep me up all night long peeing. I'd like to be able to make it through a massage without having to pee in the middle of it. It feels like I just get settled in and comfortable and it's time to get up to pee again. Individually, each medical issue might not be so bad, but on top of everything else having to get up to pee so often when all I want to be able to do is rest can be the straw that breaks the camel's back for me. It can be so incredibly frustrating! After my gallbladder surgery, I was often peeing up to 40x a day, when all I wanted was to stay in a supine position so that I wouldn't keep feeling like I was going to pass out!

I have not been keeping up much with medical updates, so I my goal is to try to do so more often through my blog...even if it sometimes means sharing embarrassing details! I'll try to send out an update post-appointment, although I'll likely be pretty crashed from the trip!

Speaking of having to pee...

Blessings, 

Emily

Happy New Year!

I've been emailing back and forth with my ANS doctor a lot lately. Right before the holidays, he wrote the following sentence at the end of his email to me:

I hope the holidays go well for you and that 2009 brings as much hope at the medical level as at the political one!

I couldn't have put my hopes for the new year into words any better. 

At the end of 2008, I really wanted to find a way to 'push back' the upcoming new year. I'm just not ready for a new year. Since it's going to be 2009 one way or the other, I'm trying to hope that 2009 is going to be what my ANS doctor has said.

Here's wishing you whatever it is you need and want in 2009, whether it be peace, love, joy, happiness or healing. This is my wish for YOU.

Much love, blessings, and HAPPY NEW YEAR!

Emily

Photo: Peony in our yard this summer. Did I already post this picture at some point? I lost all of that stuff in my computer transfer! Oops!

Eight Lights of 2008

How do the eight nights of Hanukkah fly by so quickly? I feel like I've just gotten into the groove of the prayers, lighting the candles, and most importantly, letting light triumph over darkness, when the eight nights are over. I always feel a sadness at the end of Hanukkah, and I did so again tonight.

We did enjoy wonderful latkes last night. If my mom might say so herself (and I would agree), they have to be her best attempt yet at latkes. Who knew Martha Stewart would have the winning latke recipe (with a little tweaking to make them gluten-free)? We certainly had our fat intake for the entire month, but they were worth it!

Another high note of Hanukkah this year was winning the local Hadassah raffle. For many years my grandmother would enter my name in the raffle, a tradition we have continued since her death. Not only did we light her Yahrzeit candle during Hanukkah this year, but I won the Hanukkah raffle...so we felt Grandma's presence a little bit more this Hanukkah. The raffle was for an amount of money called "Double Chai"--or $36. Eighteen is chai and multiples are double chai, triple chai, etc. Since chai means life in Hebrew, I hope this will be a good ending to 2008 and signs of a better 2009. I'm not known for winning things!

Mom and I kept Hanukkah extremely low-key this year and did not exchange any gifts, instead choosing to donate to charities. I have to say, it was the most relaxed, stress-free Hanukkah for us. It was also nice to have Mom home from work for a few days as we were able to take some time together to watch an episode of our favorite show (Eli Stone) and begin watching the Lyme documentary Under Our Skin (powerful, sobering, overwhelming, amazingly well-done). I haven't gotten to blog yet about Mom going back to work...that's a longer post for another day! (Let's just say, she's no longer 'on retirement'.)  When I have the energy to watch a TV show together it is a big treat for both of us. 

As I reflected on Hanukkah this year and listened to Hanukkah stories and music, I decided that I wanted to do something at the end of 2008. I no longer do holiday cards and I didn't get a holiday letter written this year. 

I'm not at all ready for 2009 to end. In fact, I'm trying to figure out: is there a way to post-pone the start of the new year so I have a little more time to catch up?! So many things (such as visitors!) happened in 2008 that I never had the energy to share on my blog, but have been longing to write about or at least post some pictures. I'll attempt to do the entries more in pictures than in words!.

In honor of the end of 2008 and the eight nights of Hanukkah I have decided to do eight posts on eight lights of 2008 that I did not yet get to share with my readers. I know, I know, eight. It's a lot. But, I plan on spreading them out into the new year. We'll see if I can even get them done! I'm setting myself up for a big task here. But eight is my favorite number, so I can do it!

In the next couple of weeks, I hope to share with you eight more lights--high and low lights--of 2008. Hopefully, I will mostly share highlights, but I haven't completed my list of topics yet. I'll see what comes up as I go. 

After all, Hanukkah is about darkness AND light, struggle AND triumph. And that's why it speaks to me so much each and every year. 

Blessings,

Emily

Photos:  The candles on the last night of Hanukkah. Our friend, Pam, always finds us these wonderful candles.

P.S. Okay, so google now does not know any Jewish words? I understand spellcheck not recognizing Hadassah or Yahrzeit, but latkes? Hmmmm....

A Cup of Tea with Angela...

Today, my friend Ang stopped over for a nice afternoon visit and a cup of tea. I just think she looks so cute in this picture curled up with her cup of tea. Along with our tea, we shared an afternoon of comfort and catching up as we always do when she is able to come to town. I can't really emphasize enough what a treat it is to see Angela.  We have been friends since fourth grade, and while we talk on the phone and catch up via email, we find that we are most at ease talking face to face in the familiar surroundings of my home. 

I've written about Ang several times on my blog, so today I will keep this short and just share a couple of pictures from our visit. As always, Ang was dressed like a fashion queen from NYC and I was bundled up in a turtleneck and sweater. What I love about Ang, though, is that she's incredibly stylish and always looks fantastic, yet it comes without a touch of pretense. She pulls it off beautifully!

At the end of our visit, Angela's mom and husband Bill stopped in to say hello.  Angela and Bill have been a couple for almost 8 years now and just got married this fall--so it was fun to see the newlyweds!

As always, thanks for the gift of your time and love Ang!

Blessings,

Emily

Photos:  Me, Ang and Bill :) I didn't think I looked that pale, until I sat next to the two of them! Darnit!

P.S. Melanie--look very, very closely at the photos!