Happy Halloween!

HAPPY HALLOWEEN!

Hope you had a good one!

Here is a picture of Miss Alexandra (my favorite little neighbor girl in the whole world) in her Japanese Kimono. She's with her neighborhood friends Matthew (whom I couldn't get to stand still to look at the camera!) and Jacob, the pirate.

I have to admit I'm a bit jealous of her fancy schmancy Halloween costume, which Anne made for her. My mom says all my costumes were of the cardboard variety.

Hmmpphh. The only sewing my mom knows how to do is what I taught her from my 8th grade home economics class. Oh well!

Trick or Treat,

Emily

The (Very Belated) Birthday Blog: The Big 32

As always, I find myself 'taking stock' a bit each year on my birthday. Turning 32 seemed a bit scary (as it seems so weird to be 'thirty something'). Age aside, it turned out to be a most joyful birthday.

Compared to the past two years and the past two 'birthday blogs', turning 32 was a fantastic birthday, giving me hope for better things to come.

We celebrated with a 'birthday week' so I could spread out the fun (and manage it all energy-wise!) Even our mailman was teasing me throughout the week. My birthday was on Wednesday October 10Th.

The cards began arriving on Saturday before my birthday (Go Meredith and Uncle Stan--you beat the Columbus Day back up!) By Thursday the 11Th our mailman, Ben, was writing on the backs of my cards. First it was, "More Cards??????" On Friday it was, "More. More. More. When will they stop?" And by Monday it was "More????" One day he brought packages as he drove down the opposite side of the street and the cards as he came back down our side of the street. He said he didn't want me to get too overwhelmed with excitement all at one time! He also told me to stop lying about my age--that I might be 23, but certainly could not be 32. I wish!

I spent most of Tuesday and Wednesday on the phone--the biggest blessing being that I was well enough to take so many phone calls, although I still missed many calls while I was sleeping or napping. The best part is that I still have all of your singing preserved on my voicemail--and boy, no offense, but I don't have many friends who can sing very well! Aunt Jeanette said she was probably giving me a scare for the day. Dad's singing has to win the award! Yikes! I got to catch up with so many people, which is my favorite way to spend a birthday! I was disappointed that I didn't get to talk to those of you who called while I was still asleep in the morning or napping.

Wednesday evening, Mom made my favorite salmon recipe and we had a low-key dinner with a visit and birthday hug from Dad.

Thursday I needed to recuperate!

On Friday I felt well enough for a little birthday 'party' which I was soooo excited about. This is the first time I've felt up to having a little company. Mom cooked fillet mignon and my favorite gluten-free, dairy-free dessert, apple crisp! A very yummy dinner! And Dad and Abbie came over for dinner. We had such a nice evening and I really enjoyed being able to have a birthday dinner with all of my 'parental units' at one time. I teased Mom that I felt badly that the fillet was such an expensive dinner choice, to which she replied, "That's okay. You paid for it. I used your food stamps!" I'm sure the government would be thrilled to know how I'm using my food stamps.

On Sunday afternoon, Sarah and Bob stopped over for a visit with their new puppy, Buffy dressed up as a 'Buffyfly'. As always, we had a really nice visit and the two hours went by way too quickly. Buffy slept in Bob's arms like a baby the entire time!

My birthday was what I love most--filled with lots of love and time with friends and family. I was able to enjoy that time with people and on the phone more than I have the past two years. When I turned thirty I was so down. This year, I felt so alive and hopeful.

I received so many meaningful gifts, notes and cards many of them affirming my new sense of becoming a butterfly--from Buffy the Buffyfly to flowers in a butterfly vase to an entire gift themed around butterflies and 'sprouting my wings' (little butterfly earrings, Finding Neverland on DVD, note cards, etc). These gifts were affirmation to me that others also see a butterfly sprouting inside me. My spirit feels more alive than it has in a very long time (although I am having trouble holding onto that feeling these days).

I also cherish my Willow Tree 'Heart and Soul' piece which Melissa purchased as a symbol of our friendship, as well as all of the fun cards (love those Hallmark singing cards!) and kind words you wrote.

The gifts and cards were fantastic...but most of all I just cherished feeling alive on my birthday. I cherished being able to enjoy the cards. I remember being too sick to even enjoy opening packages or cards in years past. I cherished every phone call and conversation. I lamented the calls I missed and folks I didn't get to speak with. I cherished our wonderful dinner and time with family. I saved my voicemails (and your singing!) so that I could listen to them all again and write this blog (would have been better to write it a little sooner!)

I hope that each year of my 30's will be better and better. So far, that has been the case. I hope this really is my decade of healing, as I declared on my 30Th birthday. I hope that I am truly sprouting my wings and getting ready to fly again!

Thank you all for the gift of you in my life. Every night after my bath, I lie in bed and listen to the soothing sound of my new 'bubbler' that Mom purchased for me. I allow myself to be quiet and rest in what I have been given. I find that I am continuously humbled and amazed by the abundance in my life. I found myself overwhelmed by this abundance as I celebrated my birthday.

Blessings,

Emily

Pictures, Pictures, Pictures! To enlarge the collage, you must be on the website (not just reading in email) and double click on it. I've included pictures of Sarah, Bob and Buffy; Mom and I on my birthday; Dad, Abbie and I during our Friday night birthday dinner; the butterfly themed flowers from Sarah; me opening gifts from Mom (the bubbler and other assorted goodies); me opening gifts from Dad and Abbie (lots of fuzzy socks! barrettes! (Rachel these new obsessions are all your fault!) and a pedometer). I'm also sporting my birthday crown from Melissa and my cherished Iowa gear.

The larger picture is my favorite picture from the 10Th--I felt like it captured how alive I felt. And of course, Asher is sooo cute! The weather was gorgeous.

Lyme: The History, The Controversy, The Consequences

Many of you have asked me why? Why is Lyme so controversial? Why doesn't the traditional medical community believe in Chronic Lyme disease? Why has this illness become politicized? Why are doctors who treat Lyme Disease losing their licences? And, ultimately what happens to people like me who are waiting for the medical community to decide that we are sick, need treatment, and need help?

Here is a fantastic article from Yankee Magazine that came to us via two people: Dr. Lyme and also our neighbor. So, we knew it was worth the read. It is. Please take the time to read it: not just for me, but also for yourself--to protect yourself from this illness.

Some of the text and visuals are not in the online version, so if you would like me to send you a xeroxed copy, please let me know. I am more than happy to do so.

This article sheds light on a illness shrouded in controversy. It teaches us a great lesson about the power of these teeny tiny ticks (the largest ones are .1 inches in size) to wreak havoc on our own bodies and the medical community as a whole.

This article is chilling to me. Where does this leave patients like me? A very wise doctor recently told me that the New England Journal of Medicine recently published an 'anti-Lyme article'. They have the 'facts' right--based on what we know about Lyme disease, which is very, very little because there is no funding or support for research. BUT, they fail to see that sometimes we have to treat and deal with ambiguity BEFORE we have all the answers. (I am paraphrasing him here)

We treat our pets better for Lyme disease than we do humans? This should be alarming to us all.

Thank you for reading. I promise you will be 'enlightened'!

Trouble in Paradise: One Woman's Journey trhough Lyme tick country takes here deep into the place where medicine and politics collide. by Edie Clark


http://www.yankeemagazine.com/issues/2007-07/features/lymecountry

If you do not want to read the full article, I cut a pasted a few paragraphs that capture how the cotroversy affects patients and doctors as well as how the traditional medical community views Chronic Lyme. All text taken from Yankee Magazine's website.

The mysteries of Lyme haunt her: "One of the things that really puzzles me is that so many doctors refuse to know about Lyme. I was in touch with one doctor, and he and his family all had Lyme. I called him up and he said, 'I don't want to talk about this on the phone,' and he invited me over. I felt as if I were in a Kafka novel. I've never felt anything like this, the strange energy that surrounds Lyme. I asked him about it, and he talked about the denial that exists around Lyme. And then he told me that there was a writer for Newsday who started investigating, and he traced the whole thing to a little island off Long Island where the United States has a biological factory, and that this Lyme bug was an escapee."




Lab 257 has been shut down, but other labs on the island perk along. If infected ticks did escape from this island, they've long since done the damage and nothing can stop them now; Borrelia burgdorferi is out and about, doing its job, making people sick.

And as it spreads, physicians and researchers continue to squabble among themselves: Some say that long-term antibiotics are the only way to treat Lyme, while the more conventional among them advocate only short doses of antibiotics -- and believe that if a patient needs a longer protocol, the illness must not be Lyme. Insurance coverage is often denied.

One way to stop an epidemic is to redefine it. Recent guidelines issued by the Infectious Diseases Society of America (IDSA) have narrowed the disease's diagnostic criteria so tightly that it's hard for any chronically ill Lyme patient to fit the profile -- leaving thousands of people robbed of an answer.

And one way to control an outbreak is to determine which doctors can treat it and which ones cannot. According to the Lyme Disease Association, since the early 1990s more than 30 Lyme specialist physicians in 10 states have been brought before state medical boards under charges of overdiagnosing Lyme and overtreating with antibiotics. This, of course, is a chilling development for doctors who want to treat Lyme patients.


Clearly, the new diagnostic and treatment guidelines and the reduction in the number of physicians willing to see chronic Lyme patients will have a huge impact on the disease's future -- and the lives of the people suffering its ravages.

I realized in talking with these people that my own Lyme disease is ongoing. At the time I was diagnosed, not only was I so unfamiliar with the disease that I didn't recognize the symptoms, but I was also confused by the massive amount of contradictory information available. And I was scared of what it all might end up costing. I'd already spent $731 out of pocket on tests and treatments. So I've ignored many of the painful problems I've experienced since my visit to that island paradise five years ago. Today my health hangs in the balance of a government and a medical system apparently unwilling not only to care for their constituents and patients but perhaps to take responsibility for an epidemic as well -- a scourge that I am convinced can be traced to a scruffy little island at the eastern end of Long Island Sound.

Thank you for reading!

Blessings,

Emily

Here she is....Miss America!

Here she is, the wounded warrior, in all her glory.
Yup, she is going to bop me over the head when she finds out this is on my blog. But I couldn't resist. Asher was so cute up on the ottoman, and Mom looked so cozy and comfy in her PJs.

We both had a very low-key day today which was much-needed.

She did, after this glorious photo, get a 'shower cap hair wash' from Celeste (there are these cool shower caps that you heat in the microwave, put on your head, massage for two minutes, and voila! your hair is clean). Mom felt much better after her hair-washing. She is only allowed to take 'bird baths' and NO showers for at least two weeks! She's not stinky yet, thank goodness!

Blessings,

Emily

Post-Surgery 'Report'

Well, we're hanging in there. We're using all of our energy to survive (literally).

The good news is that the surgery went exceptionally well.

The surgeon was very pleased and said he was able to repair the rotator cuff well. Mom has done very well pain-wise so far. She's struggling more with stamina and energy after major surgery than she is with pain. And EVERYTHING takes a LOT longer with one arm--especially when it's the left arm!

Jeannine did an "AWESOME" job (word choice compliments of my mom) handling everything the day of surgery. She got up at 4:30 am Thursday morning to pick Mom up at 5:30 to head to the hospital. She waited through surgery, called me with a post-surgery report immediately (so she 'wouldn't forget anything the surgeon said') and left a voicemail. (We had a plan set up that if there was an actual emergency she would call my land line and I would have the ringer on, but thankfully we didn't need that plan!). She spoke with the surgeon, met my mom in her room after she left recovery, helped my mom with lunch, left for a bit and then came back to help my mom with dinner. When I thanked Jeannine today and told her what a gift it was to have a friend I could trust to take care of my mom she said she felt the weight of the responsibility and it made her a bit nervous!

Honestly, without her we would have been lost. The nursing care gets, at best, a C- for their efforts. Dad visited Mom Thursday evening and Abbie took over Friday--which turned into a LONG day, as the nurse refused to give Mom anything other than Percocet or Morphine, even though we had specifically requested Tordal. Of course, my mom ended up sick from the Percocet. UGH! Abbie ended up spending most of her day waiting for and or helping my mom get home.

Since Mom's been home we've certainly had our share of adventures. Mom started off Friday, after only being home for a few hours, trying to help me heat up dinner. She was standing at the microwave and began slurring her speech. Then her tongue was hanging out of one side of her mouth and she began to drool. She kept grasping at an something and I kept saying, "Mom, what are you trying to do?" "Mom, you are slurring your speech". I thought she was having a stroke! Thanks be to God, after she sat down and cooled off (she was all clammy) she regained her speech and coherency--but not after giving me a good scare. I told her she had 'pulled an Emily'--as she had almost fainted. The symptoms just manifested in a weird way--probably from exhaustion and pain meds.

Thankfully, Dad and Abbie happened to call on the cell phone and ask if we needed anything and were her shortly thereafter to help with dinner and getting both Mom and I safely to bed.
We would be up a you-know-what creek without the blessing of good family, friends, neighbors (who hem pants and bring homemade applesauce!), a caregiver who loves working for us, and a dog walker who loves Asher.

In all honesty, we're just barely managing. Every day is a struggle. We're exhausted. We're overwhelmed. We fall into bed at the end of each day and collapse. (Well, she falls into her 'Old Lady Chair'). Even with all of the help, we're spent.

Mom has ALWAYS 'gotten' me, empathized to the nth degree, but now she really has a new understanding of the frustrations--the ride services that run on their own schedule, the frustration of ADL's taking so much effort, and how much energy it takes to have others 'do for you'. It is easier to just do it yourself and you wish you could, but you can't, so you patiently give instructions and it's exhausting!

On a humorous note, we're at least 'able-bodied' in different ways--so she stands and heats up dinner, and I use two arms to serve dinner. We took Asher for a short (very short) stroll last night and she shone the flashlight and I picked up the poop! We're quite the team.

We are laughing through it all as much as possible. Mom's already muttered the words, "I'm bored." And, I've said, "Oh, Lord help me for the next month of this!" She already says she has ants in her pants. How do you teach a woman who has NEVER sat still to SIT STILL??!! It took me years to learn to be still, so I'm not banking on her learning this in the next four weeks.

She started PT today, and otherwise is expected to engage in very little activity for the next four weeks. She's been too tired and miserable so far to enjoy her movies or any reading, but each day she's been a bit stronger. Of course, she already overdid it today! Go figure!

So, if we can just keep her out of trouble, we'll be in good shape.

I feel overwhelmed. I'm trying to help out more, but it isn't much. I wish I could do more. I fall into bed at the end of the day and I grieve. I've been having trouble sleeping even though I'm so tired. I'm increasing my antibiotics and the setback from that gets me down--on top of everything else.

I think Mom has been more of trooper than I have been. She's been a super-trooper in my mind. She's even writing left-handed shopping lists and to-do lists. Right now it's hilarious trying to read her writing, but she may just be ambidextrous when this is all said and done!

So, we're hanging in there as best we can. And holding each other up as best we can.

We're grateful all went smoothly with the surgery, grateful for Jeannine's care and that of Dad and Abbie, grateful for the love of friends and family and all of the well-wishes and calls and cards.

Oh, and Asher is taking great care of BOTH of us. He has spent his days never leaving our sides. Some days I think he's not sure WHO he's supposed to be taking care of. On Friday he never left Mom's side until he went to bed with me. And he's been loyal to her throughout. I'm not sure I like sharing! Haha! He's been great for both of us and he's working VERY hard to do his 'job'. According to our dog trainer every dog needs a 'job description' and Asher's has always been 'protector of Emily', but he does a good job protecting Mom too.


If we don't respond, please know we're here. We're just using all of our energy to SURVIVE!

Blessings,

Emily

Photo: Asher, 'the protector', ready for duty. He went in my room for 'nightwatch' and the way he settled onto the bed with his head propped up on the pillow was just too cute! He loves to be whereever we are--that's when he's happiest. He might not look like he's 'working' in this photo, but he is! He's ALWAYS at work--on 'alert' constantly for anything that he needs to 'tell' Mom or I is 'wrong'. He can sense all of these things!

Mom: Heading into Surgery on Thursday!

Hello all!

I just wanted to put out a little blog to ask for your good thoughts for my mom on Thursday the 18Th.

She's having surgery on a torn rotator cuff. She says it's from writing on the blackboard for 30 years! Way to start off your retirement Mom! haha.

Anyways, we're feeling very confident in the surgeon--he's the best of the best. Usually the procedure is an outpatient one, but since I can't exactly take care of Mom, she's going to stay overnight. She's not so good with meds (just like me) so she'll probably be pretty loopy and staying overnight seems like a good plan.

My friend of forever, Jeannine, is 'in charge' for the surgery. She's going to be taking Mom for the surgery, sitting in that dreaded surgical waiting room (the surgery is about 2 hours) and then talking to the surgeon afterwards.

In the last year and a half, Jeannine has become quite the medical expert as she deals with her mom's cancer. Any medical jargon used to be like a foreign language to her (sort of like when she starts her history talk to to me) but now she's really got this stuff down! It makes us both laugh in the midst of what is for any of us, our worst nightmare--watching our mother be terminally ill at such a young age. Jeannine continues to amaze us with her strength and perseverance, and we are very blessed that on top of everything she already has on her plate, she will be helping us out in a time of need.

I feel so confident in having her there--but it's still super hard for me not to be the one there with my mom and not to be able to go visit my mom and check in on her. Thank goodness for cell phones! I'm not so fond of the nurses on the med-surge floor after my gallbladder surgery!

Jeannine works at the hospital, so she says she'll where her badge and everyone will listen to her!

On Friday morning, my Dad and Abbie will be picking Mom up and bringing her home to her old lady chair (yes, she bought a lift chair to sleep in after the surgery as you can't lie down for the first few weeks).

Of course it's her right arm that she will have immobilized in a sling for 4-6 weeks! Yikes!

She's been cooking like crazy and freezing stuff. She even bought a new upright freezer to put all the food in (our other freezer was only 30 years old, the spring on the top was broken and she's hit it twice with the car!). Hopefully we won't go hungry (I swear my mom's energy goes entirely into keeping me fed!).

She's been working her way through a list a mile long of stuff to do before surgery. She's getting there. We have kids to mow the lawn, Celeste (my caregiver) will be working extra hours, Abbie offered to help me with lunches or do laundry, we hired a dog walker for Asher Dasher.

Having us both on the 'Disabled List' is going to be quite a challenge! I am hoping we can keep a sense of humor through it all, but I know we are both going to be just surviving each day. I'm sure the house will be a HUGE mess when it's all over with.

I'm a bit worried about Mom being able to sit still and rest without becoming frustrated with all the things she can't do. She's never had to sit still like this. She's always go, go, go. I've set her up with a stack of movies that I found used on amazon.com so she can rest in her old lady chair and watch some good movies (she doesn't have a DVD player yet, so I had to hunt down some VHS tapes--super fun because you can find them for as little a a penny a piece!).

Still, Mom has done an amazing job thinking ahead and preparing for the surgery (would a Jewish mommy do it any other way? :)) so we hope that she has anticipated many of her needs in advance--such as stocking up on pull-on pants, zip or button tops, and the greatest slippers from my cousin.

I hope my mom can sit still and just 'be' for a bit. She needs the down time. But, she's also going to be using most of her energy for ADL's and PT.

I wish I could be of more help to her, as she's done nothing but take care of me for the past nine years! I keep telling her she's going to be Ms. Grumpy and she's saying, "Yes, I will!" Uh-oh!

Anyways, that's the scoop from our crazy little world. Nothing like an adventure.

Please keep my Mom in your thoughts and prayers on Thursday for the surgery, as well as for a a speedy and not-too-painful recovery process.

Blessings,

Emily

17 steps, Meeting Jenn, and Dr. Y.

Here are pictures of me and Jenn! And one with her mom, Linda, too! We 'hung out' at the doctor's office (I was there almost 4 hours), so we did get some chat time in.

Meeting Jenn was a really special experience, as it is so rare to have the opportunity to meet the folks I have become friends with online.

Jenn and I chatted in the waiting room and she also sat in on my appointment so that we would be able to discuss and process my decision afterwards. She gave so much time and energy to be there with me. In the end, although I chose not to follow Dr. Y's treatment plan, having Jenn there for the appointment helped us to better process the decision together. She was able to see firsthand why I made my decision.

Here's the lowdown on the alternative doctor.

First, I never thought to ask if the office was handicapped accessible. I just assumed it was. As it turns out, I had to climb 17 very steep steps to get to the office (which was upstairs and not air-conditioned! Hot, hot, hot!). Now, I have not climbed more than a couple of stairs at a time in at least 3 years. As it turns out climbing these steps was another testament to the fact that things are getting better for me physically (although, I can't say I want to climb steps again anytime soon!)

The appointment itself is difficult to describe. Dr. Y uses a form of testing and treatment that is completely different from any traditional medical model. I did not 'click' with Dr. Y at all, and found the appointment disappointing. We came home with his protocol and the 'remedies' he uses, but in my gut I was feeling very uneasy about the whole thing.

The following day, when I had such a great appointment with Dr. Lyme, I felt that I had my answer. As Jenn later said, I did get a black and white answer--God showed me that I needed and wanted to stay the course of allopathic medicine.

At this point, traditional medicine is not failing me. It is finally actually working for me. And I feel so great about Dr. Lyme and Dr. ANS that I don't want to give that up.

I am always, always open to finding ways to include both allopathic and alternative medicine into my treatment (and do use both), but I was not ready or willing to follow Dr. Y's path, which would require leaving behind the allopathic treatments that are working for me.

If I had seen Dr. Y on my own, without Jenn there and without having known her positive experience with him, my answer would have been immediately clear: This was not my path.

However, knowing her success with him and her positive experience I was left with my head absolutely spinning, which took several days for me to resolve emotionally. I could not reconcile the Dr. Y that I saw with the Dr. Y that she sees. He was very 'off' at my appointment, not answering questions, etc.

I was most afraid of telling Jenn that seeing Dr. Y was not my path. When I called her though, she immediately said that God had given me a clear answer that day. Dr. Y was 'off' (and she was actually very frustrated and disappointed with him). Dr. Lyme was 'on' and 'up' and positive.

The path I am on is working and I want to stay the course. That was the ultimate decision. And the blessing in this all, was that Jenn supported my path 100%. She said she knew the moment I walked out of Dr. Y's office that I would not choose that path.

I continue to search for ways to blend allopathic and alternative medicine. But, Dr. Y wasn't my path.

I am grateful for Jenn's understanding and support of our different paths towards healing. And it felt so wonderful to give each other a zillion hugs!

Blessings,

Emily

Photos: Me with Jenn. Me with Jenn and her mom, Linda.

A 'Good Report' from Dr. Lyme

Here's a picture of me with Dr. Lyme (looking so serious!). I thought I was hanging in pretty well, considering it was Day 3 of our trip and I'd only had 5 hours of sleep the night before. Dr. Lyme looks so serious in the picture, but really he's such a warm and gentle spirit!

We had a FANTASTIC appointment with Dr. Lyme. I wish I had written this blog when the appointment and the excitement of it was fresher in my mind (and before I had increased my Lyme meds and am feeling like crappola again!).

In summary: I got lots of 'A's' from Dr. Lyme: for progress, for my neatly organized med lists, etc.

He was so 'on' at during the appointment. When I walked in he was so excited to see me up and moving about.

I first saw Dr. Lyme in November 2005, and this was our first trip back to see him since then. I've been communicating with him by phone consults.

During our first visit, Dr. Lyme was very shy, quiet and reserved. He is also very, very cautious. I remember him telling me on the phone after my first appointment that he would not treat me for Lyme disease unless he felt sure that I had it because he did not want to put me through treatment unnecessarily, especially since he did not know how much better (if at all) I could get.

So, to see his excitment at this appointment was REALLY encouraging for all of us--Mom, Dad and I. Dr. Lyme tends to be more of a realist/pessimist compared to Dr. ANS who is always Mr. Upbeat.

I'm not sure what prompted Dr. Lyme to say this, but shortly after we started the appointment he commented that I should go to MPH school and then to medical school. He had it all figured out: go to Dartmouth where they have a one year MPH program and then go to medical school. He was pretty excited about the thought of someone following in his footsteps.

I asked him: "Would you really go into medicince again if you had to do it over again, given the state of healthcare today?"

He said, "Yes, I have not regrets. I would do it again in a heartbeat."

We had some more discussion on the state of healthcare and he realized my passion for it, continuing to encourage me to go to school.

Our discussion made me realize how patient-centered, ethical, and moral Dr. Lyme is. I realized how safe I felt in his care. Even with all of the witch-hunting going on after Lyme doctors he would still do this? I was amazed.

After he brought up medical school a couple more times, I sat up (I was lying down for much of the appointment) and looked him right in the eyes and said: "Dr. Lyme, is it really realistic to think that I could get that much better and go to MPH and medical school?"

He said, "Yes. That should be our goal."

I am still blown away by this thought. That I could really get that much better. That he was so sure and so confident. He doens't say things he doesn't think might happen. He doesn't make empty promises. He's realistic and honest.

When I came home from the trip I felt joy and amazement that we had this much hope to go on, but also a bit overwhelmed and unsure of whether or not I could really get that much better.

Only time will tell.

The outcome of the appointment and treatment decisions:

We are going to 'stay the course' on the meds I am currently taking, continuing to gradually increase all three of them as much as possible. I am currently doing triple therapy of Minocycline, Malarone, and Plaquenil. I've just increased the Minocyline this week.

We are 'stayng this course' because it is working.

If I begin to plateau or slide backwards, then we will try something new, but it doesn't make sense to change course while things seem to be working.

I am still on very small doses of all of the meds, and even if these medications 'fail', Dr. Lyme assured us that we have many more options to try. Very reassuring!

Asking if he could curse in front of us, Dr. Lyme commented that I was still on a 'shitload' of other medications. It was hilarious! But, we agree that all of the medications are reasonable and necessary choices.

We discussed my problems with reading and that I am still unable to read (which he noted would be a serious problem for medical school) and I may look into some sort of eye therapy--such as vestibular therapy or optometric therapy. I've been hoping that as I improve, my reading will gradually come back, but Dr. Lyme noted that we can actually become deconditioned and need to retrain the eyes and brain.

We retested for Lyme disease and other tick-borne illnesses. Right now we are treating me for Babesia, but I haven't yet had a positive test.

So, that's the 'doctor report'.
Thanks for your patience in waiting for this blog! So many of you said you were anxious to hear the update but were waiting for me to blog. I will blog next about meeting Jenn and the alternative doctor.

I came home feeling so pleased with the trip and Dr. Lyme's enthusiasm. When I said I was taking 1/4 mile walks he was so excited as if I was running marathons!

I've searched so long and so hard for answers. I've searched so long to find doctors who trust me and whom I trust. I feel so incredibly grateful to be held in the palms of Dr. Lyme and Dr. ANS's hands. I am so blessed. I am so grateful to feel that we finally have the right diagnosis and can really work on treating it now.

Blessings,

Emily

Home Sweet Home (Back from our Trip)

Aahhhh, nothing like the mountains and scenery in this part of the country! Although, I have to admit that I did not see much of ANY of it! These two pictures were taken during our lunch break/rest stop on the way to the appointments. I missed most of the really pretty scenery, only vaguely recalling my parents saying, "Oh isn't this gorgeous here?" "Oh this is really pretty." "The trees are changing a lot here." Oh well!

Many of you have emailed or called saying you are anxiously awaiting a blog report on the trip so that I won't have to write it out several times over! So, here it goes. I think it will be in three parts. A bit today, just to let you know we are home and the trip went remarkably well.

We were able to rent the car we requested, a Subaru Tribeca, and I was able to lie in the back seat part of the time and sleep and then switch to the front seat and recline and sleep a bit more. My pain was manageable. I NEVER sleep in the car usually because I am in so much pain. I admit that I was absolutely dreading the car ride, dreading trying to sleep in the hotel room, and dreading the consequences of the trip upon our return home.

I am THRILLED to report that the car ride went really well and the Tribeca was GREAT. I slept much of the trip. The hardest part is, of course, getting home...and just as we were nearing home a traffic accident resulted in a HUGE back up for several miles. We lucked out and found a turn around on the interstate (for emergency vehicles only), broke the law and did a turn around there and made it home! Otherwise we would have been sitting there for hours.

Our hotel worked out splendiferously--it was clean, quiet, comfortable and each room had microwaves and refrigerators. This meant that I could have my heated slippers, my ice packs, and all of my gluten-free, dairy-free food. The beds were even comfy! And I SLEPT!

We left on Wednesday, saw the alternative practitioner on Thursday, and then on Friday we saw Dr. Lyme in the morning and drove straight home after that appointment.

No matter how tired I am I never fall asleep before 2 am, so I was going on 5 hours of sleep Friday morning when we saw Dr. Lyme, but I still DID IT. Then, I was able to sleep a good part of the ride home.

The whole experience was so different than our last trip there in November of 2005.

On Saturday, after another good night's sleep, I woke up at my usual time, got dressed, ate lunch, and had a fairly 'normal' day. Although I've been a bit tired I have had virtually no 'recovery' time.

My mom's eyes have been bugging out of her face at the energy I have had upon return from such a long trip--which was both physically and emotionally grueling.

Normally my ANS would 'freak out' from being overtired and I wouldn't sleep, or be able to do anything. This has not been the case this time around. More than any words a doctor could say or any other opinion, this experience seems to be a testament to the improvements I am making.

So, now we're back home safe and sound. I'm thankful for the fact that my dad drove so safely while I was sleeping in the back seat unbuckled! I am thankful for the fact that both of my parents could go--and that I slept through most of the talking! Or, blocked it out with my ear buds! We did have a few 'navigation disagreements', but otherwise, the trip went incredibly smoothly. I am thankful to my mom for taking care of all of my food needs, helping me pack, unpack, etc. etc. I am thankful to Abbie for taking such good care of Asher Dasher.

I'm almost wishing I was back in that hotel room--where there were no piles calling my name, no phone calls to be made, no emails to respond to, and no never-ending list of things to do! UGH.

So, that's the scoop on the trip itself. Next up: The appointments!

Photos: Scenery during our lunch break. Pictures of me with Dad and Mom (me with some serious bedhead from sleeping in the car!).