The Daily Infusion

Seems I'm getting into some sort of once a week blogging groove to mark how many weeks I'm on treatment. So, for those of us counting, it's nine weeks on Tuesday.

Since my home nurse comes every Monday, that serves as a reminder that I've made it through another week of treatment. Interestingly I had a different home care nurse today (Monica is on vacation), and she had quite a bit of experience with Lyme disease patients. During only seven months working as a home care nurse in New York she had SIX chronic Lyme patients on her caseload. Most of them were on Rocephin along with a combination of other medications. This means that all six of them were too sick to go to an infusion center for their port maintenance, just as I am. It's maddening to me that the IDSA (Infectious Disease Society of America) still fails to recognize Chronic Lyme as 'real'.

I started this post a while back in an effort to continue explaining how the port and antibiotic therapy works.

First, we get everything ready: Saline, the antibiotic (Rocephin) and Heparin. Mom and I have our division of labor worked out quite well!

I get an infusion every day around 11 AM.

Here's mom making sure there are no bubbles in the saline syringe.

In the earlier post I showed how the port is accessed at all times. This means that I have a little 'pigtail' hanging from the site with a catheter on it. So the syringes just screw on to the blue piece in the photo above and with a push what is in them goes directly into my system.

The order of administration is SASH: a Saline flush, then the Antibiotic (over a five minute period), another Saline flush, and then a dose of Heparin to help keep the line clear.

Asher, always the helper, supervises everything. We were afraid he would be anxious about the appearance of so much medical 'stuff' like he was in 2005, but so far he's been attentive without being overly anxious.

At the end we have a lot of waste! Ugh.

Hope this helps a little in picturing the medical side of things.

Blessings,

Emily

Photos: The saline, antibiotic, and heparin ready for my infusion; Mom getting the bubbles out of the saline flush (this is usually my job--bubble monitor!); Asher supervising; a mess of medical stuff.

Eight Weeks, Eight Lights

When you receive this blog post Tuesday morning I will have completed 8 weeks of treatment.

Tonight we are halfway through the 8 nights of Hanukkah.

I love the Hanukkah prayers, the Hanukkah Lights special on NPR, my Western Wind Hanukkah CD, my Hanukkah music, and lighting the candles on these dreary, cold winter days. This year, however, I seemed to take special notice of one of the prayers, said only on the first night of Hanukkah:

Blessed are Thou O Lord, our God, Kind of the Universe, who has kept us in life and enabled us to reach this day.

Every morning when I wake up I say the prayer:

I gratefully thank You O Gracious One for restoring my soul to me.

Because even during these really hard days, I do feel this gratitude. I love the quote from my Lyme doctor: "Where there is life, there is hope."

I had a particularly bad day today and it's impossible to know why exactly today was extra bad. After needing to spend the entire day resting, sleeping, surviving I said to Mom: "I'm going to change how I phrase things. Do you know what I did today?"

"What did you do today?" she said.

"I rested and took care of myself. I did what I needed to do for healing."

"Asher, did you hear that?!" she exclaimed. "Did you hear what she said? She rested and took care of herself. Yeah! That is a BIG change." Asher, of course, started jumping up and down like there might be something for him in this all.

Typically I might say, "I did nothing today." or "I was lazy today." or "I didn't get anything done today."

On Sunday Catie came for my weekly bodywork session with her. She had read my previous blog on 'Staying in Touch' brought over a piece of paper with an affirmation for chronic illness, which I have displayed where I view it often: "I am willing to change and grow. I now create a safe, new future."

As hard as this is, as miserable as the days are right now, I feel a hopefulness that this will be worth it. I can only rest in knowing I have made a decision with which I feel at peace, and hope the rest will come out okay. I do feel that during this treatment a lot will change within me--physically, emotionally, and spiritually.

I asked Mom if she had hope this time around that this treatment might work. She gave an affirmative, "Yes."

So it is at this Hanukkah season that I find myself needing the lights on dark nights and the stories of the Jewish people who continue to survive against all odds.

And now, it's time for me to get back to resting and healing.

Happy Hanukkah!

Blessings,

Emily

Photos: Have you noticed the lack of photos lately? It's a sure sign that I'm not feeling well that my camera sits untouched. I took some pictures earlier on in treatment that I have yet to use, so that will help things out a bit!

Staying In Touch While I'm In My Tortoise Shell

I've been desperately struggling with how to address one of my biggest sources of stress these days: how to keep in touch with those I love. The brain fog never lifts long enough anymore for me to truly write blog posts that I think make much sense, so I hope you'll bear with me as I try to communicate with you how much you mean to me! I know I repeat things sometimes when I'm brain-fogged or don't say them quite right, but I really needed to write this to you.

I'm writing this post because it's so important to me to let you know how much I care about you and your lives. I've struggled with finding the 'right' words, but have opted instead to write a vulnerable, heartfelt, authentic, and fairly unedited post.

As most of you know, I'm a people person. I love to have long conversations (email, phone or otherwise) about all sorts of things. Being engaged with others has always been a source of energy for me. I've never been good at having lots of alone time. Now I don't have a choice. I'm too tired and exhausted to do anything but rest.

Yet here I am with this illness that is incredibly isolating and lonely. Since starting the IV antibiotics the struggles with isolation and loneliness have only been intensified.

As the treatment progresses, I continue to have less and less strength and energy. Needing and desperately wanting to reach out to others is trumped every day by the physical demands of treatment. In the coming months (probably 10 more at least!), I know that the demands on my physical body to fight the Lyme will only become greater.

I spend a lot of energy right now worrying and stressing about the fact that I'm not able to keep in touch with folks. How does one deal with having to let go of so much because of the physical demands of treatment? How does one learn to fully receive? How does one let go of guilt and frustration and fear and replace it with only love? How does one stop feeling that being sick is selfish? What's too much to ask of those we love? How long can I keep asking people to stay the course with me?

I know I need to be processing things, talking things through, etc. yet I literally do not have the energy.

What I'm learning a lot about right now is letting go, trusting that people will be there a year from now when the worst of this is over. I'm not very good at these things. I never feel like I'm 'enough' to others, I feel guilty about my illness. I spend way to much time apologizing for not being well enough to keep in touch, help out, or whatever else I perceive those I love need. I apologize to my mom daily for something I feel I guilty about as the result of being sick. Nurturing relationships is one of the things I actually feel like I'm good at and that I can give to this world.

The lessons I'm learning right now are often more challenging than the daily physical demands of treatment. One thing I know for sure is that I am going to emerge from this experience having gone through some serious personal growth! And yes, I see the opportunities and the irony in all of what's going on to challenge me in big ways spiritually!

So for now, one of my biggest lessons is learning to let go and trust in a more complete and vulnerable way than ever before.

Your news and photos from the outside world--in the form of emails, snail mail, texts or FB--often gets me through my days. I get back from another grueling doctor's appointment or wake up from a fitful sleep and find news in my inbox. It pulls me out of my small world of illness into your world. It brings me into your life and keeps me connected to you. Even the shortest little hello can change my perspective on a day.

The time you take to connect with me is such a gift and I don't know how to ever express how much it means to me. I'm writing this post with the intention of letting you know how much your news means to me, not as a way to make you feel pressured or obligated to keep in touch. I just need you to know how much your world matters to me.

Because I can no longer write much in terms of emails, I'm asking you to trust that when I respond to your email with "Thank you!!!!" or "I really appreciate you sharing what's going on with you." (Yes, I want the good and the bad), I'm not being short or dismissive. I'm heartfelt in my response. I'm letting you know I've read your email and it's been received with so much love. I'm letting you know I probably printed it and read it over multiple times (since it's getting so hard to look at the computer screen these days). Hey, I've always wanted to learn brevity--maybe this will be my year. I so admire people who can say one sentence with such POW! they sum everything up! And if you don't get a response it's not in any way a sign that I'm not reading or sending thoughts your way.

I am also genuine in saying that while I cannot offer you long email support when things are tough or you need extra prayers, I want to know what is going on because I want to send love and good thoughts your way. Are you having angioplasty? Are you having a new baby? Are you feeling overwhelmed? Are you buying a new house?

At the end of this year of IVs I'll emerge from my tortoise shell still being a part of your world. I'll know some of your news and I'll have remembered it, even if I couldn't write back.

On my end, I hope so much to be able to continue blogging, but even that has become increasingly difficult. It's not the same as a true conversation in the way I love most, but at least it keeps our worlds connected to some degree. I hope to use it somewhat like a CaringBridges site, so that I can answer your questions and fill you in on what's going on and stay connected as much as possible. When I write my blogs, I often keep in mind the questions you've emailed me like: How long will treatment last? How are you feeling? How will you know it's working? So don't stop asking questions! :)

Over the last few weeks I've thought a lot about how to keep in touch (as in obsessively)--and what would be healthiest for myself and for my friendships. I have decided to get a cell phone that has a keypad for easy texting and add texting to my plan for quick check ins, so if you're a 'texter' this is a great way for me to get news when stuck in bed! The other day a friend sent the heartbeat from the ultrasound of her baby and I just about melted!

I debated getting a phone with email and FB, but then felt overwhelmed at the thought of learning how to work a new device. If a time comes when I'm ready, I might think about something like an iPod Touch which would at least be easy to hold and read emails from anywhere in the house without needing to be at the laptop. Right now though, I'm just not in that place. I'm afraid that I'll check my new gadget obsessively for mail! It's seriously tempting though...

I'm still trying to follow folks on FB as a way to see pictures and news, but may be using that silly "Like" button more than leaving comments. Now, they just need a "Dislike" button. Even keeping up with FB is getting harder though.

For much of the time I've been sick I've been able to keep up appearances, push through the fatigue and the symptoms. These days my body gives me little leeway to do so. And I need to focus my energy on what will hopefully result in significant healing.

While I continue to be at peace with the decision to do this treatment and to forge ahead as aggressively as I can, it doesn't mean it doesn't just plain suck! And not being in touch is one of the hardest things for me. Obviously I knew on some level that I wasn't going to be able to keep in touch with folks, but I was totally unprepared for the emotional angst this would cause me. In some ways I feel like I was more prepared for the physical changes.

Thank you to those of you who over the years, and especially over the past seven weeks, have stayed the course with me, continue to 'get it', and sent me your heartfelt news and emails.

You are in my daily thoughts more than you will ever know. And your news is treasured more than you will ever know. I may not be the best 'pray-er' but I'm great at sending love and energy and good thoughts your way.

Thank you for your continued love and support. And thanks for reading my ramblings!

Blessings,

Emily

The Port

Tuesdays are my day to count how many weeks of treatment I've been on. Today it is seven. I've been grappling with how to blog about this experience and what exactly to write about. Combined with having very little computer time each day, this has made blogging a challenge.

I want to find ways to blog about this experience because is has been so significant--physically, emotionally and spiritually--but most of the time the energy resources aren't there. Plus my brain fog is so bad that I wonder if I will be able to write anything that makes sense!

Today I wanted to share a little bit about the port. When I went in for surgery, I had some idea of what to expect but was not at all prepared for what the port would entail. First, a little 'technical' explanation of what having a port entails and then the 'emotional' side of it.

Above is a picture of a port (from Wikipedia) that gives you some idea of what was inserted under my skin.

The port is located just below my right collar bone in the left cephalic vein. The catheter goes from the left cephalic vein to the left subclavian vein and then to the superior vena cava, giving direct access to the heart.

The surgery itself went very, very well. The surgeon was thrilled (he came out to greet my parents after surgery with a big smile on his face) with the fact that the port had been placed in a smaller vein and that all had gone so smoothly.

Of course, I had asked a lot of questions before surgery about recovery and I was told I would have 'some discomfort' but could resume my normal activities within a couple of days. That was not at all the case! I had a LOT of discomfort and could not move my arm hardly at all! Plus, I had a lot of problems with near-fainting after the surgery.

The port itself is completely under the skin. However, because I am receiving infusions of antibiotics every day, the port has to be accessed at all times. This is different from say chemo, during which a person might go for a treatment and then not have the port accessed again until their next treatment.

Above is a picture of the needle, called a Huber needle that Monica places in my port weekly. It stays there for the week and then needs to be changed. As you can see, there is an external catheter through which we give my infusions. We accessed the port the day after surgery so that we could start the antibiotics.

The type of port is a Bard Mediport. For those who really want to know more about how the port is in the body, how it is accessed, etc. click here.

And here is the picture of the real thing. Me with my port. It's taken me a while to get used to the port. More and more I don't notice it as much, but at first it was a huge emotional shock.

When Monica first pulled the bandage off post-surgery, I almost fainted. I don't know what I had pictured, but when I saw the six stitches I couldn't believe how big the incision was. The port is much easier to look at without the stitches!

At first I kept looking at this foreign object sticking out from my body. I felt sick and overwhelmed by the site of it. I prayed that my body would accept and integrate this new object as part of what I needed for healing.

Thankfully, right now it's winter and no one can really see the accessed port. I'm not sure what I'll do or how I'll feel come summer, but that's too far away to worry about.

For now, I try to view the scar as the mark of a warrior, as part of what makes me who I am, as a marker of my journey. And despite its inconveniences, I'm grateful that my body seems to have accepted the port and we can easily administer the medications I need.

Blessings,

Emily

Photos: Port picture from Wikipedia; Pictures of the Huber needle kit used to access the port; Me with my accessed port.

Squirrel Watching

Those squirrels out there make Mr. Fuzzmadoodle into Mr. Loud Mouth. Oh how he wants to chase them up the tree and 'get 'em'!

They are very busy around our maple tree getting ready for winter. So squirrel watching is definitely one of Asher's favorite activities.

I really enjoy watching them too. I wish I could get a picture of one of the squirrels dangling precariously from a teeny tiny little branch.

Blessings,

Emily

Photo: Squirrel watching.

Monica Mondays

My week starts out with my home care nurse, Monica, coming on Monday mornings to deaccess and reaccess my port, as well as draw my weekly blood work. Of course she also monitors my blood pressure, lungs, and all that jazz only to remind me that my blood pressure is pathetically low these days.

Thankfully my blood work has remained fairly stable so far, my port is healing well, and staying infection-free.

I really, really lucked out with my home care nurse. She used to work on an oncology ward so she is fantastic with accessing ports. This has been good for me because I've had tenderness at the needle site if we access the same spot too many weeks in a row. She's skilled enough not to 'miss' the port, which another nurse did one week--a miserable experience.

It's fun to have a nurse come who's close to me in age so we can talk about fun and fluffy stuff like TV and where to buy cute pajamas!

When you get this post Tuesday morning, I'll be marking six weeks of IV treatment. And yes, I'm counting each and every week.

Just wanted you to meet Monica since she is now part of my 'team' and I'm incredibly lucky to have her!

I'll explain the port in more detail as I am able--and I can post a picture of it if you're not to grossed out!

Blessings,

Emily

Photo: Monica, my awesome home care nurse

Gratitude

When Mom and I discussed Thanksgiving 'plans' for this year, we both felt that what we really needed and wanted was a quiet, low-key day. I had doctor's appointments on Tuesday and Wednesday of this past week, so I was hoping to rest and have enough energy for some good food.

We had a lovely meal of local-free range roast chicken, a mixture of mashed sweet and white potatoes, fresh asparagus, spinach salad, cranberry relish and pumpkin pie! Mom was supposed to be low-key about the cooking this year, but as you can see she spent the day in the kitchen. Most exciting was the pumpkin pie--which she found a way to make dairy-free and gluten-free. Oh how I've missed pumpkin pie all of these years! I definitely broke all of the rules yesterday when it came to keeping the sugar and carb intake lower while on antibiotics.

In recent years the holidays have often been difficult for me. I feel lonely or left out. I think about things I wish I could be doing or people I wish I could be with. I think about the life I wish I had. I think a lot about marriage or family or children.

This year, none of those feelings crept into my mindset. Perhaps it was a blissfully restful night's sleep that changed my perspective? Or just the slight break from the relentless symptoms I've been having? As far as days go lately, and remember things are all relative here, Thanksgiving day was a 'good' day.

Instead of feelings of sadness, I spent the day filled with a peaceful spirit, a quiet mind, and a grateful heart.

In my eyes, our Thanksgiving was perfect. I let go of a lot of expectations to feel that way. I slept in. I wore a new pair of pajamas from a friend who sent them in honor of The Year of the Pajama. I had homemade hummus for lunch. After lunch I was able to listen to the Thanksgiving music on NPR while doing a little knitting--something I rarely feel up to doing these days. I called Dad. I took a nap. We had our lovely dinner, which also included a sip of champagne (Whoa Alcohol!). Then we crawled into my bed and watched two episodes of our favorite comedy, The Big Bang Theory.

During dinner Mom and I discussed the abundance of things for which we are grateful--from our home, to our cozy beds, to good food, to good doctors and medical care, to Mr. Fuzzmadoodle. Even in the midst of this treatment, I continue to have gratitude because I know that I am very fortunate to be able to try this treatment, to have access to the care I need, to have the support I need, etc. The list of things to be grateful for felt endless yesterday.

While I do believe in always maintaining a sense of gratitude, I also believe in being realistic. Some days grief, sadness, loss, anger or frustration cannot be warded off with a sense of gratitude. Just because I am grateful, doesn't mean I don't feel these other feelings. Some days this illness and everything that goes along with it just plain sucks (excuse my language). I am always grateful, but some days I may need to be grateful in a different way: for the tears, for the ability to feel sadness, or for God's grace even when I'm angry.

For a very long time I have been putting a lot of pressure on myself to always feel grateful. When I get sad, I quickly wipe the tears away and tell myself how much worse it could be, tell myself how fortunate I am to be getting this treatment, tell myself how loved and taken care of I am. Talking my way out of feeling what I'm really feeling in that moment hasn't proven healthy. I'm just stuffing too many emotions, always trying to be the 'good little sick girl.' How is it realistic or congruent to think that I can wake up every day and be the 'happy sick person'? I'm worn out trying to be that person.

This Thanksgiving was remarkably filled with gratitude in an unforced, genuine way. What I need to learn now is to be grateful for the whole spectrum of emotions I feel. Grief and gratitude can coexist, and indeed need each other to exist.

I'm grateful for the beautiful, peaceful, and quiet day I had in mind, spirit and body. I'm also accepting of the fact that many days, no matter how grateful I am, are an emotional struggle right now. No amount of gratitude erases the senses of loss or grief I feel. I'd like to be the queen of mindfulness, but I'm not quite there yet. I 'show up' every day and some days are better than others.

I hope you had a blessed Thanksgiving filled with love and gratitude. For those of you whose holiday was touched by grief, loss, or sadness may you feel peacefulness of spirit in the coming days.

Blessings,

Emily

Photos: Me in my new super cute PJs (and yes, that's a new haircut). I went in hoping to look like Natalie Teeger from Monk but came out with this haircut. It wasn't what I wanted, but I'm getting used to it. I was so sick trying to sit there long enough to get my haircut, but I also knew that I had to chop it off because bathing is so difficult right now. So, it will do just fine for what I need now. It's practical.

Mom's awesome gluten-free dairy-free pumpkin pie, made with coconut milk.

Letting Asher give me kisses.

Happy Thanksgiving!

Wishing you a warm and peaceful Thanksgiving filled with the comfort of good food and people (and pooches) you love.

Blessings,

Emily

Photo: Asher curled up after dinner in his favorite spot--the sofa ottoman.

One Month

Today I am marking one month since the start of my IV antibiotic therapy.

As you can see, Asher continues to take excellent care of me.

Other than going to the doctor (which has been happening more than I would like this month, as I also have so many other overlapping medical conditions on my plate), I've been staying in PJs and doing the best to get through each and every day.

Every day is its own victory.

Last night was the first time I really let myself cry as the gravity of the whole experience, the feelings of aloneness and missing out, the questions about whether this treatment will work or not overwhelmed me. I'm so focused on survival (emotional, physical, and spiritual) each day that most of the time when I feel teary or sad I stop myself before I start to really cry. What a huge release to cry and how much more peaceful I feel today! My ANS wasn't too happy but it was important to grieve last night.

I continue to experience intense autonomic symptoms of dizziness, weakness, fatigue, lack of concentration, tachycardia, low stamina, difficulty getting up to sit or stand, forceful heartbeats and low blood pressure. As long as we are pushing the treatment along it's likely I won't get any 'breaks' in symptoms. In other words, as my PCP said to me when I saw her last week: I feel pretty crappy!

I know my blog was so much more fun when I was taking pictures of pretty places and flowers and trees and having outings in The Rolls. The new reality is pretty hard for me to get used to.

I had hoped to blog more regularly about my experience, but my computer time has been extremely limited. Thanks for keeping up with me via Facebook and keeping your news coming to my inbox...it's hard to express how much the news from the outside world matters.

Blessings,

Emily

Photo: Cuddling with Asher.

How I'm Doing: The "New Normal"

"I'm not alright, but it's okay."

Many years ago I read this quote from a widower who never knew how to answer the question "How are you?" after his wife died. How to truthfully answer the question "How are you?" has been a perpetual problem for me, especially when I know the person really does want the truth and I don't want to be a downer.

The way this man phrased his answer has always stuck with me. I think it's perfect and a good way to describe things right now.

I've been trying to think about how to write a "How am I" post for a while now. Part of the issue is actually sorting out how I really feel.

The past two and half weeks since surgery have been full of so many changes and adjustments to a very different and new situation. In the beginning I was almost numb because I had to just get through the recovery from surgery, the first port access, learning the IV infusion techniques, figuring out how to take a bath, etc.

I'm just now starting to get a sense of a the 'new normal' (at least for now), and it's a huge adjustment from how I had been feeling over the summer.

I got my stitches out on Monday (Hooray!) and have been on the IV antibiotics for a little over two weeks now.

In many ways, I feel like I am okay. I expected this to be hard. I signed up for this. I do what I have to do each day to survive and that's pretty much all I can do. I feel at peace about my decision to try the IV antibiotics which means that I'm able to do the daily infusions without having second thoughts or panic attacks.

For the most part things have at least been 'bearable' and nothing has been too scary other than a couple of moments. I'm more used to the fact that after surgery I'll react poorly, have episodes of near-syncope, my bloodwork will be off, my BP will be crazy low, etc. so it's not as alarming as it used to be.

What's been more difficult in some regards is the fact that I have so many overlapping medical issues to manage at the same time (which includes appointments in endocrinology, neurology, gynecology, Lyme, primary care, gastroenterology, and cardiology all in less than a month). Just focusing on the Lyme treatment is overwhelming enough.

I'm not going to sugar coat though. While I feel at peace about the decision, every day is very, very hard. Some have been harder than others (an awful home care nurse experience, etc.) while others are more restful. And I'm doing this with no guarantee that putting myself through this will result in healing.

In truth, had I known how hard things were going to be or some of the challenges that would come up, I might have wanted to chicken out of doing the IVs, so I'm glad I didn't know!



My days have changed so dramatically from this summer. I am back to not feeling up to anything other than getting the necessary medical stuff done and resting. I've been in this type of place many times before, but it never gets any easier. I'm very thankful that this go around of being super sick I'm able to watch some TV--I think all I watched the week after surgery was The Martha Stewart Show! TV at least gives me some sort of 'break' from all of the stuff racing through my mind.

After surgery I couldn't use my arm to do anything, but now I'm at least able to use it. Still, I feel too exhausted and weak to talk on the phone, email, blog, listen to books on CD (unless they are at the reading level of about a 6 year old--any suggestions for favorite children's books are always welcome!). I mostly want quiet, classical music on NPR and some cuddling with Asher. As soon as I do a little too much or don't stay quiet and restful, my ANS freaks out. My standing time and sitting time have pretty much gone to the birds.

The biggest challenge each day is letting go and staying mindful. If I think ahead at all, I crumble. I have to let go of all of the expectations I put on myself to keep in touch, to get things done, to 'do more' and instead focus entirely on taking care of my medical needs. It's incredibly difficult to feel that I can only receive and have little to give. I'm so sad and afraid of missing out on your lives and the world around me. The experience is also very isolating.

On a lighter note, I've declared this The Year of the Pajama. Unless I'm heading out to one of my bazillion doctors appointments I'm wearing comfy, cute PJs every day! Favorite places or brands? Let me know!

Some days the 'new normal' seems okay. It seems worth it to at least try this treatment. Other days I wonder how I'll do this for months on end. I wonder why I'm not more of a trooper. I get angry, sad, frustrated and down. At the same time I'm filled with gratitude on so many levels. It's up and down. It's not alright, but it is okay. And it will be okay.

Blessings,

Emily

Photos: The weekend after my surgery I desperately wanted to see the fall colors. Dad took me for about a 30 minute drive on Saturday in and around our valley. Mom took me for a longer one (too long!) on Sunday in a nearby valley. Saturday was rainy and dreary, but Sunday was sunny and clear. Since I was dressed in PJs and not well enough to get in and out of the car, I had to take pictures out the window, so they aren't too great...but it was GORGEOUS.

Nearby valley--farmland and mountains; on the bypass that goes around our town; the most 'famous' mountain in our town (I know, it looks like a hill in this picture!); more of the farmland and mountains in the neighboring valley; moo cows in the neighboring valley.

Fall View

Here's the view from my recliner in my den. A golden delight!

I haven't gotten to spend too much time in this location, but when I do it's lovely.

We were so fortunate not to have any tree damage to our maple and weeping cherry tree in the front yard during the October storm.

Blessings and wishing you a good week,

Emily

Photo: View of the weeping cherry tree and maple tree from the recliner in my den.

Trick Or Treat, Smell My Feet...And Unconditional Love

Certainly no one in our house dressed for Halloween this year unless you count my pajamas as a costume, so here are pictures of some of my favorite people. Hunter and his cousin, Laura (who now lives with the 'T' family), stopped over and made my day! Poor Miss A just had her tonsils and adenoids out, so she didn't make it.

Hunter is dressed as a girl, Laura as a gypsy, and Anne came as herself. :)

On Wednesday after my infusion and lunch, Mom drove me to the T family's house to drop off a little pre-surgery gift for Miss A. I wasn't sure I wanted to even walk from the car to their door. I did. And was greeted so enthusiastically by the entire family--everyone was home!

I haven't really been out of the house since surgery except for a couple of short drives and a doctor's appointment.

I stayed for a short while at the T family home before Anne drove me home. Not only did I get to visit with the entire family--Scott, Anne, Alexandra, Hunter and Laura (whom I just met for the first time), but I also went over there in my pajamas, hair a mess, no make-up on, and probably not smelling super clean (bathing is extremely hard with the port, but more on that later).

As I've mentioned before, it's very hard for me to let people see me sick and very few people have actually seen what things really look like when I'm sick. I'm always embarrassed or afraid it will make me less lovable.

But Wednesday afternoon I realized that the entire T family loves me no matter what I look like or how I'm feeling that day. Of course, they've told me this a zillion times but I'm slow to take things in.

Maybe Miss A and I can hang out in bed and watch some TV one day since she will be home from school for ten days!

Just as I was signing in to the computer tonight to post the picture of Hunter and Alexandra, I saw this picture in my inbox. It's Nephew David! Cluck, cluck, cluck! I suppose I'm partial, but isn't he the cutest?

Hope you had a Happy Halloween!

Did any of your Trick or Treaters say Trick or Treat Smell My Feet? Our little neighbor boy said that tonight, and it was the first time I'd heard that one!

On a side note, I tried to take today just to decompress from the last couple of weeks--which has meant resting and a movie (WALL-E!). My port site is improving every day pain-wise and I'm gaining movement in my arm each day. At this point, I am pretty sure that the level of fatigue, weakness, and lousiness I'm feeling is due to the antibiotics. I do have good intentions about keeping up my blog on these topics, but it's still not quite happening!

Blessings,

Emily

Photos: Hunter and Laura stop over for a Halloween visit; David in his chicken costume.

Keeping It Real

I usually avoid having pictures taken (more or less posted!) of myself when I am at my sickest or when I don't have any make-up on. I decided to 'keep it real'. So I had Mom take a picture of me in my 'new state of being'. After all, I'm supposed to be sharing my experience authentically right?

I'm hoping, now that my arm is starting to move a little more easily that I'll be able to work on blogs in bits and pieces to update on how things are going. It's been difficult to find any energy beyond medical 'stuff' and the need to rest.

In the meantime, I think this photo pretty much sums up the first week on IV antibiotics and the recovery from surgery.

As ever, thank you for your emails, cards, flowers and most of all love and prayers.

Blessings,

Emily

Photo: Me and Asher hanging out in bed...the TiVo remote right next to me. :)

Lyme Log: Home!

Just a very quick blog to say that I am home!

The surgery went very, very well.

Now I'm just exhausted and very uncomfortable. I'm so grateful he didn't keep me overnight though, as we had thought.

Have had some Jewish Penicillin along with Anne's homemade applesauce already so that ought to help speed up the healing process. :)

Will update as soon as I am able.

Thank you for all of your good thoughts! I did my meditation CDs a zillion times over and kept you all in my 'band of allies'.

Blessings,

Emily

Earliest Snow On Record Here!

Snow-covered Pumpkin

(Pumpkins courtesy of my dad for my birthday. He even glued the stem back on this one when it fell off (so Farmer Dad of him).)

Here are some photos of history in the making today. We had the earliest recorded snowfall on record here locally, breaking a record from 1901 of snowfall on October 18th.

Of course I had to try to get some pictures with my camera. When the wet half-rain, half-snow started this morning on our way to my Rocephin shot I wasn't too excited about another cold, dreary, wet day. But as the snow turned to big white flakes and began to accumulate, I found myself just wanting to watch the snow decorating the autumn colors around the yard.

As of last check (11:00 PM it's still snowing! I hope it's still there when I wake up and head to my last shot in the morning). I think the pumpkin covered in snow sort of sums up the day.

Leaves and Snow

I hurried outside earlier in the day to take a picture of this same scene (the leaves protected from the snow by the tree above in contrast to the leaves covered in snow) thinking surely the snow wouldn't last long. But it kept snowing so I had to go back outside and get more pictures before my nap.

Snow-covered Leaf

Here are some pictures from our history-making snowfall and a little break from medical-related posts!.

More Leaves and Snow!

Redbud Tree Covered In Snow

My Burning Bush

My Burning Bush

Sedum

Grasses

Hope you have a good weekend,

Blessings,

Emily