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.