Wednesday, November 04, 2009

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.



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.


Emily said...

THis post brought me to tears. Thank you for being so open with sharing your experience. I am heartbroken for you that the antibiotics are taking so much more away from you, but continue to pray that it will be worth it in the end!

I sent a package to you today. There was no place for me to write out a card, so if you receive a package with no name on it, it will be from me. :)

Katherine said...

Hi Emily
I have been thinking of you of course. I knew you were quiet this past week--and expected that. This is so hard on you. I hope it will bring results. You are so right that you have to try. I would do exactly the same thing.
I'm glad you are comfy enough to be up for TV. Wish I could stop by and be with you in person.