foodfoodbodybody

1.14 MILES! and Other Good Things

Yesterday I felt a real corner-turning. Mr. McBody asked me (as he always does) if I wanted him to bring me a cup of coffee. Just last week I was having to drink coffee out of a straw because it really hurt to drink it sitting up.

But yesterday, I felt like, I want to get my own coffee! So I went downstairs and did just that. And it was a little twingey but it didn’t take everything out of me like it had in the past. He went to work and I came back and surveyed my little bedside kingdom. WHAT A FREAKING MESS.

For the past 7 weeks, I have only strayed from this spot to go to another bed, or to the living room sofa. People have visited or mailed me nice stuff, and I looked at it let it drop from my hand and then it just… sort of… accumulated. Lots of books. And cards and stuff. My bedside table was a mountain of medicines, bendy straws, and goodness knows what else. I spent most of the morning sorting it out and getting down to a clean(er) surface.

That felt so much better. (I didn’t get to ALL the stuff on the floor, but that’s another task for this weekend ;-)) But it was such a great thing to feel like I could do– SOMETHING. Like I could do anything. I spent the afternoon getting caught up on my physical therapy charting from MONTHS ago that I had just… abandoned. By nighttime I got an email from the QA person at my office saying that things were finally looking “pretty clean.” HIGH FIVE. I just have not had the mental acuity to really focus on this stuff, either from pain or drugged state or both. It felt really good to get that done.

Today I wanted to get out of the house. I was getting tired of just going up and down my little street, so Mr. McBody drove me up to the park near our house (it’s a STEEP HILL getting there, so walking there did not quite seem do-able yet). I was so happy to be on my familiar home trail.

We decided we’d go 15 miles or to the “first bench” or which ever came first. Turned out it was all at the same time. By the time we got to the bench, it was just a little over half a mile. It was a very nice place to lay down and rest. Thanks to Chuck Conlin. (see plaque)

When we got back to the parking lot, my Runkeeper said we’d gone 1.14 miles. This was so much better than I’d thought. My neck and arm were achey (I’d say about 3-4 on the Pain Scale) and I was tired, but it felt worth it.

Now I’m lying down again. But I feel really good about that walk. It’s real progress!

Last night my PT buddy came over and did some reflex and muscle testing. They’re definitely still problematic on the right side, but how much is the question. We will talk with the doctor again on Monday. My current thinking is to push it out another two weeks and hope for even more improvement.

And now… a nap. 😉

November 9, 2013 5

Two Steps Forward, One Step Back

I was feeling pretty pleased with myself when I went for that walk on Monday. Yeah! I thought. I’m finally getting out there! So yesterday I had a lovely visit with my friend Mara. She brought me delicious fish tacos and I made the big step to actually enjoy a meal at the kitchen table. I didn’t rush through it. We just kinda hung out, and ate and talked, and it was so NORMAL!

Then I felt like I had to lie down. So I lay down on the couch and we visited some more, and then a guy came to show us some hardwood floor samples (a little renovation coming up) and I got up to inspect those. Then she was going to leave and I asked if she wanted to walk down the street with me. I was, again, feeling all superconfident and maybe a little bit show-offish (LOOK I CAN WALK DOWN THE STREET!) so we went to the end of the block. I stopped to admire my mom’s persimmon tree in the front yard. And then it kinda hit me. You know that feeling you have when you’ve gone just a bit too far?

FIRST EVER persimmons on my mom's tree! — FIRST EVER persimmons on my mom’s tree!

I went right to bed after she left, and applied major ice package to my back. But I realized, as the hours went on, that I had really overdone it. DAMN. I mean come on. Shower, dress, eat lunch, one-block walk. Too much? Apparently so. It plagued me the rest of the evening and I was back to my regular painkiller dose. Bleah.

Today I’m taking it easier. Sigh. I’m so very tired of taking it easy. Luckily, I have plenty of work to keep me occupied.

Yesterday morning I was feeling so optimistic, like, maybe I could avoid the surgery altogether. I know. I’ve been through this before. Yes. No. I don’t know.

The surgeon returns from vacation on Monday and then we will do the big reevaluation. But I’m saying, where I’m at now (physically) is not where I want to be.

I’ve been thinking a lot about tracking. Tracking (ie writing everything down) is a very big deal in Weight Watchers land. It gives so much INFORMATION and history and a way to really understand our situation. I admit I have not been tracking my food input very much. Basically, I’ve been eating whatever I can deal with, which is often not very much.

But I’ve been keeping a medicine and pain tracker. And it has been encouraging to see that I am much, much better than I was a month ago. It’s hard to remember this when I get impatient and bored and chomping at the bit. I’m definitely much better off. Just not where I ultimately want to be.

November 6, 2013 5

Ambulatory!

News flash: I just walked down the street and back! Super weak and shaky, hanging on my sweetie’s arm, but I did it and it wasn’t so bad. This is improvement!

November 4, 2013 14

ThinkingThinkingThinking

Lying around like this gives a lot of opportunity for thought. I’ve been reading, thinking, meditating, contemplating. Sometimes whining and complaining. A few things I’ve been thinking about lately have been:

What’s worth it? In Weight Watchers, we often consider our choices in terms of deciding whether something is “worth it” or not. Is that donut or piece of chocolate worth it? Sometimes it is. Sometimes it isn’t. There aren’t hard and fast rules for these things. And I’m finding that the same question comes up for me regarding being up and active during the day. Is it worth it to take a shower? To spend those precious upright minutes in that way? Knowing I’ll have to pay for it later? I didn’t shower Friday or Saturday. I was resting relatively comfortably and I just did not want to break it by getting up and “blowing it.” But by Saturday evening, I was soooooo depressed by feeling grungy and unshowered. So by Sunday morning, it was MORE than “worth it” to get up, take a shower, put on clothes and dry my hair. I ended up lying on my ice pack, medicated up again, but it was worth it to me. I needed that shower.
I think I’m getting better, because I am much more aware of being bored/restless. For much of the past several weeks, it was more of a matter of survival/getting through the next several hours. Now I’m a lot more aware of being bored and antsy. I want to get OUT of here. I want to DO stuff.
How good is good enough? I think I am definitely improving, but I am also definitely nowhere near better. I think this means that surgery is coming. Maybe next week. I hate not knowing. But I also know that this “plateau” is not where I want to be.
I MISS THAT LIFE OUT THERE. This weekend, seeing so many of my friends/heroes doing the New York City Marathon, other half marathons, etc., I was just longing to be out there with them in any capacity. I am really hoping I can at least complete a 5k (walking! anything!) before this year is up. That is my new goal.

November 4, 2013 5

Overdoing It, Newly Defined

It used to be that “overdoing it” meant trying to do an Olympic distance rather than a sprint triathlon. Or doing a half marathon instead of a 5k. I never would have dreamed that “overdoing it” could mean sitting on the couch for an hour. But that’s what happened yesterday. I had what felt like the most modest of days.

I took a shower, got dressed and dried my hair.
I had two visits. I sat kind of propped up on the couch.
I sat up for dinner (total time = 10 minutes).

I didn’t feel like I was pushing it too much. But apparently it was. Apparently I can’t even lounge on the couch without paying a steep price. I’m back to my previous pain medication schedule. I have zinging, burning pains in my forearm and the hot-poker stabbing sensation between my shoulder blade and my neck. It really hurts to try and use a utensil, a pen, a toothbrush. (bending my neck + using my right arm is not a good combination) My stomach is feeling funky.

I’m discouraged. I’ve been trying to take it easy, really I have. But even the smallest of things, what feel like NOTHING, is still Too Much.

Wah.

I have been reading Jennette Fulda’s memoir, Chocolate & Vicodin, about her years-long battle with a terrible headache that would not go away. I am feeling like there is someone out there who understands. She started by thinking it would go away in a few hours, and then a few days. Starting with over-the-counter meds, then prescription meds, and injections, and MRIs and neurologists and acupuncturists, massage therapists and more. I turn the pages and I keep murmuring, I know. I KNOW.

I am back to wanting the surgery. And thinking, if it doesn’t work, I just don’t know what I will do. But I will take that as it comes.

In the meantime, I’ll be trying another Alternative Treatment this afternoon. We shall see.

October 31, 2013 8

Step by Step

So until this afternoon, I was mentally trying to prepare for surgery tomorrow. But things have been changing. I have been getting progressively better since Sunday (2-3 days ago). Whereas last week I was desperately gulping down painkillers every 3-4 hours, I am now down to about two a day. HUGE difference. I am now going long periods of time without having to lie on ice packs. I am relatively comfortable in a flat position. This is all good. But I am still only able to tolerate being up (above a 45 degree angle) for about 10 or 15 minutes at a time. That means a quick shower, lie down and rest, getting dressed, lie down and rest, then another quick blowdry of my hair. Then painkillers.

Still, it is way better than last week. A week ago, I was getting intravenous morphine in the ER and even at 3-4 doses, when I was almost unconscious, I still had level 6-7 pain. That was bad. It was so bad. I am so thankful to not be there anymore.

The surgeon called earlier this evening and we had a good long talk. I really like this guy. He is so thoughtful, and reasonable and smart.

We decided to postpone the surgery for another two weeks and then re-evaluate.

He said I might just keep getting better until I am ALL better. He also said I might plateau at a certain point and when that happens, I am just going to have to see if that is at an acceptable place. For example, if I were to plateau where I am right now, this would NOT be acceptable. As comfortable and improved as I am, I am not about to live the rest of my life lying on my back.

I’ve been feeling great empathy/solidarity with Frida Kahlo these days. And inspiration and awe. Especially images like this. If she can paint, I can write.

I feel like I bought a little more time. To see how things go. I am feeling a lot more alert, like I can do things again. I can write. I can read and get some things done.

This is going to take a lot more patience. We asked the doctor, the difference between resting-healing and surgery, in terms of pain relief. He said the surgery would give me immediate and total relief because the nerve would not be getting squeezed anymore.

What about a chance of relapse if I don’t get the surgery? There’s a 30% chance of relapse (in the next year or two), just because the nerve doesn’t have as much space as it did before the disc ruptured. That sure doesn’t sound like fun. Just saying: if I DO have a relapse of this experience, I’m getting that surgery lickety split. No question.

So I’m back in wait and see mode. I am feeling…. mostly good about this. I have to admit some degree of disappointment because I was getting pretty darn excited about the IMMEDIATE AND TOTAL PAIN RELIEF. But I also know there is are risks with any spinal surgery.

Patience. Patience. I’m learning so much about patience. And again, letting go.

I let go of the Grotto reading at LitCrawl. I let go of our grand 25th anniversary trip to San Miguel de Allende (sob!).

Next up on my calendar is the Adoption Policy & Reform Collaborative Conference in Minneapolis in two weeks. I am scheduled to speak on a panel and perform. I want to do this SO BADLY. For so many big, big reasons. If I did do the surgery tomorrow, chances are I’d be recuperated enough to fully participate. But doing this the nonsurgical route, I am not so sure. It makes it much less likely. I am going to wait until the very last minute to decide. It could just be one more in a long list of letting-gos.

I’m also learning so much about kindness. I’ve been astounded and overwhelmed at the level of support and encouragement coming my way. Lovely gestures of caring and friendship. Today I had three visitors. One friend brought me this fabulous ice pack contraption. And a “happy skeleton” cookie.

Another friend brought some beautiful orchids and my favorite clam chowder from Sam’s Chowder House. I’ve been feeling very, very loved and cared about. Which has been humbling and sometimes enough to make me cry.

I’m mostly feeling a lot of gratitude. A LOT. To all the people who have left me sweet comments and words of support on Facebook, who have texted and sent cards and stuff to cheer me up. Who have brought food to my family, and visited me when I am able, and who have understood when I am unable. Who have listened, who have supported Mr. McB who has really been worn down to a nub by all of this. Who have filled in for me at work. Who have tracked this whole weird journey and just been so nice. Thank you.

Thank you so much.

October 29, 2013 11

Side Effects

Three times now since this all began, I’ve had wild hopes for various medications that initially feel awesome, and then after 12 or 24 hours, suddenly turn on me with mad ferocity. The first one was a patch that gave incredible blessed relief for a day or so. It knocked me out and I was able to sleep comfortably for the first time in weeks. I was so grateful. But the next day, I was overcome with vomiting which began a bad spiral of dehydration and misery. Stopped that.

The second one, I was thrilled at first. It seemed to give complete pain control AND I was alert (maybe even a little buzzed/hyper). I thought, wow, I can actually FUNCTION on this one! Maybe I could even get some stuff done! But by the second day, it had bizarro psychological symptoms that made me feel like a bona fide insane person. I was hysterical, paranoid, fearful and just living some kind of nightmare (and having bad nightmares when I slept, on top of it). That one went into the trash.

This past week, I tried a new medication that came highly recommended from a physician friend for whom it has worked wonders. My neurosurgeon also recommended and wrote me a prescription on Thursday. I tried it out and felt AWESOME on Friday. I was up and about for much longer than my normal tolerance (normal = I can be upright for about 5 minutes before the red hot poker stabbing thing begins, and on Friday I was able to have an entire meal sitting up). I felt great. GREAT. I was so excited.

But then 2am on Saturday morning, the side-effect hell began. Splitting headache. I felt like my eyeballs were going to explode. Nausea. More vomiting. And uncontrollable, out of control weeping. I was, as they say, a hot mess. Despair.

It took all day Saturday and Saturday evening to detox and let that stuff leave my system. Finally today, I am back to baseline. Tired, pain when I get up, but as long as I remain horizontal, I am relatively okay. I took a little field trip to the hospital this morning to get my pre-op testing done (blood, urine, EKG). It wiped me out. But now I am back in my cozy bed, able to eat a little of my favorite toast and yogurt.

I am so ready for this surgery. It’s definitely a go. 3:00pm Wednesday. If you’re interested in the details: a posterior cervical laminotomy at C5-6 and C6-7. It’s going to be done arthroscopically, which I am uber excited about. A small incision. Just done through a little tube, with microscopic tools. I have utter confidence in the neurosurgeon and I feel like it is the very best option I could have hoped for.

I’m estimating that I have lost about 15-20 lbs of muscle mass since this began. I absolutely CANNOT WAIT to begin my rehab, to start gaining my strength back, to be back in the world. I am hoping that by next week at this time, I will be well started on my way back. I couldn’t be more ready.

October 27, 2013 7

Second Opinion

A lot of people know that I had a neurosurgeon appointment this afternoon. I’m blogging about it here rather than repeat the story every time someone asks, “How was your appointment?”

In a word, it was good. It was hopeful. I feel like there is light at the end of this tunnel.

I liked this doctor very much, and so did Mr. McBody. (for the record, we’ve liked ALL of them so far) He said, there is a chance it might improve on its own. There is a chance you could get through this without surgery. But there is also a chance that this very painful and unbearable condition could go on much longer.

He described a few possible surgical procedures that will most likely bring great relief. One of which was not discussed previously. I’m not going to go into great detail here because … well, I just don’t want to. I feel like I want to make this decision together with this surgeon, my own self and with Mr. McBody. The options that he laid out made good sense to me and I am comfortable with them. I am going to research more over the weekend and give it some thought. I’ll say more when we know for sure what’s going to happen.

We are going to try and put one of these surgeries on the calendar for next week (probably Wednesday). But this depends on getting authorization from my insurance company, and getting onto the calendar at the hospital, and all that. A lot of things need to come together.

I also got a new medication that could possible alleviate some of the dreadful nerve pain. Cross my fingers, it could help. I started it tonight and we shall see.

The plan is to lay low, keep it unstressed and comfortable, and re-evaluate on Monday or Tuesday. If it feels the same or worse and it gets approved, we will go ahead and try to do the surgery midweek. But if it feels better… then we might wait a while longer. Wait another week or two and see if it might continue getting better. Maybe the surgery can be avoided.

So that’s the plan. I’m laying low. I’m crossing all the digits. I’m packing on the ice and continuing to do all I can in the supine position.

But I feel happy that there’s a plan. It makes sense. I’m ready for whatever comes next. I feel…. hopeful.

October 25, 2013 13

My Rock and my Pillow

It is no exaggeration when I say that there is no way I could have survived this past month without my Mr. McBody. He has been my advocate, my companion, my comfort, my nurse. He has cleaned up my messes and held my hand. He has woken up every 4 hours with me at night (sometimes more than that) and helped me keep track of the myriad of medications I’ve needed for all the things that have gone awry in my body. He brings me food and water. Extra blankets and socks for my feet.

He sits next to me and reads me the New Yorker. Including finding me cartoons he thinks I will find amusing.

Nothing has given greater meaning to the words “for better for worse, in sickness and in health” than this past month.

He has seen me through a lot before – but other than high-risk pregnancies, this is probably the longest lasting and most intense and enduring conditions he has ever had to see me through.

He takes care of me in every way imaginable but mostly he is my friend. He stays by my side. He has taken a leave from work so that he could be with me. This means more to me than words could ever say. It is the most precious 25th anniversary gift ever, more than any diamond in the world, more than the trip we were supposed to take. He holds my hand in the waiting room. He is with me. For better and for worse.

October 24, 2013 11

eat, move, think, feel