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(Getting To The) Moment of Truth

Photo credit: Steve Richey/Unsplash
Photo credit: Steve Richey/Unsplash

This weekend was such a mixed bag.  Yesterday I had that great walk in the park. Last night some good longtime friends came over and brought us a beautiful dinner. It felt so good to hang out and laugh, to eat good food and visit with friends we’ve known for decades.

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This morning I woke up feeling pretty optimistic and confident. I decided, it’s probably time I start really cutting back on the prescription painkillers I’ve been taking. Narcotics. Way less than I was at the start, but still way more than I want to be taking. I tried taking some over the counter Tylenol in hopes that I could maintain my level of comfort. We planned to go out for another little walk in the park, but it felt really different than yesterday. By the time we had driven up from our house to the parking lot (about 1/4 mile), the familiar stabbing near my shoulder blade had started up.

I took a deep breath. This is not going to get the best of me, I said. We walked maybe a total of ten minutes and at that point all I could think of was coming home and getting horizontal.

Discouraging. I gulped down my pill and lay on my back. Again.

Tomorrow the surgeon comes back. I was still hoping to get to Minneapolis on Thursday. But I think some kind of reality hit me today. When I realized that even though I am so much better than I was a month ago, I am still so far from normal.

Here is the hard truth. I still can’t:

  • work (any of my three jobs: physical therapy, writing or leading Weight Watchers meetings)
  • get through a day (0r night) without prescription pain meds
  • exercise in any meaningful way (including: Nia dance class, work out with my trainer, run, swim or ride a bicycle, lift weights or do any of the workout videos in my house)
  • carry a purse or a backpack
  • drive my car, or independently get myself anyplace outside my house
  • pick up anything heavier than a coffee cup
  • prepare meals for my family that involve more than a microwave
  • go shopping or run any errands
  • do anything that involves being upright for longer than an hour maximum

People, these are a LOT of big things on the “can’t” list. Yes, I am super happy for the progress I have made. But this has been going on too damn long. Too long. An entire season has passed by while I have been down.

The surgeon comes back tomorrow. I expect we will probably have a conversation sometime in the late afternoon or evening.

I’m ready to be done with this.

1.14 MILES! and Other Good Things

Fall has arrived in my front yard!
Fall has arrived in my front yard!

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.

bendy straw + water bottle
bendy straw + water bottle

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.

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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.

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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.

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trail sweet West Ridge 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)

This bench always makes my day.
This bench always makes my day.

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.

She had her reflex hammer in her car!
She had her reflex hammer in her car!

And now… a nap. 😉

Two Steps Forward, One Step Back

Photo credit: The Commons/Flickr
Photo credit: The Commons/Flickr

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!

 Mmmm, fish tacos!
Mmmm, fish tacos!

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.

writing it all down keeps it real
writing it all down keeps it real

 

ThinkingThinkingThinking

the view
the view

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.

Step by Step

photo credit: Chris Sardegna/Unsplash

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.

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Side Effects

IMG_1252Three 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.

Dehydration is the Devil!

free-terrible-devil-wallpaper-wallpaper_422_86164That’s a direct quote from Junior. Both of us have had a lot of miserable experience with dehydration. This used to happen with me quite a bit with longer races and it was BRUTAL. Like HERE. But somehow, I did not put all the pieces together this last week and realize that it was the same exact devil. Loss of appetite, nausea, vomiting, sudden weight loss (I was pretty much losing a pound a day and was about 10 lbs down from 2 weeks ago), weakness, just FEELING LIKE DEATH. But since I was already feeling pretty deathish due to the bedrest and neck pain, it was hard to separate it out. It all felt like a version of the same thing. I thought I was feeling bad from various painkillers. I didn’t know which end was up.

But I remember how it used to be after races. I would be literally feeling like death, and then all I needed was fluid, electrolytes, salt. Chicken soup could do wonders and it was like a miracle had occurred. Like putting a dried out old sponge into water, and soak soak soak — voila.

That’s how I feel today. It’s a miracle! I’m ALIVE!

I’m back to my “baseline” which is: fairly OK lying down, more pain when I get up, but overall alert and feeling a lot, lot, lot better. A LOT BETTER! I actually WANTED and ATE a panini sandwich that Junior made for me and it was the most delicious thing ever. I’m on the way back.

It’s amazing what 12 hours of sleep, three liters of IV fluid and some antibiotics (for my urinary tract infection) can do.

Emergency Room, aka What Awful Suckitude

(blog post title credit to Ericka Lutz)
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That’s what happened after a weekend of pain meds that didn’t work, vomiting, dehydration, low blood pressure, high blood sugar and general misery.

Junior brought me in in the morning and stayed with me, regaling me with tales of her 20-mile hike to a hidden hot spring over the weekend. It was hilarious and kind of like a Junior version of Wild. It kept me very entertained and distracted.

Nine hours of IV fluids to replace what I lost, intravenous morphine that only kinda sorta took the edge off, testing that revealed a urinary tract infection, and eventually coming home.

Praying I can stay in my own bed the rest of the week.

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Looking like an Emoji with the X’ed out eyes

Another Week Down

change of scene (guest room bed)
change of scene (guest room bed)

Here I (still) am. It’s getting surreal, isn’t it?

This is what happened this week.

  • I had an epidural injection, hoping that it would cut down on the inflammation and give me some pain relief. I was nervous about it. But the procedure itself was not traumatic. The bad news is that it really didn’t give me any relief, either immediately or in subsequent days. So that was disappointing. To say the least.
  • I escalated the pain medications to even higher intensities. The result was about 4-5 hours of total pain relief, and about 2-3 days of complete CRAZY. I mean, I lost my mind. It really did a number on me. Like out of control crying, and a kind of paranoid panic and fear. I felt like I was disappearing. Dissolving. Maybe dying. I was an extremely unhappy little camper.
  • I stopped taking the heavy-duty pain meds.
  • The pain is worse. But I don’t care. I have my mind back.
  • I went for a neurosurgery consult. Because of the size and location of the ruptured disc, surgery is recommended to remove it, rather than waiting the 6 months for the disc material to re-absorb into my body. Mostly because of the profound weakness I am having in my arm. Nerve damage, if left too long, can be difficult or impossible to reverse, and this is my dominant arm/hand.
  • I’m going for another appointment next Thursday and hopefully will then be put on a schedule for surgery.
  • I am ready for this.

This has been an incredible experience, really. It is teaching me so much about patience. About understanding who I am aside from what I DO. It has taught me what it really means to conserve energy. The smallest things take so much energy; even lying on the back porch talking to friends wiped me out. I’m still learning.

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gift from a friend

I’m taking it as a gift to be able to read, to meditate, to sleep a lot. (a LOT) I love it when my friends come and lie down next to me and we just look at the ceiling and talk. It’s very comforting. But I can only take about one visit a day and it has to be very… low key.

When my mind is working, I can still write.

I have had pretty much no appetite. I think because I am burning about zero calories per day.  I’ve lost weight. My muscles are thin and noodley. I think my muscle mass has pretty much left the building. I try to be my own home care physical therapist and take myself through the exercises I do with people who are in bed all day. I’m not sure if it’s helping or not.

Those goals I had — tomorrow night is the Grotto Litcrawl reading. It’s still up in the air. I’m going to wait until the last minute to decide. But there’s a BART strike. These events are notoriously crowded and intense. Energy wise, it just might be too much.

Sadly, the trip to Mexico is off. It’s disappointing. What can I say? There will be other chances out there. I’m tripping around my own private Mexico these days, wandering around inside my head.

I know beyond a doubt that this experience is changing me. It’s one of the most challenging things that has ever happened to me, but it is not the worst one by far.  I’m learning a lot. In this small space, I am growing.

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Still life: bedside table

 

 

 

 

 

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