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Back In the World (Sort of.) November 23, 2013

#throwbackthursday: sometimes I have to hold onto stuff.

#throwbackthursday: sometimes I have to hold onto stuff.

Little by little. I’m venturing out. I’m doing small things, both in and out of the house.

Everything feels huge. HUGE. The first time I drove the car last week, I felt like a sixteen year old with a new permit, gripping the wheel with white knuckles, waiting long minutes before pulling into traffic. Testing out my neck, my reflexes, my attention, my ability to focus on more than one thing at a time. (the radio, other cars, my husband’s voice) I drove about 5 miles to drop my mother off at her volunteering gig.

I am humbled and amused that my 90 year old mother has about 100x more stamina and energy than I do. She can spend a day stuffing envelopes, come home and walk the dog, then go out to a Golden State Warriors basketball game, cheering and stomping until 10:00pm. All of which would probably kill me at this point.

People are happy to see me out in the world. They tell me I’m looking great! The teeny tiny bandaid at the the back of my neck doesn’t really represent anything. I say, the incision is small but deep. But it’s not just the incision that cut through the tough white fascia in my spine, the muscles and the drilling into my vertebrae. It’s the six weeks of unfathomable pain, of lying in bed trying to find a position, or walking around in ballet position, of counting the minutes before I surrendered and had to just get horizontal again (15 minutes on a really good day, 2 minutes on an average day).

Meanwhile I was forever experimenting with the pharmacy that was multiplying in my bathroom, trying to test the drugs to see which would bring relief without vomiting or psychosis or some other unpleasant side effect. Meanwhile my muscles, so long the pride of my body, have thinned down into thread. I have to be careful with what I lift. Even some plates are still too heavy. I’m better with saucers, single utensils, the little mugs and glasses, not the big ones. Pots and pans are out of the question. I won’t be hauling the turkey next week.

This week I stopped in at the Weight Watchers center to check in with Julie, the fabulous leader who has been filling for me since September. I told her I didn’t think I’d be back this week. Just sitting in a chair listening to her speak tired me out. I couldn’t imagine summoning the energy to stand up in  front of the meeting room. Not yet.

Last night I went back to the Writers Grotto because my beloved office mate was having a pre-nuptial party and I wanted to celebrate with her and the writers I’ve missed for so many months. I wanted to see my little space that I’d missed.

My succulent plants were long dead.

is this a metaphor for something?

is this a metaphor for something?

After a couple of hours of merriment (during which time I mostly slouched in the corner of a sofa, kind of dazed) I felt like I was melting. Unable to speak or hold up my head. I got home around 7:30 and went directly to bed.

Parties are fun, but they take a lot of energy!

Parties are fun, but they take a lot of energy!

This is how it is now. Better, so much better, but so far from where I was. I’ve taken a few walks this week, no more than a mile at a time. I slow-walk, always with a friend, whose arm I can grab if I start to wobble, half a mile to the “It’s Nice To Be Nice” bench. Then I rest. Then walk a half mile back to the car and again, directly to bed. It wipes me.

Alexandra accompanies me on the one-mile marathon

Alexandra accompanies me on the one-mile marathon

Still, I’m managing to get some things done. I’m checking things off my to-do list. Phone calls and getting stuff done that I never had time to do before. Small things.

I’m reading. And writing. Thinking about new directions for the new year.

I’ve started reading Roxana Robinson’s stunning novel, Sparta, and reading about the Marine returning home from Iraq, and how returning from his experience is so surreal and terrifying, how his loved ones want to welcome him back just as he was before.  I know that two months of a herniated disc is not really comparable to four years of war, but it’s been like a little war in my body. It was a shocking kind of attack like I’d never experienced before. Where everything I believed and knew about myself was called into question.

I’m putting my life back together but it’s so much slower and in smaller increments than I ever could have imagined.

 

 

 

Post. Op. November 17, 2013

Pre-Op with my buddy.

Pre-Op with my buddy.

So, it finally happened: I had a cervical laminotomy, microdiskectomy and foraminectomy on Wednesday afternoon. I had been hoping hoping to avoid surgery, but after eight weeks of really relentless pain, I was glad to try something that promised the hope of relief. I won’t lie, I was nervous. And emotional. But ready.

We got to the hospital a few hours ahead of the 3:30pm surgery time. I put on my stylin’ hospital gown (very nice design, with a big pocket in the front!) and settled in to wait. I was visited by the neurosurgeon, the anesthesiologist and the OR nurse. Finally they wheeled me into the operating room. The last thing I remember was going through the swinging doors that said OPERATING ROOM on them, and then… nothing.

I woke up and there was a nurse who kept saying, Take another deep breath. Another one. Apparently I had to hang out in recovery for a couple of hours because the breathing thing wasn’t happening to their satisfaction. I had about a minute of “I think I’m going to be sick” but they shot me up with anti-nausea stuff right away and nipped that in the bud, so for the first time I didn’t have terrible vomiting after anesthesia. I was very grateful for this.

Finally they brought me up to my room where Mr. McBody had been waiting for me. I was so happy to see him. And by the time I was awake enough to notice, I realized that the arm/shoulder blade pain that has been torturing me for two months was gone. GONE. AWAY.

I did a lot of sleeping. I managed to get up, with a lot of help from the nurse and Mr. McB, to the bathroom.  The next day (Thursday), the physical therapist came by and stated we were going for a walk around the hall. This sounded very ambitious to me, but lo and behold, holding on to the IV wheel, I did it.

the physical therapist took me on my first walk

the physical therapist took me on my first walk

There was a big board in my room with all of my pertinent information. One thing they do is ask every several hours, What is your goal? (I thought this was kind of amusing). I said my goal was to go home.

Goal: would like to go home.

Goal: would like to go home.

I got home around noon on Thursday. I think I slept most of that day. Friday and Saturday I felt pretty sore in the incision area, which they said was to be expected. Even though my incision was pretty small, it was deep and a lot of stuff had gone on in there. As Mr. McBody is fond of saying, “they really raunched around in there.” He was able to get ahold of my surgery report which I found very interesting.

I had noted that there were these two spots above my ears (on my skull) that were very, very sore and tender. Then I realized that this was because my head was clamped to the table!

The head was secured with the Mayfield head fixation device

Which I suppose was a good and necessary thing. I was taken by how many times the words “careful” and “carefully” were used in the report. Like a dozen. Somehow this made me feel good. I mean, he wouldn’t say “casually” or “messily” but I liked that he made a point of being “careful.”

It became clear that there was a large disk herniation causing marked compression of the ventral nerve root at its exit from the spinal canal… the larger pieces of the herniated disk were mobilized…this resulted in immediate decompression.

Reading this, and talking with the surgeon the next day, made me feel so relieved and also like… so there was a REALLY BIG REASON I have had so much pain. He said that the nerve had basically been strangled and stretched and he was surprised I had been able to go 8 weeks in this condition. I was also so relieved that it was so straightforward – there was a very specific, physical cause for my pain and he fixed it.

So since I’ve been home, I’ve had different pain. The place where the incision happened has been pretty sore, but it mostly bothers me when I’m changing position. (lying down to sitting up is the worst) Once I’m in the new position, it kind of calms down and then I’m good unless I move too much. It’s a completely different sort of pain, and I am noticing that it is improving every day.

Yesterday, Lily came by and took me for a walk up on the trail. We went a whole mile and although it was exhausting, it didn’t make my pain worse. So YAY!

1 mile walk!

1 mile walk!

I feel like I am finally on the road to getting better. I’m still not able to drive (too much head turning) and I don’t have a lot of energy, but that terrible, awful stabbing pain has left the building.

I didn’t get to Minneapolis this week. Which was sad and disappointing. But tonight I am actually going to show up for something on my calendar. I’ll be reading from this new book tonight and I’m going to be out in the world, even for just a few hours.

Yay. Whew. Yay.

 

Ambulatory! November 4, 2013

Filed under: exercise,health,walking — Susan @ 8:26 pm

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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!

 

Dehydration is the Devil! October 22, 2013

Filed under: diabetes,health,hospital,injury,lessons learned,pain,struggle — Susan @ 6:30 pm

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.

 

Another Week Down October 18, 2013

Filed under: emotions,health,injury,lessons learned,struggle,surgery,writing — Susan @ 10:47 pm
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.

IMG_1372

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.

IMG_1378

Still life: bedside table

 

 

 

 

 

 

Answers, Waiting, and the New Normal October 14, 2013

So I finally got some answers to this vexing pain last week. I went to see a spine specialist (orthopedist) who looked at my MRI and pointed out quite clearly that I have a ruptured cervical disc. The disc material is pressing quite intensely on my 7th cervical nerve, causing this crazy pain AND some weakness in my arm. It was upsetting to see this but also unmistakeable, and also a relief to see in black and white how much absolute sense it makes (all that PT training came flooding back). He has recommended an epidural injection tomorrow to try and bring down the inflammation and swelling. He said it will most likely result in dramatic pain relief (OH BOY! I can’t wait!) and then it will remain to be seen if there is continued weakness from any nerve damage. Then I will have to have a surgical consult, and I don’t like the sound of that, but I am just taking one day at a time, which is about all I can do.

This picture scares me. But if it's gonna take away the pain....

This picture scares me. But if it’s gonna take away the pain….

It was a pretty rough weekend. Mr. McBody was away at a conference all weekend, and I had a lot of time and space to wallow around in a hazy painful cloud. It got a little surreal at times.  I learned by Sunday that it is a good thing to try and keep a schedule. To try and be as functional as possible. I had some company come visit on Sunday and it made a HUGE difference to shower, get dressed and see friends for just a little while. I have learned that I have about a two-minute window from lying down to sitting or standing up, and after that time passes, it just hurts like the devil. However, assuming the “ballerina” position does take some pressure off. When I was at the doctor, he said that this is a classic diagnostic tool and he sees it all the time.

I was really upset when I went to the doctor on Friday, and they told me I had missed my 9:30 appointment. What! It turns out, in my narcotic haze, I had heard “October 11th” and I just kept focusing on the “11″ part of it, and showed up at 11:00. But the doctor saw me in the waiting room, looking desperate with my arm over my head, and he squeezed me in. I think he pretty much diagnosed me from across the room, even before seeing the MRI.

IMG_1345

It’s amazing how life can just shift from one version of reality to another. In the span of a few weeks, I have gone from being one of the world’s busiest people, to someone who needs to gather every bit of endurance and energy just to take a shower or get through a five-minute meal at the table.

It’s been a real opportunity for reflection. To really consider my priorities, my identity and what is important. It means a lot to me to be able to continue to write and read. I’ve been snarfing down books. I spent all day Friday reading Alice Munro. So excited about her Nobel Prize. I’ve also been able to spend some real time working on my own writing and editing, when I’m not knocked out by painkillers. I have been able to enjoy some pretty alert hours every day.

My literary hero.

 

I started reading Dave Eggers’ The Circle, yesterday, and I’m almost done. It’s pretty mesmerizing, especially under the circumstances. Right now I feel like I would go mad without social media to keep me connected to the world. But there’s a balance. There’s nothing like human contact, face to face. There’s also nothing like snail mail. I got this awesome get-well gift from one of my writer friends which made me laugh out loud.

IMG_1338

Font joke! hahahaha

It is amazing to me how quickly a body can degenerate. Today I stepped on the scale just for curiosity and I am down more than five pounds. I am sure this is 100% muscle wasting. It takes all my strength to pick up a wet towel. I get shaky standing up even for a few minutes. I feel like I am just dissolving. But I also know that  once this pain is managed, it also does not take too long to regain what has been lost. I’m not totally distraught over it, it’s just kind of remarkable.

I’m eating well, under the circumstances, even though I’ve had about zero appetite (I’m burning about zero calories, too). Before this all began, I had hired a Task Rabbit as kind of a “sneaky caregiver” for my mom. She often is lonely and bored in the afternoons, while we’re all (normally) rushing around working. I thought it might be a good idea to have someone help out with cooking a couple of times a week, with her involvement, so she has some company, AND so that we have some decent food to eat rather than some takeout on the fly. As it turns out, this person has been an absolute godsend. Whereas she was first helping out because I was too busy, now she’s helping because I”m just incapable. THAT part has been like a dream come true. I scroll through Foodgawker and send her links to things that look good, and voila- a few hours later there it is on the kitchen table. AND, my mom really likes her. It’s a win-win.

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Thai Chicken Zucchini Meatballs – MMMMM.

The last few days have just felt like interminable WAITING. Waiting for an answer – and now waiting for a treatment. I really, really hope that this injection will do the trick so that I can get back to my life. But it will be “going back” in a different way. I’ve had a lot of time to reflect on my priorities. I don’t want to just be rushing around madly from one thing to another, just because I can. I want to slowly re-integrate the things that really matter.

I’m also zoning out a fair amount. I watched the entire first episode of Scandal, which I’m finding addictive, ludicrous and entertaining. Probably just the medicine. And I’m getting to be all long distance doting-grandma to Juniorette’s new baby. Everyone, meet Junie. Isn’t she adorable?

Junie the Hedgehog

Junie the Hedgehog

So, tomorrow morning I’ll be going to the Surgery Center and facing the needle. I’m ready. SO ready to turn some kind of corner.

 

The Week In Which I Cried A River, then Found Hope July 26, 2013

hip

These are my actual hips.

So it’s been a rough couple of months out here. I’ve basically been having nonstop right hip pain ever since the Oakland half marathon, and it’s been bumming me out big time. The hardest part has been not knowing for sure what was wrong – was it a muscle pull? Bursitis? For a month or so I thought it might be due to some pretty big fibroids I have. But although they are clinically classified as “huge,” they have not grown or changed in size since 2009. So my gynecologist was not ready to do anything drastic until I got a complete workup from an orthopedist.

I finally went and had that evaluation on Wednesday. First he did a physical exam. He said he was pretty sure that I did have hip arthritis, and also based on my symptoms, pretty sure I am going to need a total hip replacement.

Thud.

(that was my heart falling out of my body onto the floor)

I had been sort of bracing myself for this possibility. I tried to recover myself quickly and then I asked, “But what about running?” I think I had this picture in my head, like, as soon as I can just get FIXED, then I can carry on with all my usual stuff, that has, been by the way, on hold for a long time. He said, you know, people are going to do what they’re going to do, but we really do not recommend it. Especially for a young person, we want that new joint to last a long time, and the more you use it, the faster it will wear out.

And then I started crying. And pretty much didn’t stop for about eight hours, until I passed out from sobbing. I had to go to my Weight Watchers meeting. I drove past the site of See Jane Run and totally LOST MY SHIT.

I thought, that was my last race. Of my entire life. I thought, I was going to do that half marathon. And now I never will. I was choke-sobbing all the way to the parking lot of my WW center. I tried to pull myself together. A few of my observant members noticed that I looked like hell. They asked me if I was having a bad day. I really could not even talk about it for fear I would start hysterically wailing right there. I went and hid in a storage closet until the meeting was supposed to start, and miraculously I got through it more or less. It was frankly a relief to talk about SALADS for half an hour.

I got back in my car. The waterworks resumed. I had this image of coming into the house and seeing my beloved medal rack with all my race bling hanging there. I was wailing as if the world was over. Part of my world WAS over. I went home and crawled into bed. I felt like I was seventeen years old and the love of my life was breaking up with me. The love that I had never thought I’d have. Who ignored me my whole life and then finally turned their attention to me and said I was worthy.

Mr. McBody came in and held me as I carried on. I told him that he was not allowed to utter the words “swim” or “bike” until I deemed it acceptable. It was like when we lost our first child. People kept saying I would go on to have other wonderful children. Which turned out to be TRUE, but at that moment it was the last thing on earth I was able to hear. So, I might go on to have a wonderful biking or swimming life, but at that moment I needed to mourn the running.

Sometime during all this melee, I received a text from my dear friend Carla. She texted, Have you seen hiprunner.com? They have an e-Book….

my new community

my new community

I took a look at the site on Thursday, when my head was throbbing and my eyelids looked like giant waterbeds. I made some sort of wild noise of disbelief and joy as I read about other runners who had undergone hip replacements and who were… RUNNING! WHAT!?!?!?!?!? I immediately posted a comment of OMG OMG OMG are you kidding me?! I received a very warm welcome and an invitation to join the Hip Runners Club. Did I want to participate? HELL YES.

So. I have dried my tears. I am dusting myself off and looking toward the next whatever-it-is. I don’t know when this will actually happen because I need to find myself a new orthopedist (the one I saw this week is retiring) and I am going to find one who believes that some form of running post-op will be okay.

And I’m gonna order myself this T-shirt. Game on.

Bring it on.

Bring it on.

 

 
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