Monday, February 9, 2009

4 Weeks Post-Op

I haven't posted anything in a while for a number of reasons. I have been battling some strong flare-ups of fibromyalgia, which I knew I might experience after surgery. It didn't hit right away. As with my car accident in May, it took a while for the fibromyalgia to kick in, but kick in it did.

Fibromyalgia is a strange syndrome, and I'm still not completely convinced that's what I have. But the flare-ups come on in a subtle wave of symptoms, beginning with a weird tingling in my upper front teeth. That's followed by a tightening in my joints that over the two days that a flare up usually lasts, builds to an almost unbearable aching in my elbows, knees and hips, with some stiffness in my hands. I've been told that fibromyalgia doesn't affect the joints at all; it's the pulling of the muscles that causes the joints to ache. When this all began, after another hip surgery in early 2005, I used to have terrible sleep problems, waking up every hour and feeling an uncontrollable urge to stretch, especially in my legs. But I was eventually sent to a rheumatologist who confirmed my diagnosis and started in with medication. Two anti-depressants -- Trazadone for sleep and Cymbalta for pain. And the FDA favorite, Lyrica, also for pain. These actually seem to get the Fibro symptoms under control, until something traumatic or stressful comes along (car accidents, surgery...) and then it seems to take a while to stabilize. After my car accident, my dosages of Lyrica and Cymbalta were increased, which eventually helped quell the symptoms.

I don't think there's much higher to go on the dosages of these, so I'm hoping that by resting a lot and not pushing myself the way I used to will help get this under control. Today is the first good day I've had since the attacks began. Sleep seems to be the best antidote, so I've been liberal with that.

I begin performing again this Friday with Telesma in Annapolis and then at a benefit for the Senator Theater in Baltimore on Sunday. These will be late nights of being on my feet and singing for hours, so it will surely test my stamina.

As far as recovery from the hip surgery on January 12, I'm doing pretty well. I'm still walking with the aid of one crutch until I'm given the go ahead to walk crutchless on February 19 by Dr. Mont. It hurts to walk, but I'm told I should do it anyway. Today was my biggest outing yet -- walking all around the townhouse community where I live. It's been beautiful outside, which really helps.

I've been doing well on the stairs, though everything is still slow-going. I've been doing more bending over than I should, but the physical therapist told me if I have to bend over, to extend my leg out behind me, so as not to break the "90 degree rule". It's just impossible to load or unload a dishwasher, put something in the oven, change the cat's water and food, put something in the dryer -- all the normal stuff of life that involves bending over. So far I have not dislocated my hip, so I consider what I'm doing to be acceptable.

I've started teaching voice again, and except for the fact that I can't do the stretches I usually do with my students, things have been going well. I get tired easily, so I'm not completely back yet, but every day I get closer to being myself again.

Friday, January 30, 2009

My son David took some photos of me and the four cats in my bed today. They don't always get along, so this was a noteworthy occasion. This is a photo of the four of them -- left to right -- Party, Lily, Jerry and Lukey. Can you tell I'm getting to be one of those crazy cat ladies??

Home (ouch) Home

On Wednesday night Adrian brought me home, carefully helping me maneuver over the ice, where I was greeted by my two sons and four cats. After being gone for two and a half weeks, everyone was glad to see me, especially the cats. It was so nice to see my kids, but so sad leaving Adrian's care and companionship. He had meticulously done my laundry and packed my bags. We had long faces at the prospect of my not staying there any longer, and he was worried about how I would do at home, but he had gotten me through the most difficult part of my recovery, and now I was going to try to go it alone. It hasn't been a huge success. Dylan said to me last night, "Mom, you seem worse tonight than when you first came home." Something about the stairs, the stairs, the stairs. And standing on my feet to prepare meals (mine or his) causes quite a bit of pain. And did I mention the stairs? My kids are of some help but have their own lives, jobs, school, etc. My dear friend Bruckie came over yesterday and brought me a sandwich. My daughter came over last night to eat dinner and watch a movie. But somehow, I'm doing poorly. My pain level has increased quite a bit, and today I feel a flare up of fibromyalgia coming on, and I haven't had one in quite a while. I'm thinking I may have to go back to Adrian's, at least for a few days. I'll see how today goes and talk it over with Dylan and his dad.

Monday, January 26, 2009

Two Weeks Post-Op

The phrase "you can get used to anything" has been on my mind a lot during my recovery. Yes, you can get used to having a bird-bath instead of showering or sleeping on your back with pillows wedged here and there so you don't accidentally move and dislocate your brand new shiny metal hip. It's also been fascinating to me at how quickly attachment develops, how quickly we seek out patterns and security and habit. I remember when I had to abruptly leave the hospital after only two days, how I felt a kind of sentimental mistiness about leaving my night nurse, Roselle, even though she was somewhat like a drill sergeant. She woke me up at 5 a.m. both mornings I was under her care, had me bathe (bird-like) and think about ordering breakfast by 6:30, etc. Even though I was doped up on Dilaudid most of that time, I immediately fell in line and came to feel a safety and dependency under her consistent care.

I felt the same kind of silly melancholy yesterday when I put aside my walker. Imagine an otherwise perfectly healthy middle aged-woman (if you don't count the fibromyalgia and blood clotting disorder) getting attached to using a walker! But that beautiful walker really helped me get around for a good two weeks. I graduated to two crutches yesterday, and to only one today. I'm seeing some progress!

My six sessions of home physical therapy are over, so there's that to get over too. And soon I'll be returning to my own house in Columbia (the one with the many, many stairs) and leaving the wonderful care and support I've gotten from Adrian. I miss my kids and my cats. It's been particularly difficult to be away from my 12 year old son Dylan, though we talk on the phone at least once a day and his dad is taking good care of him. But it will be very difficult for Adrian and I to be apart after this. We've both kind of gotten used to this much togetherness.

I have a friend Govinda, who has MS, has been through cancer twice, and raised two sons alone. She's an amazing woman, though of course she doesn't know it, and she struggles. But years ago, before the MS, before the cancers, while we were both raising our young children, we were sitting in her bedroom talking. It was really cold outside that day, and I noticed she had the window open a little bit, and she happened to be sitting fairly close to it. I asked her why on earth she had the window open. She looked over at it, shrugged and said, "I don't know. I guess I don't ever want to get too comfortable."

It made an impression on me, and I'm reminded of that now, when I see my life shifting in big and little ways. And when I look at the television and hear about the tens of thousands of jobs being lost, and the strife we face as a people the world over. Yes, yes, the only constant thing is change. But it's not easy, and it seems that it takes a concerted effort not simply to "go with the flow" but to remain awake, to be willing and prepared to change, and to help one another cope with change in all its myriad, inevitable forms. I'm sure there's much more to it than this, but this is all I have left at the moment. My body is busy putting itself back together, changing once again, and it makes me tired.

Friday, January 23, 2009

Staples are out. Singing is in.

Well, the staples are out. I was nervous about having the home physical therapist remove them this morning, and armed myself with pain meds and ice at her suggestion before she got here. But it was really nothing. The big news is that I'll be able to take a shower tomorrow! My father is beginning chemotherapy for his colon cancer beginning on Monday, and today he had a stent inserted into his chest in preparation. He has to go through both chemo and radiation simultaneously for 5 weeks, but the thing that concerns him the most is not being able to shower for the entire 5 weeks. I can understand. In our modern culture we've gotten used to, and taken for granted, being able to jump in the shower everyday. Our forebears had no problem with sponge baths with a pitcher and basin, and I've lived in ashrams and have experienced very austere and simple living conditions that did not include long, hot, luxurious showers. But I confess, I'm completely spoiled and am looking forward to an actual shower and being able to wash my hair inside the bathtub instead of standing outside it and creating a flood zone in the bathroom.

A few years ago I was turned onto the miracle of epsom salts baths, which I wrote about in an earlier post. I'm jumping into one of those as soon as possible too. The other thing I recently discovered was using milk of magnesia as a deodorant. It's amazingly effective and safe to use. I put some in a little spray bottle. This helped a lot during this bath-less time.

I'm listening to a recording of Telesma's December 20 concert with Alex Grey in Baltimore. We are making a live album from the concert, as well as a DVD. The band members are all listening to the tracks on our own to decide which songs to include. I put off listening for days after Jonesy brought me the CDs of the rough mixes because I was afraid of what I might sound like. I was in so much pain at that point I had to lie down all day in preparation, go to the sound check, and then go back to our rehearsal space to lie down until we went on. I had just gone to my surgeon the day before and found out that my hip was near collapse and I was really in no shape to stand up and sing for 2 hours! But I'm surprised that the mixes sound great. It's always amazed me over the past 4 years of dealing with performing while being in pain that I can be in so much pain that it's difficult to climb the stairs to get onstage, yet once we get going, I feel no pain whatsoever.

I remember Adrian driving me home that night and I was feeling so much better after the concert than I had before. Singing is a wonderfully healing thing. I never knew where I was going to get the energy to sing for hours when I could find very little strength to do even ordinary things during the last several months, mainly after my car accident in May, when my health went into a steady decline. But I would always avail myself to whatever power comes when I perform, and try to allow it to flow through me. It's not that difficult to do when performing with Telesma because there are so many musicians doing so many amazing things and I let myself plug into that. It's sometimes more difficult when I'm doing a solo/duo show and my mind can think of many distracting reasons why I should get in the way of that flow!

Wait a minute -- I take it all back. I'm listening to a improv piece now that sounds like I'm a wolf howling in pain in a questionable key. That track is definitely not going on the album. I've been singing while I walk back and forth on my walker several times a day. It makes it more fun, the dog tolerates it and maybe I'll get myself back in musical shape as well!

Wednesday, January 21, 2009

Overestimation of My Own Chutzpah

Day 9 post-op. I'm recuperating after Day 8 post-op, which was a recovery from Day 7. As independent and strong as I felt on Monday, when Adrian went back to work and I was alone all day for the first time, yesterday was its opposite. I realize now how much time and energy every little action takes, and how limited my movements still are at this point. What felt charmingly zen-like to me on Monday as I made my way to and from the bathroom with great care and much time, yesterday felt like a prison sentence. Apparently in these post-World War II solid brick homes built in this quaint neighborhood in the Eastport section of Annapolis, there was no need to make bathroom doors big enough to fit a walker through. So I had to develop a strategy for navigating through the bathroom door from the first night I was here, no matter what my pain level or the fact that we had to leave the hospital before I was allowed more pain medication and late enough that the drug stores were closed.

Anyway, I spent yesterday recuperating from being so independent on Monday. I also realized I didn't think I could handle another day alone. (I did get a mercy visit from Candy, Adrian's nextdoor neighbor who made me lunch. Thank you.) So I asked Adrian to stay home with me today and tomorrow. I felt guilty about it, but honestly, I've done so much better today just having him here. We've spent countless hours watching episodes of The West Wing, he's doing my laundry, helped with my physical therapy, made sure I ate and was comfortable. Right now he's out getting my prescription for pain medication. The guy's an angel. So again, some advice to anyone contemplating this surgery (or probably any other major surgery), make sure you have someone lined up to help you as close to 24/7 as possible at least for the first two weeks. I think it really helps in the healing process to be able to relax, rest and be taken care of. I need to get back home, especially for Dylan, my 12 year old son. But I live in a townhouse with many stairs and no one to take care of me (at least as well as Adrian does). I want to make sure I'm completely ready before I take that on.

The healing process is actually pretty quick, probably because of a good balance of rest and physical therapy. I'll get my staples out on Friday by the home-visit physical therapist. (I HIGHLY recommend HomeCall in Maryland for this.) And every day I notice more mobility returning. I don't have to cringe and use my handy "leg-lifter" to get in and out of bed anymore. There is still quite a bit of pain (thus the pain meds) but I can feel it easing up. At 2 weeks post-op, which is Monday/Tuesday 1/26-27 (since I had my surgery late on Monday), I should be able to throw my walker to the side and use one crutch or cane for the next 3 or 4 weeks.

I asked my PT about driving today. Dr. Mont had said I'd be driving in 10 days, maybe 2 weeks because I have a manual transmission. She emphasized that I take short drives around a parking lot or a quiet street before venturing out on a highway. You want to know that you can safely and quickly react in any situation. There is the issue of the pain meds, but also the fact that it's difficult to lift my left foot off the ground, at this point anyway. I trust that if I continue with good care, PT and rest, I'll be able to drive sooner rather than later.

Rufus, my estranged husband, has been wonderful with Dylan, who seems to be doing well. And I have good friends who have sons the same age as Dylan, who are being so generous in helping to care for him. And these are busy women! But they've supported us through this as if we were all family, and I'm very grateful.

Tuesday, January 20, 2009

New Hip, New President, New Challenges

There will someday be that question, "Where were you when Barack Obama took the oath of office?" (for his first term!) And I'll (hopefully) look back fondly on the "luxurious" situation in which I found myself: Lying on my back with my ice pack and pillows strategically placed, and using the occasion to skip my dreaded physical therapy exercises as I watched history unfold. And maybe I'll remember that this was one of the days that I lost my enthusiasum and patience and was in more pain than I would like. I had another rough night last night. I realize that though I seem a little better each day, there are setbacks -- physical, mental and emotional.

I also don't understand completely why as a patient recovering from major surgery, you are told to take powerful pain medication before doing PT exercises, are told where you should be at week 1, week 2, etc. instead of being able to listen to your body's instincts. One of the reasons I got myself into the situation of living in constant pain for at least 2 years was because I took pain medication and just kept doing what I had to do, instead of honoring my body's needs for rest. So today I gave myself the day off from too much exercise. The PT will be back tomorrow and I hear she is going to have me walking up and down McKinley Street in Annapolis and going up and down steps, so I want to get ready for that.

In what feels like a synergistic or coincidental timing of events, my father is going to start a 5-week treatment for colon cancer on Monday with chemotherapy and radiation. I'm sad that I won't be able to travel to NY to be with him, but we talk on the phone everyday and will be going through our treatment/recoveries together 300 miles apart. I am going to go up as soon as I'm cleared for travel.

So it's a new year. I have a new "bionic" hip. We have a President we can be proud of. We have inspiration to work together, to heal together, to make change come about. Maybe we'll see a national health coverage plan in 2009. Maybe this is the year I will dance again!