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!

Sunday, January 18, 2009

My Insurance Company Has So Much Faith in My Ability to Heal All On My Own

By the way, I got a message from my new physical therapist that my insurance company has decided that I need only six home PT treatments. That's the two I already had, plus three this week, and one last one on my 14th day post-op.

Your Body is a Self-Correcting Wonderland

What a difference a couple of days make. For anyone reading this who might be contemplating having this surgery: Even under the best of circumstances (and I've had them all -- excellent surgeon and hospital staff, great PT, plenty of self-motivation to do as much of what I'm told as possible, a sensitive and earnest caregiver and supportive family and friends, nowhere I gotta be for the next few weeks) let there be no illusions; the first week is hard. Make that HARD

It reminds me of childbirth. Everyone tells you not to think of the contractions as "pain" yet it's hard to call them anything else when you are in the middle of them. And as with childbirth, you'd like to think that the pain you go through just after hip resurfacing surgery will all be worthwhile and will bring to you a new joy you never had before, or at least not since you developed AVN or arthritis or whatever caused the hip to go bad in the first place. Only in this case there is the added benefit of not having to change anyone else's diapers while you recover! (Don't get me started on what a great idea I think the catheter is and how much I miss it every time I have to -- joyously -- struggle out of bed and into the arms of my walker to get myself over to the bathroom to empty my bladder.

But I do know that in all likelihood, this will all be worth it and I will be able to get back to living my life, taking long walks, taking my 12 year old son places (if he'll agree to be seen with me at this point in his life), and getting back to playing music.

The daylight brings relief, but trying to sleep the first three nights I was out of the hospital (3rd-5th nights post-op) were a unique brand of hell. It really didn't help being forced out of the hospital without warning by my insurance company, whose name I want to shout from the rooftops: "Achtung MDIPA/United Healthcare".  MDIPA used to be decent, and probably not by coincidence, accepted by most doctors and medical establishments. But then they were purchased by United Healthcare. This organization is obviously committed to and bound by their euphemistic title. They are fiercely united in their bold mission to keep people from getting actual healthcare, instead offering something that sounds and looks very much like healthcare, but is limited by its unified focus on The Bottom Line. Anyway, I'll stop now, but I think I could have really used one more night with the wonderful nurses at Sinai -- Roselle and Denise.

Adrian picked me up Wednesday evening from the hospital and tried to keep me as "comfortable" as possible, and I tried to obey the rules by sleeping on my back with the gigantic V-shaped foam wedge strapped between my legs but I eventually rebelled against what felt like the set of a bad horror movie (not "Redneck Zombies, Peri), and designed my own fortress of pillows with which to prop myself up during sleep. But three nights of intolerable pain and frustration led me to a kind of "breakdown" while also turning out to be a sort of "breakthrough". Poor Adrian felt the brunt of my lashing out but we got through it, and I actually had a bit of better sleep that night.

By now it's Sunday night, 6 days post-op, and I've improved immensely. The PT exercises are a little easier, getting around is a little easier, and I've become more independent every day, though I can't prepare meals or carry even a glass of water while using my walker, so I'm still very much dependent on others. Adrian goes back to work tomorrow and his neighbor Candy has offered to help me with meals. And my friend Susan Pratt very kindly packed Adrian's freezer with nutritious, homemade frozen meals for me.

I'll be able to switch to a cane at some point and am thinking of buying a wooden one and some acrylic paints and using the downtime to paint it. I'll be using it for 5 or 6 weeks, so I might was well make it artful!

Friday, January 16, 2009

4 Days Post Op - Ouch but Hopeful

Today is Friday, 4 days since my surgery. I'm definitely improving, but am still in quite a bit of pain, especially at night. Sleeping is difficult. I'm supposed to sleep with the huge foam wedge strapped to my legs to keep me from crossing them while I sleep, but the wedge went out the window (almost literally) the first night I was out of the hospital. The thing is just too big for me (probably designed for a 180 pound man, like most medical contraptions). And being strapped to anything while trying to sleep feels a little too much like torture to me. So I've replaced it with a pillow between my legs and have been compliant with instructions to sleep on my back. The result is that I snore like a sailor and wake up frequently stiff and in pain. I've become able to bend my bad leg at the knee, so that gives a little "variety" to the experience, but really the only "relief" I get is to make the struggle to extricate myself from the bed and use my walker to get into the bathroom. And I get to take 10 mg of Percocet every 4 hours. So sleeping is rough and I do a lot of moaning and groaning during the night. I'm sure if a recording was made and released publicly, I'd be kicked out of Telesma and any other musical project, just for the embarrassment factor for everyone connected to me!

I'm still annoyed at MDIPA, my health insurance company, for caring more about their bottom line than the health of its card-carrying, premium-paying members. But one positive thing is that they are paying for (minus my $20 co-pay) excellent home physical therapy that my surgeon insisted upon. HomeCall is the company that was recommended to me, and Whitney, the therapist that came yesterday and will come again today, is wonderful, caring and knowledgeable. Some of the exercises are difficult, some easier, but I am determined to do them twice a day, as advised, so I can be back on my feet and fully recovered within the 5 or 6 weeks that this is going to take. She also pays close attention to the meds I take and any interactions they may have, plus she changes my bandages, and will remove my staples either next Thursday or the following Monday, depending on the condition of the wound. She said everything looks good though; not much swelling, some bruising, and very little drainage. More than you probably wanted to know.

The best news I've had is that my father, who was diagnosed with colon cancer right before my surgery, has been told that there are no signs of metastization. We'll know next week what treatment he is looking at, but this is such a relief to me. We are so close, and he has always been so reliably healthy -- a runner for decades, a 75 year old who goes to the gym everyday and takes his health (and vitamins and antioxidants) very seriously. The thought of losing him or of him suffering was more than I could bare in the days before my surgery. To say I am relieved is quite an understatement. Thanks to everyone for their prayers for him and for me!

Thursday, January 15, 2009

My insurance company kicked me out of the hospital

I was doing well in the hospital. I was 2-days post op (yesterday) when I got the word in the early evening that my insurance company -- hearing that I was responding positively to physical therapy and was doing well -- decided that I was ready to transition to a home environment. Apparently they felt I didn't need the wonderful nurses at Sinai Hospital or the physical and occupational therapists who were helping me learn how to walk again (with a walker and crutches) and do simple things like putting on my socks with a nifty sock-putter-on-er.

I just accepted it and started getting my things together. I called Adrian to pick me up, which meant he was going to have to take 2 days off from work (unpaid) instead of one.

He got my stuff in the car, and I was wheeled out in a wheelchair and put into his Saab. My pain level was high, since I had to leave the hospital before my scheduled pain med time. I felt every bump and every turn of the hour-long car ride to Annapolis. It was too late to get my prescription filled, so I had to take the 5 mg Oxycodone pills I had taken before my surgery. They did nothing, though I ended up taking several. Adrian went out and bought me a raised toilet seat (very helpful) and some Tylenol (as a potentiate for the Oxycodone). I had to ditch the giant foam wedge I was supposed to strap between my legs for sleep; it was just too painful. I used a pillow instead. I was so upset, I thought of getting an ambulance to take me back to the hospital. But eventually I was able to sleep, and that seemed to help quite a bit.

My fear had been that I had somehow dislocated or fractured my hip during the move out of the hospital, but I ended up feeling a lot better in the morning. My panic is gone. It just seems ridiculous that a health insurance company to which I pay monthly premiums gets to say when I'm ready to leave the hospital. I ended up only staying one full day at Sinai. My surgery was at 4 pm on Monday; I spent Tuesday in a state of agony as an inpatient there; and by Wednesday was told to beat it.

Wednesday, January 14, 2009

2nd Day Post-Op - Learning to walk again!

I have a wonderful physical therapist here at Sinai Hospital named Christina. In fact, the entire staff is attentive and competent. They had me up walking with a walker yesterday and it was very painful, but I've kept at it, and today it's a little bit easier. Pain meds help, of course. They have me on 10 mg of Percaset every 4 hours. One of my big goals in life at the moment is to get off pain medications. I want my mind back! But for now, I seem to need them. But even in one day, the pain level is better.

They changed my bandage today and I got a look at the staples with which they sealed up the incision. They are smaller than I expected. I guess I had in mind one of those big staple guns we used to use to stretch canvas for oil paintings! They removed the drainage tube from the hip, so now when I walk around with my walker, I'm free of tubes and bags.

I'm doing basic exercises, trying to get the muscles in my hip and leg stronger. It makes me wish I could have worked on them before the surgery, but the last month or so, I was in such bad shape, I couldn't even imagine doing exercises! They had me try stairs today. My house has a lot of stairs and not much in the way of consistent care, which is why I'm going to stay at Adrian's for a couple of weeks.

Tuesday, January 13, 2009

1st Day Post-Op!

It's hard to believe I'm able to post anything after the night and morning I had. It's been pretty rough, but I'm definitely feeling better -- especially after being taken off Dilaudid, which I had as an I.V. drip. It was awful. I felt so tired, I literally fell asleep while eating my breakfast.

For the surgery yesterday, I was wheeled into the operating room around 4 pm and given my spinal anesthesia, followed by sedation. I woke up in the OR and was wheeled into the PACU around 6 pm or so. I can't even remember my pain level at that point, though I do remember that when I was given the button to push (to self-administer the Dilaudid) I was very relieved. The nurses told me to push it every time it lit up, and I found that if I fell asleep and forgot to press the button, it was difficult to get back to a comfortable state.

I was woken up by pain or attendants all night long, and was so unpleasantly drowsy all morning. I asked to be taken off the Dilaudid and put on Percaset instead, and that feels much more like it. I was able to walk with a walker a short (painful) distance and back to my bed.

I realized while doing physical therapy that I was afraid of the pain because I didn't understand it. I thought it meant something was wrong, but the therapist guided me through exercises, through the pain, and encouraged me to go gently, but go!

So I feel very motivated to do the exercises and try walking. And as soon as they remove the catheter, I will HAVE to walk to the bathroom! I feel much better this afternoon, and that gives me hope.

Sunday, January 11, 2009

Last Day Before Surgery!

It's the last day I can bathe, wash my hair, reach my toes and have a hip that's not made out of metal and a smooth, scarless hip.

This pre-op period has been so difficult, wrought with sickness and discomfort. I have had so much to do, but have been able to do very little. I finally felt a lot better yesterday, but of course, used that renewed energy to go out and get some things done before I'll be unable to drive for two weeks. Stupid things like buying new eyeliner because my old one is almost out. I got gas even though my car will be sitting around for at least two weeks. I just don't want to have to deal with buying gas in the cold of winter on crutches! I tried to get my prescriptions filled, bought last minute things to take to eat at Adrian's, etc.

The end result was that I walked a lot and I haven't been able to do that in quite some time. Predictably, today I'm in a lot of pain. Took my last epsom salts bath. It's a fibromyalgia flare-up, which I haven't had in a while. Maybe I'm getting all these things out of the way before the surgery. Fibromyalgia is what my friend Bruckie would call "wavular". It comes and goes, flaring up and then subsiding. I am afraid of the effects of surgery on the fibromyalgia. It was after my last surgery that I developed the strange and painful symptoms that were eventually labled "fibromyalgia". Some people experience powerful flare-ups after surgery. My only hope is pain meds, the breathing I've learned from Joe Panella, mantra meditation and the good care I'm sure I'll have in the hospital, and especially when I get back to Adrian's.

Friday, January 9, 2009

Some History

There's a backstory to my hip resurfacing surgery that I thought I'd tell, while I'm laid up nursing the relapse to my head cold, a fibromyalgia flare-up and my poor aching hip and back. (Thank God for laptops.)

I was always a powerhouse of energy and productivity and never even gave it a passing thought. My health was excellent for years! I had three very active children, started a graphic design business in 1992, wrote and recorded 2 CDs, performed several times a month in two separate bands -- often out of town, hosted and managed a benefit concert series in Baltimore. People would often say to me, "I don't know how you do it!" I don't know how I did it either, but apparently it was taking its toll.

In September 2004, it all came to a halt. I had painted all day with two artist friends of mine, and then went on to a rehearsal with Telesma, the off-beat psychedelic, tribal, world dance music band in which I'm the lead singer. I couldn't stand up and trouble finding the energy to sing. A few days later, I took one step down to go outside in my backyard and felt the most incredible, unfamiliar sharp pain in my groin. It went away quickly enough, but I experienced it a few more times and wondered if I had dislocated my hip or something. 

I went to my primary care doctor (Jyothi Rao of Columbia, MD) who was sharp enough to suspect avascular necrosis. She ordered an xray, which was normal, and then an MRI, which confirmed her suspicions. I had never heard of avascular necrosis (AVN). Sometimes called a "heart attack of the hip", apparently there was a one-time "event" where a blood clot formed in a blood vessel in my hip, cutting off the blood supply to the femoral head. Without its nourishment, the top portion of the femur died, leaving soft spongy tissue instead of hard bone. Eventually the cartilage disintegrates, the the joint becomes arthritic. The pain comes from bone hitting on bone, and apparently bone has many nerve endings in it. If left untreated, the hip would eventually "collapse". I didn't know what that meant but it didn't sound pleasant. I was put on crutches immediately to prevent any imminent collapse. I was referred to orthopedic surgeon Dr. Michael Mont of Sinai Hospital in Baltimore, one of the top experts in the country on AVN and joint replacement. Mont confirmed the AVN and suggested we do a core decompression surgery, where he would drill a small hole into the femoral head, to try to stimulate new bone growth. Mont told me he had a very high success rate with this surgery in patients with early stages of AVN like mine.

I had the surgery in January 2005 but it didn't help my pain level much. In fact, it was after the surgery, as I was convalescing, I began to experience strange symptoms that would eventually develop into mysterious and powerful bouts of pain, fatigue and weakness.

It began with a strange "electric" feeling in my front teeth. It was painful and constant. Then I would feel an incredible tightness and intense pain in my knees, hips and elbows. At my lowest point, I could barely bring food to my mouth to feed myself. I went to lots of doctors at this point. For a while it was thought that I had Lyme disease, and I sought treatment with Dr. Ross Stark, an eccentric but effective doctor of acupuncture in Annapolis. It was through him that I learned the "Secret to Happiness" (for me) -- epsom salts baths. I haven't been to him in years, but I am still a faithful epsom salts bather. 4 cups of epsom salts in a warm bath for 20 minutes. Sometimes this was the only thing that would help. Stark claimed that it was the cheapest and most effective way to detox. He was certain I had Lyme disease and treated me for that for about a year.

I did get much better by working with him, but not completely. I stopped working with him (and tried several other acupuncturists) and ended up being sent to a Rheumatologist and was prescribed medications (Lyrica, Cymbalta, Trazadone) to deal with my new diagnosis: FIBROMYALGIA. I don't believe in this "syndrome" exactly, and have read medical articles that connect Lyme to Fibro, and blood disorders like mine to auto-immune diseases and fibromyalgia in particular. So who knows? Oh, did I forget to mention that in the course of treatment for AVN, it was discovered that I have 2 genetic mutations that result in my body having a difficult time breaking up blood clots that form in my body. So the cause of my "idiopathic" AVN was actually a blood coagulation disorder I didn't know I had.

By the spring of 2006, I developed a strange and constant pain in the middle of the left side of my back. It became so painful and nagging that I tried to figure out what it was and FIX it. Though CT scans, MRIs, Xrays, etc. showed no reason for pain, no one was sure if the pain was caused by the unresolved AVN in my hip. I sought treatment through acupuncture, naturopathy, massage, reiki and anything else I could, but nothing helped and I was expending loads of cash and energy. I turned to pain management that included trigger point injections, epidural injections, cortisone shots to no avail. I was put on opioids, which have saved me from agony, but of course I didn't want to live the rest of my life on them.

Finally my pain management doctor admitted to me that the back pain was probably connected to my avascular necrosis after all. I left there, called and made an appointment with Dr. Mont, and even scheduled a surgery date, knowing it was time to do some kind of surgery.

Thursday, January 8, 2009

4 days pre-op -- all clear for surgery!

I was so relieved today to go to Sinai Hospital and be cleared to have surgery on Monday. My cold is finally almost gone. Zicam is amazing stuff. I'm in a lot of pain and have had to cancel so many voice lessons, that I wouldn't blame my students if they were looking for another teacher. I hope they don't, and I can't wait to get back to teaching, but I can barely stand up for long at this point.

Sinai offered an excellent orientation for joint replacement patients that I attended this morning. They offer it twice a week, so they must do a tremendous amount of replacements. I felt like running out of the room and changing my mind at some points. The thought of possible hospital infections, hospital food (which we were warned is not great), blood being taken every morning at 3 am, and of course the PAIN that I'll be in after the surgery is quite daunting. But on the other hand I'm excited to be finally doing this. I just keep thinking about being able to go for long walks again. And to do more gigs with Adrian again. 

Looks like I'll be able to have spinal anesthesia. My blood coagulation disorder won't be a problem after all. If you have hemophilia or a condition that causes excessive bleeding, they can't risk a hematoma and bleeding at the spinal injection point. But my condition causes the inability to break up clots, and that doesn't matter for spinal anesthesia, apparently. It may be a risk during recovery, but they will put me on blood thinners.

Tuesday, January 6, 2009

6 days pre-op

2009 is going to be my year to get well. Too bad it had to start with a head cold. I found a great homeopathic remedy at the grocery store called Zicam. It's really helping. I have a persistent headache, but my cold symptoms are almost nil. I'm still resting, drinking ginger tea, eating chicken soup and taking vitamin C and zinc. I absolutely must have this surgery next Monday. I'm determined. I'm really looking forward to more gigging this year, especially with Adrian doing my songs. Plus we are working up a bunch of acoustic songs -- some of my originals and some covers. While I've been in so much pain and having to lie down on my heating pad practically non-stop, we've been able to keep doing music by him playing acoustic guitar and me singing. I've gotten pretty decent and singing while lying down! You can still use the belly and the mask!

I went to the pain management doctor today and was told -- what I suspected -- that by my being on pain meds for the past two years, my recovering from surgery might be particularly rough. I was assured that I would be given a morphine drip and stronger pain medication afterwards, but I am not looking forward to that. I'm trying to keep positive and hopeful that eventually (after 2 or 3 months post-op, according to Marilyn Seashole, my nurse practitioner at the office of Dr. Abdul Soudan) I will be pain-free and med-free!

Monday, January 5, 2009

7 days pre-op

Well, I've developed a cold. My hospital instructions say if you develop any kind of sickness (i.e., a cold) 1 - 2 weeks before surgery, to call them immediately to reschedule your surgery. Instead, I went out and bought homeopathic medicine, chicken soup and ginger root to ambush this cold before it gets bad. So far so good. I also took an epsom salts bath -- which has been a life-saver ever since Ross Stark, a kind of eccentric acupuncturist in Annapolis, told me about it. Soaking for at least 20 minutes in a warm bath with about 4 cups (half of one of those big cartons) of epsom salts in it helps with my hip pain and does wonders for my fibromyalgia pain.

I looked online and found that a lot of other people have had this kind of bad luck -- getting sick so close to surgery. I'm very attached to keeping my surgery date as Monday because my work and performance schedule depends on it. I had no fever when they took my temperature at the rheumatologist's today. I'm hoping to get some good sleep tonight. Please let me be well!

Sunday, January 4, 2009

8 days pre-op

I wanted to begin this blog before my hip resurfacing surgery on January 12 to share my experiences with fellow hip resurfacing patients as well as have a record of my feelings and experiences for my own benefit, and to share what I'm going through with friends and family.

With a week to go, there is a lot of preparation. I feel excited about the surgery and the prospect of being able to walk, dance and move again! I'm also a little nervous. I've been reading about other people's experiences, and have done a lot of research about hip resurfacing vs. total hip replacement, what to expect post-op, etc. 

I went to see my orthopedic surgeon, Dr. Michael Mont, recently because I had come to the end of my rope with hip and back pain, and my pain management doctor (Dr. Abdul Soudan) finally admitted, after seeing me for over two years, that he thought my back pain was caused by my arthritic hip. Mont had discouraged me from doing hip resurfacing last spring. He instead suggested we do another core decompression surgery (with scope this time), as we had done in January 2005 to no avail. I almost went for it, but because of my teaching and performance schedules, I opted to wait until this winter and see if I was still in as much pain. 

I had a car accident in May 2008, and though not seriously hurt, what I did suffer from was all on my left side, which is the side of my body that suffers most from the avascular necrosis of my left hip. My ribs were jammed into my spine and I went through extensive physical therapy (until my PIP money ran out), though it never really helped. Ever since the spring of 2006, I have experienced severe back pain on the mid-left side of my back. I had all kinds of diagnostic tests, which showed no cause for the pain. The accident exacerbated the back pain terribly. I also had a huge resurgence of my fibromyalgia, something I seemed to develop after my core decompression surgery (2005).

By the time my teaching session at the Chesapeake Arts Center ended in December, I was in tremendous pain. I had a few more performances I had lined up, and then a break until February, when both teaching and performing had to start up again. If I was going to have surgery, this would have to be the time.

I went to Dr. Mont on Dec. 19, and had already requested a January surgery date. I knew we were going to end up doing something surgically, but I really didn't think Dr. Mont would allow me to have the hip resurfacing. After looking at my xrays, there was no question that my hip had deteriorated quite a bit compared to the last xray (Spring 2008) and was quite arthritic. He gave me the facts on hip resurfacing and total hip replacement and asked me to make the choice, though he clearly favored the resurfacing. I liked the idea that my femur would be kept intact, and just the head would be removed and replaced.

There's much to do in the next week -- get the kitten spayed, give voice lessons for students who want to have at least one more lesson before I'm "laid up", graphics work that needs to get finished up, blood tests to be done, hair washed (and colored? -- no showers for up to 2 weeks post-op!). And I want to spend as much time as possible with my kids, especially my youngest: 12 year old Dylan.