Friday, September 28, 2007

An Ode to great Physical Therapists

I often wonder where I would be without my physical therapists. In many ways they are closer to the details of my case than my doctors. They are on the front lines everyday dealing with us patients, they are physically intimate (simply because they touch and feel your muscle spasms) and emotionally intimate, because they work with the patient daily, and see the daily fluctuations.

I have met many physical therapists, but, to this day, I really rely on the incredible team here in Vail. at the Howard Head clinic. Without them, I would be in far worse shape than I am. The group is prinicpally focuse on sports rehabilitation. So, they are not merely, getting you to the point of doing activities of daily living. The goals tend to be a bit more elevated -- functional rehabilitation.

When I am here in Vail, I do PT anywhere from twice daily, to daily, and currently 3 times a week (due to insurance limitations). My sessions last anywhere from 1 hour to 5 hours. And, that is where, I say, the dedication to the patient comes in. Michael Wahoff, my primary PT is one of the best guys I know as a person and a PT. His dedication is inspiring, his troubleshooting skills are quite impressive, and, his interpersonal relationship with his patients are quite calming.

I count my blessings in this regard everyday.

Wednesday, September 26, 2007

Weekend Road Trips

On Saturday, my Uncle Misha, the Suduko warrior, and I took a lovely drive through Gore Pass, Hwy 134, North of Vail, Colorado to Kremling and through Silverthorn back to Vail. We saw some incredible fall colors. The intensity of the colors was overwhelming at times. The colors have changed so quickly. Essentially in three weeks the colors have gone from green to yellow. The weather has shifted from 70 degree days to 50 to high sixties, with 30 degree nights. One of the benefits of being here in Vail and spending the time detached from my normal life is that I am more inclined to explore new places, take day trips on weekends, and that is something very special. I really have had a chance to see some incredible new places, get a larger sense of American west history, and be in breathtaking beauty. like Independence Pass, between Aspen and Leadville.

Monday, September 24, 2007

Forward Ho!

"Do not go where the path may lead, go instead where there is no path
and leave a trail."
- Ralph Waldo Emerson (1803 - 1882)

Wednesday, September 19, 2007


And that is about all that can be said. Too many concurrent synaptic firings -- pain, frustration, exhaustion,

Tuesday, September 18, 2007

Rough Times

The times when I want to write are always the times that are the worst. It is cathartic to work through in words what one experiences especially painl. Also, it is a way to categorized overwhelming emotional and or physical experiences.

So, I guess I am not feeling so hot. My joints are struggling. We have started a heavy duty PT routine, with significant load bearing. Last week things were going well, this week, I got a bit sick and things have acted up everywhere. The game is to figure out which joint is hurting the most sometimes. Generally, things are managable, but, when multiple joints hurt I really get so overwhelmed, I nearly shut down. I hate it. And, I am frustrated.

I am finally ( famous last words) confronting the essence of what it means to have a long term condition. Up to now, I have essentially been managing tactically, as each joint presents itself. (That is the word I use when my joints flare up. It is way to reduce the discomfort on many levels. It sanitizes the experience. Allows to be processed in bite size chunks, cuz, sometimes that is what I need bite size. Maybe that is why I like bon bons so much.

Anyway, I have started to put things in motion with my doctor's to try to establish a long term strategy for addessing my joints. Or, at least find out if they can do that. I am 3 months into being here in Vail and feel like we don't have any very good solutions. I am still in pain. I am trying really hard. But, there are still so many ups and downs. We have only been addressing things tactically. After two years of intesively doing this, following 10years of dealing with this particular diagnosis I need to do something different. Going on disability was the first step, Coming to Vail was the second step. Now, we are going to define the next steps.......and see where they lead.

Sunday, September 16, 2007


Finally, I got my uncle to take me camping. We went to an area of Colorado called RedStone, stayed in a lovely campground called Bogan Flats. We were just south of a town called Marble, where some of the most beautiful white marble is quarried. The marble for the Lincoln Memorial was quarried there. It was a sureal experience to see huge blocks of pure white marble tumbled down a huge cliff.

Friday, September 14, 2007

Paperwork Saga

After 3 weeks of chasing down paperwork to support my disability case. My case is finally approved through to Nov 9th. It took 4 emails to the doctors, about as many phone calls to clarify what was needed, my records from PT, several phone calls to the disability insurance adjusters, and calls to payroll.

That is a mere peek into the effort reqired to stay on top of the paperwork associated with my medical shit.

Wednesday, September 12, 2007

Time flies

It is nearly 8 weeks since my surgery. I am working on getting onto my feet and walk without crutches. Somedays are good, others are not. I have moments of hope that maybe I can get out of more surgeries. Then there are others where I am not sure what is going to happen. It is quite tiring.

For instance, today is a rough day after two days of strength training. So, I am down on the couch. I have little umph.....

These are days when I wonder how am I going to manage.

Saturday, September 1, 2007

The Paperwork trail

I have had to dig into my paperwork surrounding my treatments with focused due diligence. I am amazed how extensive that process is. Almost overwhelming to keep it all together, following up on the disconnects between the doctors and insurance agent for my disability, pursue doctor's bills, my insurance company to find out why some things were denied. It took me 3 months to coordinate between the doctor's and an insurance nurse to finally end up with a denial for a particular treatment, because it was experimental in the insurance companies eyes. This all is the seedy underbelly of having a chronic medical condition. Simply yuky....and at times angering and nerve raking.

Monday, August 27, 2007

4 weeks Post OP

It is 4 weeks since my bilateral surgery and the going is very very slow and I have mentally hit a wall. I am so tired of this. I have been dealing with loads of paperwork, frustration, bureaucracy, and do not see a light at the end of the tunnel.

I am a patient practing patience, and that patience is walking a thin line.

I am still on crutches. Still in pain, and not sure where the end is. I certainly am looking forward to it.

Monday, August 20, 2007

The Night Table

When I am tired and lying in bed, and sometimes all that is in reach is my medicine table, I just have to tidy it up.

It is my way of controlling the world. Funny as it sounds it is a very powerful and calming activity. This is especially the case when you are not quite the perky self you hold.

It is also a way of assessing what is going on in your life. Look at how many medicines. The injections, the

Monday, August 13, 2007

A bump in the Road

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along." You must do the thing you think you cannot do."
Eleanor Roosevelt

Saturday, August 11, 2007

Les Surgeries Accouterments

When anyone has surgery there are several tools/accouterments that one needs; or is required to use/take, these include medicines, etc.... Below is a summary of the objects I have used and found useful for lower limb surgery.

I never expected that during my life I would be come an aficionado, fetishists, or expert about these things, but, alas it is an area of rare expertise. :-)

This is the leg machine. Affectionately known as CPM. Thankfully, this time, I only have to be in the CPM, running approx 6 to 8 hours a day, for 1week, as opposed to the usual 8 weeks. Yikes. We are also demonstrating the lovely, all season foot pumps. To be used whenever at rest (2 weeks post op surgery).

Additionally, most people who have ortho surgery need crutches. I highly recommend forearm crutches because they take pressure off the wrists.

After many years of trying many crutches I think these from are the best. They are light weight, ultra comfortable, have foam handles, great colors, and are very strong. And, they are under $100.00.

Another, very useful item for anyone who has lower limb surgery is the handy shower seat. It helps with control and comfort in the shower. Before I sit on in the shower, I run hot water over the seat so that I sit on something warm rather than chilly plastic. . These can be purchased at any Ace Hardware, in a pinch. Also, if money is an issue or you have time you can borrow one from a local medical non-profit, such as the local red-

Also I highly recommend these flexible ice packs.

Wednesday, August 1, 2007

A surgery surprise !!

As of last week I was focusing on rehab for my hip. On Wednesday evening I visited with my hip doctor, Dr Phillipon, to discuss some very specific and pointed questions about my rehabilitation. Following that discussion, he decided with my knee doctor, Dr Steadman, to perform bilateral surgery -- right knee, left hip -- on Friday morning, a day neither were scheduled to do surgery. They are dedicated fellows. I had two of the most renowned surgereons in the world trouble shooting my condition, following a period of frustration of them not working together. Now, I am recovering with all the post recovery accouterments -- CPM machine (Continuous Perpetual Motion Machine), foot pumps, and copious medications to control blood coagulation, pain, inflammation, infection, sleep, etc......

Things related to my rehabilitation are akin to a glacier. Things move very slowly, and then, in a flash large sweeping events happen. It is mind blowing.

My family arrived from California the night I received the news to have surgery. I felt badly for them. We had such plans to go out and do things in the surrounding mountains, but alas that got postponed. And, I got frustrated. Being laid up and not in control are not my best suits. I have discovered that I really am limited in my ability to let go, not have things in the ways I am comfortable, and asking for help directly. A couple days post surgery I tried to maintain some normalcy and do/arrange things such as outings and group events, but that resulted in exhaustion and anger. Ultimately, it was counterproductive to the whole recovery process. So, after a 36 hour period, starting on this Monday afternoon of lashing out at the world, bemoaning my state of being (this is my 9th surgery in 10years), and being mean spirited with my friends and family I have pulled out of my funk. That was principally because my boyfriend said he might as well go home if I was not going to accept his help and push him away.

Ahhh, being human is quite an interesting experience.

Tuesday, July 24, 2007

rough road -- many questions

Today, was a more challenging day than I expected. Physical Therapy was difficult. My hip, 20months post surgery, was not terribly happy, nor were my knees. I had a long hard talk with the doctor's nurse and my PT team, and we are getting closer, it seems to let go of the necrotic hip. That was really tough to hear, although, I, somewhere in my heart know that is what may be necessary. (I don't even want to say it outloud).

Monday, July 23, 2007

The Trip to Vail

I arrived in Vail Valley, Colorado over a month ago, from Monterey, California to focus on medical rehabilitation for my hip and knee to avoid further surgeries. I have had 7 surgeries in 10 years to save my hip and knee joints due to the diagnosis of osteonecrosis or avascular necrosis. I am a 43 year old professional woman who has recently gone on disability. My primary orthopeadic doctors have been here in Vail Colorado for several years. They focus on "conservative" joint preserving techniques. They and their staff, especially the physical therapists are some of the most inspiring, talented, and motivated people I have ever worked with. That is why I have chosen to invest, my concept of a small fortune on stabilizing my poor sad left hip. I still may end up with hip and knee surgery if the rehab does not work. But this is all apart of the story. How it all got this complicated I am not sure, but it certainly is.

It has been long journey to come to this point. Actually, the whole journey has been a series of mini journeys. This segment is more dramatic, definitive, and focused following a couple failed attempts to stabilize my left hip. This segment started after nearly 18 months of struggling on and off crutches following a complicated hip surgery, dealing with a highly stressful changing professional front, and traveling to India for business. Shortly after the India trip, I ran into "a wall" that forced me to take stock and lay down the gauntlet. Sometimes you cannot have it all. Sometimes, you need to make choices, although they are not the "preferred ones" and face the reality of your situation. And, so, begins the middle of my journey.

I left California, my boyfriend, his kids, my dog, my house, my job on hold, in my pickup truck to complete this chapter and decide what surgeries or not are needed immediately, to face how I will move through the world once things stabilize, and ultimately to reinvent or rediscover myself.

And, so begins my written part of my story.

Thursday, March 1, 2007

The begining of this story

My name is Alex, and I have been diagnoses with a bone disease called avascular necrosis a.k.a. osteonecrosis nearly 10 years ago. The ironic part of this disease was that it is the result of medications taken for an alternate mis-diagnosis of Multiple Sclerosis, given in me in 1994.

10 years ago I did not realize how extensive the bone disease was.-- in terms os impacting my daily life, defining me in so many ways, a gift in some perverse sort of way, a galvinizer. There are so many adjectives I could throw at the end of the thought.

None the less, it is my life, for whatever it is worth. I can say that in many ways I am a very lucky person. I am surrounded by wonderful caring people. I have not been alone a single day since my surgery in another state,

It just seems like the gift that keeps on giving.

Twitter Updates