Big Decision -- postponing Surgery

I have been coming up to my hip surgery and have become increasingly anxious....First, I am still dealing with the tooth extraction and titanium screw implant in my mouth, 1/2 my tongue feels like sandpaper. And, I am still having troubles with my UTI.

And, most importantly, I am unhappy with my new surgeon, Dr Maloney. Since the first time I met him I have never had a comfortable experience. He was so dismissive and waved away any concern that I had. When I complained of swelling and pain in my knees, after looking at my Xrays, he simply said I was sensitive to pain and sent me to the Pain Management clinic. When I saw them, they said....oh, we should put you on methadone.....(Well that is interesting, because that is a pretty heavy duty long acting pain killer, and it is used to help people get off of heroin). Who the heck is Dr Maloney to judge or even know me. He has only seen me two times and has not even looked at the MRIs of my knees. 

I have been so used to excellent care with my orthos in Vail, that this current experience really drives my anxiety. I lay awake at night blaming myself somehow for how the doctor reacts to me. Of course it must be my fault. Then, I go through periods of anger. Ultimately I am frustrated.

I am tired of the whole doctor experience thing. I have a GP that isn't very helpful. A new ortho, who is very insensitive. Through this process I have realized I have no good medical infrastructure close to home. and, I sorely need that. In my frustration I checked out a book from the library called, "How Doctor's Think". I highly recommend this book for any chronic patient. It helps frame the thought processes of doctors and how those processes can impact the doctor patient experience.

After reading the Introduction I realized I needed to break ranks and cancel my surgery to take care of my fundamental medical issues and develop a proactive medical infrastructure that addresses managing more core issues before I go off fixing my hip.

And, that is what I am doing now. I cannot tell you how much less burdened I feel by making this decision. Before I felt like a cow going off for slaughter. There is no reason why I SHOULD NOT HAVE caring doctors around me that can help me manage my condition....

I encourage anyone out there who is frustrated with their medical care to be proactive, not be afraid of doctor's feelings, and get the care you or your love one deserves.

What to do when a doctor has nothing more to say

My knees have been having a new cycle of symptoms that have replicated themselves a few times over the last year. I have had surgery. I have had physical therapy. I have had mental therapy. I swim, do home exercises, and other assorted mobilizing activities. I have had consultations with a knee replacement doctor, who said, essentially, that I was sensitive to pain and needed to go to a pain management clinic. Finally,  I asked my current knee doctor in VAil Co what to do. He had nothing to add. I was quite confronted with the emptiness of no response. Woah! That left me in a personal place of OK, Now what? Ultimately, this forces my hand to find a doctor locally that can manage my case and that has been less than easy and comfortable.

Bush Wacking -- a medical sidetrack

Two weeks ago I went to my GP suspecting I had a UTI. Historically, I have not presented standard symptoms sometimes to the point that I have ended up in the hospital with a kidney infection. Odor is the only thing that has helped me guess with near 100% accuracy that I have an infection. 

One would think that after 5 + years of experience and numerous dealings with me in this regard that my primary care physician, would get a clue when I tell her that..."I think I have an infection".  

Over the last 5 years she takes an in office sample runs a ph test often with negtive results, or conflicting results with the hospital's more extensive culture, or trace positive, to which she has sometimes not given me medication and other times a quick course of Cipro, which has sometimes worked and other times not.

The latest is two weeks ago I called stating I think I have a UTI. Her office assistant said she will need you to come in so that she could run a test. As usual the test was inconclusive -- trace positive -- so she wanted it to be cultured. In the meantime, due to my history she gave me a short course of CIPRO. I took the CIPRO. I received a call from the office person who said that the culture was contaminated and that I should be ok with taking the CIPRO. One week later I was still alarmed and had worsening symptoms.  I called her office to find out she was away. I was given a backup physician's phone number that I called. The nurse took my information and said the doctor would get back to me.  The next day I received a call from the 2nd doctor's office stating that since they did not know me they needed me to go to the hospital and provide a sample. I dutifully went to the hospital, provided a sample, and waited to find out......

The next day I received a call, saying that there were findings, the test was not conclusive that it was sensitive to CIPRO so they were getting a further culture and that my doctor (doctor #1) would be getting the results on Monday and she would get back to me. So, after two + weeks, two + test, and a short course of antibotics I am still waiting to here what is happening to me. I certainly hope I do not get a kidney infection.

The whole thing strikes me as absurd. This is modern day medicine after all. How hard can it be to figure out what bacteria I have and how to treat it. 

• How can a doctor that I have seen (much to my chagrin) for over 5 years not get a handle, a clue, an awareness of my unique symptoms and find a relatively straightforward solution? 
• Why do I have to continually jump through hoops that seem to be so rote that they serve essentially no value in my case? 
• How can doctor's after years of experience with a patient not modify diagnostic/treatment routines to reflect a particular patient's symptoms especially for something seemingly so simple. For Christ's sake this is only a f%$#@ng UTI. And, my doctor is supposed to be quite diagnostician. 

It raises my concern, my hackles, and my rage. I think this is a very small microcosm of the medical institution and how many new doctors operate. There is a disavowal of the patient's own self experience. One would think (at least I do) that after years of dealing with a situation, and with a high rate of accuracy rate of calling out a symptom correctly, that a doctor would learn to have some relative trust in me, the patient. (Over the years when my doct would say I don't think you have anything based on my in office test, I would say, I really think that something is going on, she would concede and get a culture that would show something). 

It is not the case I want to be right, show her, or any other doctor up. I just want to be listened to and not treated like a bumbling idiot, with the attitude of you are not a doctor so how could you know your own body. After years of dealing with medical problems I think I have learned to pickup on my symptoms. So, today I sit and wait, shake my head, and jump through doctor's hoops. The end result is the process is 

1. More expensive than it needs to be (which I end up paying for) 
2. Takes an awful long time to resolve, and
3. Smacks of futility. And, it really doesn't need to be that way. 

The lessons for me are to find a new GP that will listen and continue to fight for my interests as a  patient, and not give up. Sometimes I do  throw in the towel and accept mediocrity. But that has to stop. As a patient, one cannot do that because the consequences can be significant. 

Gearing up For Battle

I have an outstanding bill that neither the medical insurance company nor the hospital wnat to explain why I owe so much. In all the years that I have had insurance I have never run into such a large out of pocket expense. So, I am getting ready to fight the good fight.

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.

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.

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)

Overwhelmed

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

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.

Camping

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.