My Life in the Bush of Doctors

Hard lessons of Cobra, Medicare, and "Qualifying Events" or All I want to do is go on a Honeymoon!

2011-11-07T18:38:00.000-08:00

Today, for the first time since my last surgery of 6 weeks ago, I was relaxed, lighthearted, feeling good. I was finally feeling like I could look across the horizon rather than being bogged down in my small recovery world. I was even preparing a blog post on healthcare issues I have been thinking about, especially a recent new experience I have had. A really positive one.

Great...I was starting to expand my life beyond immediate day to day dealings with healthcare, or the bureaucracy of healthcare...And, then ... you probably can tell...a Large Huge Bummer came from the sky....make that two:

#1: We have been living on my husband's COBRA since he was "separated" from his job. That is nearing it's end. He has been doing contract work, which has been good, but no benefits. We understood that we likely are eligible for an extension of Cobra due to my LTD (Long Term Disability), well today after countless calls over the last two months to the HR department from his company (which has been outsourced) we were told the "qualifying event" of my disability and receiving of Social Security had to occur within and only within 2 months of his being terminated, not after his severance ran out, or when we started COBRA etc.. so it is highly likely we will not qualify for a COBRA extension. The COBRA folks need more info from SS to determine whether or not we are eligible for "the qualifying event". Don't you love those words? I don't! (or at least do not find humor in them today)

#2 I call Social Security to get the needed documentation. They let me know when I started receiving benefits...which makes me think maybe we are not eligible for the Cobra extension which ends in 2 months. YIKES! So, I ask about the worst scenario case for me and my ability to get Medicare, since I think I am eligible. Well, apparently:

Since I declined Medicare, which I did because we had good medical coverage and I was trying to save money not to pay two premiums for medical insurance, I was told that for each year of not taking medicare I pay a 10% penalty fee. The agent said, "The good thing is that premiums are dropping next year".
I am not eligible for Medicare special enrollment (which means that you can sign up for it anytime if you have a "qualifying event"), because that is tied only to the "qualifying event" of my husband losing his job, not to the severance package period, or to Cobra benefit period. (Oh Shit)
I am eligible for Medicare "Open Enrollment" in January of 2012. I would have to pay the penalty of 10% per each year of decling coverage....and, only after 6 months would I be covered....so that means there is a likely scenario I will not have medical coverage (Medicare) until next July.

Well, there went my day... too pieces. Unfortunately I am not like "some" who can deal without coverage. My condition is in constant need of attending. Maybe I will have to throw the dice and hope next year slows medically down after each year of surgeries, sometimes a couple or more.

All I know is that the harsh reality of my life is that there is never a respite from constant medical attending be it bureaucratic or physical. I am pissed with myself for missing the boat on this. I normally am on top of all things disability, insurance, but I screwed the pooch on this.

And, today, as I hoped to feel the release of the grip of the chains, and stoke the joy I had from yesterday's Moose spotting on a drive my husband took me on, to have distance from being a patient and the shit that comes with it. I am back into the fray again to sort out the details and make the best I can out of a bad situation.

Not up for it today....and not sure how we are going to make this work. Other people do so I guess I have to figure it out or not. The bottom line is that I am sick and tired this whole thing is my life. 17 surgeries, fighting for benefits, fighting for rights, fighting for care, plan ole fighting. Thank goodness I have great doctors, from whom I have to travel 1900 miles, and pay for the extra rent. But that is good...I would not even be writing this without them.

I close this with....I just want to go on a honeymoon with the man I love (we haven't yet because we keep needing to go to Colorado, for my doctors to keep holding me together). He has stood by me, going through surgery after surgery, rough spot after rough one, and the continuing onslaught. I thank him and his encouragement for that. He is steadfast in times of trial and tribulation. He is a solid compass and always says don't worry, we are going to be ok. We have so far been so. I guess I need to rest my rage in his caring hands, even when he is unsure of his future....that is courage....and I should take a lesson in that.

Sometimes Even #Epatients Need To be Simply Patients

2011-09-16T17:29:00.001-07:00

Today I have been watching #med2 (the official hashtag) for Medicine 2011 at Stanford Ca light up my Tweetdeck. (There also appears to be another tag #med20.) There are so many great people there including Lee Ase, Susannah Fox, Sherry Reynold = @Cascadia , Coleen Young, Jen Dyer = @EndoGoddess and Bryan Vartabedian = @Doctor_V among so many others and too many to list. Earlier this week was The Mayo Clinic's Transform 2011 Symposium in Rochester Mn. with another cast of wonderful attendants. You can see the archive of tweets here: #txfm11 or read/watch more here. One session was dedicated to the Transformation Power of Social Media and talks about us patients as an underused asset. Both conferences included scholorships for Epatients. A number of them are members of the Society of Participatory Medicine. Alas I am/was not at either. I am bumming... And, this leads me into my topic, which is the strange conundrum that I face as a "patient/Epatient". It is a weird tension between wanting to be out there, having an active voice, and changing the world one bit at a time and sometimes your body, and the reason why you are an Epatient having to take the priority. And, therein lies the conundrum. (It is almost like the tension I had when I was working and managing my health)

This churn in my brain started several weeks ago when Nancy Finn = @nfinn8421 from The Society of Participatory Medicine, made a post about upcoming conferences (for the rest of the year), asking if anyone from the society was going to any of the conferences that the Journal of Participatory Medicine would like their contributions.

Upcoming conferences:
September 11-13, Rochester MN: Mayo Clinic Center for Innovation Mayo Clinic Transform 2011 Symposium

September 16-18, Stanford Ca: Medicine 2.0 Congress

September 18-22, Bethesda, MD: AHRQ Leading Through Innovation and Collaboration Annual Conference

September 20, Philadelphia, PA: e-Patient Connections 2011

September 20-22, San Francisco, CA: National Medical Home Summit West (new to list)

September 24-29, Nijmegen, Netherlands: E-Patients Boot Camp

September 25-27, San Francisco, CA Health 2.0 Fall Conference

October 3-5, Kansas City, MO National Academy State Health Policy 24th Annual Conference

October 7, Columbus, OH: 2001 Personalize Health Care National Conference

October 15-18, Boston, MA: American Academy of Pediatrics National Conference and Exhibition 2011

October 17-19, Rochester, MN: Mayo Clinic's third annual Social Media Summit with Ragan Communications

October 21, Washington, DC: Patient-Centered Primary Care Collaborative 5th Annual Summit

October 22-26, Washington, DC: AMIA 2011 Annual Symposium

October 27-28, Berlin, Germany: Health 2.0 Europe 2011

October 26-28, Washington, DC: National Congress on Health Care Clinical Innovations and Cost Containment

October 30-Nov. 2, Nashville, TN: 2011 Planetree annual Conference on Patient-Centered Care

December 5-7, National Harbor, Washington DC: mHealth Summit

This includes the preeminent Health 2.0 conference, put on by Matthew Holt = @boltboy and Indu Subaiya = @bluetopaz at the end of this month (follow related tweets @health2con)which I have been dying to go to for years, but haven't been able to do because of my health constraints ... mostly due to surgery timing, which seems to fall in Fall of nearly every year (for a host of reasons...mostly tactical). boo :(

And, that is the crux of the tension I have between being "out there" and needing to tend to the "home fires". As I move through this world of healthcare with a developing voice and want to be apart of the healthcare solution I find myself wrestling with wanting to participate in the larger dialogue and my body demanding attention in whatever form it takes that day, or stretch of time; be it too exhausted, recovering from surgery, doing physical therapy, going to appointments, which never seem to end, or whatever combo. And, that is a kicker.

I was so eager, "chomping at the bit eager," to apply for a scholorship for the Stanford Medicine 2011 event, then I realized that I couldn't in good conscience for myself and healing body and that was tough (just finished surgery and heading into another). I was mad for a few days, and then I saw Nancy's post, and I was more mad....then I got through it.

Ultimately I have to remember that the reason why I am apart of the discussion is because of my health issues, and frankly there is little I can do because yes, the body wins at times. And, apparently it does so for others. Look at @Marcela's post earlier today. The wonder of it all is that I can still participate in some fashion even if it is by reading my Twitter Stream, reading and commenting on posts, being playful with a twitter friend, even writing a blog post, and when I can more actively participate go to conferences, like the one I did in May for Mobile Health 2011. Also, I can encourage other #Epatients as I can, like those who received scholarships to the Medicine 2.0 Congress including Hugo and Marcela who I know are members of The Society of Participatory Medicine (I am sure there are let me know) and anyone else who has a vested interest in making our healthcare world a better place. Thank you Twitter friends who keep us up-to-date on health topics like today #med2. So, please contribute your experiences and let's make a difference by getting involved in our own healthcare to start and branch out from there.

I would love to hear comments, especially from patients who may struggle with the same issue.

A Synopsis: From Then to Now

2011-09-06T22:20:00.000-07:00

My Shoulder

My name is Alexandra Albin, I am what one would call an "e-patient" – which can be construed as a patient who is engaged, electronic, empowered.

I have an orthopedic condition called avascular necrosis – aka, Osteonecrosis: a painful bone disease which essentially results in dry rot of the bone which can lead to collapse. It is due to loss of blood supply to the bone and, in my case, a result of medications given for a misdiagnosed condition of Multiple Sclerosis. "Why?" is another question, but there is no clear answer. I have had 15 ortho surgeries and am currently both recovering from and preparing for another. Goodness knows why, but I keep trying to save my bones and preserve my mobility. Call me crazy. I was coming to terms not going to the Healthcare 2.0 conference in SF due to the competing priorities of my health and/need for timing my ortho surgeries for a host of entangled reasons, when I saw a post by @Regina Holliday about her #walkinggallery event. As I was wallowing in my misery, I asked her to make a jacket for me so I could participate in abstention. Read Regina's blog to learn more about her moving patient advocacy project. She asked if I had a post about all the surgeries I had and I realized I didn't. So...that is the beginning and end of this tale.

The Past:
In 1994, following a whole lot of life changing events and a sudden kidney infection (sudden in the sense that I did not realize it until I was really sick), I was ultimately diagnosed, by a highly reputable Neurologist in Santa Monica, with MS. I had odd symptoms, like a paralyzed bladder. I was not be able to void even with a bladder filled up to 800 cc. I had to learn how to self catheterize. Ultimately things got worse, I started to lose balance, among other odd things. The Brain and Spinal MRIs were all clean. Dr. Sheldon Jordan, based his diagnosis of my abnormal evoked potentials and my medical history (there had previously been odd neurological events). One of the several spinal tap tests were positive with white blood cells. Long story short: as things deteriorated, Dr. Jordan recommended having a Solumedrol Dose Pack for ten days; that involves daily three-hour drips, administered at my home. This was followed by tapering dosages of prednisone. That was one of the most awful periods in my life: literal hell! I was 34. After getting my career going I had suddenly become unfunctional and was taking drugs that jacked up my body and made my mind crazy. I became highly compulsive, angry, couldn't sleep at night (due to the speedy affect of the steroids) I had my entire apartment rearranged and had my piano brought home so I could relearn how to use my hands. Things got so bad that I couldn't hold a cup without dropping it. I ended up in a wheelchair for quite a while. And, adding insult to injury, I developed the classic side effects from taking steroids, gaining 20-30 lbs. Luckily I was surrounded by a ton of amazing people to carry me through a very dark patch of life. Then life moved on and I regrouped, and was back on my online educational career path. I had minor intermittent episodes of some weird neurological issues, but ultimately all resolved. I did do Beta Interferon for several years – to the tune of $1500 per month. (Thank you Dad)

The Middle:
In 1997, I started having pain in my legs, and thought that they may be MS related. Then we started going around to different neurologists to figure out what was going on. I ultimately saw an Orthopedic surgeon and a Neurologist the same day up at UCSF. The ortho said, "Well, you have this condition in both hips called Osteonecrosis...where the bone dies." The neurologist said, "Well you don't have MS, but now you really have something." So that became the medical issue of the moment...little did I know it would last fovever. Since both hips had this condition, the verdict is that the blast of steroids caused it.

That started the very long curvilinear process that has lead me to Now. And, the long and the short of it is that I have ultimately end up having over 15 orthopedic surgeries over the years, on hips, knees, shoulder, elbow, wrist to save my joints. All the lower limb joints have been directly related to the bone disease. The upper limb ones are unclear. Some joints were worked on several times, others once. Most have been bone preserving.

Most of the surgeries where performed by doctors in Colorado, who I accidentally came across in 2000 because one local Dr. had the guts enough to say to me (when I learned that I had AVN in knees too), that I should not see him or any other local and go to Dr. Steadman in Vail Colorado. And, since then it has become this weird second part of my life. Some people have go to their Mecca. I have the Steadman Clinic in Vail, Colorado. Other surgeries have been done in California. I have gone to the East Coast, up and down the West Coast to find top orthopedics who could deal with my issue. One of the specialists I saw in Baltimore (who has written lots of papers) was more concerned that I had not been referred to him by Doctor Steadman ("doesn't he know who I am?"), and that I had a pre-publication version of his article. He then recommended two surgeries, back to back – just days apart on both my knees. So much for Baltimore. (I don't care how talented you are). I was sent to Dr. Bugbee, in San Diego, because Dr Steadman wanted a second opinion before he and I started our series of knee saving surgeries.

My FVFG

I have had a host of different types of surgeries....I have had arduous recoveries and those that were a breeze. The first surgery was bilateral hip surgery with no weightbearing for 3 months. That was awful and dumb in hindsight. Ah Youth! I have had wildly experimental surgeries. In 2001 I had what is called "Free Vascularized Fibular Graft," where they harvested most of my fibula and implanted it as strut to hold up the hip head while providing a new blood supply. (you can see my missing Fib in the standing Xray pict above) That was a difficult 9 months recovery. Other experimental surgeries include one by Dr Philippon, when he implanted an OBI biomatrix plug (bioabsorbable bone graft substitute) to repair the large lesion in my femoral head, along with a series of microfractures, similar what they are now using in Rat models for growing bone parts using stem cells. AMAZING! (But, that did not work so well in me. Nearly two years on/off crutches = grouchy!). I have had a lot of microfractures, spent lots of time in a CPM machine, tried HGH, drank worm juice tea (chinese herbal recipe), acupuncture, ultrasound to help stimulate bone growth, had several PRPs (Plate Rich Plasma injection...a lessor form of stem cells... full of growth factors). I even had conventional procedures like a total hip replacement by a top orthopedic, whose "speciality" is failed hip replacements. That one didn't go so well: I now have a constant and pretty intense pain in the middle of my femur from a condition called "end of stem pain", that is a whole other story and series of problems.

Acupuncture time!

I worked through most surgeries; once while I was being rolled into ER they realized my laptop was still plugged in. I had to ask them to wait. I even went on an extended two week business trip all over India on crutches. Mind you, they don't do handicap very well there. They don't have elevators in most places even airports. The solution was to have me carried in my wheelchair up stairs and to the plane by a team of men. Imagine doing that while traveling with the VP of a multi-billion dollar company and your boss. That trip was my career undoing. Once I was home in the US I ended up in the hospital throwing a clot. OY! It became my body or my work. My body won.

One Year of EOBs

My Medical Records

Since that fateful trip in 2007 I have become a full-time patient. It is my job. It is my career. I often use the term I am the CEO of my body. I have learned the hard way the ropes of being my own advocate. Have developed enough confidence to make difficult decisions about a condition that is not well understood. I have had to scratch, fight, and claw for my rights as a patient, from dealing with the medical to disability insurance quagmire. I have also had amazing humane caring moments with caregivers throughout the medical chain and made friends in the process. I have learned more about beauracratic issues related to a chronic illness including CPT and ICD9 codes, dealing with those marvelous EOBs, how to get your medical records, how to correct coding issues, know what your insurance approves and disapproves of, and appealing a denied procedure (like my $33K Femoral Acetabulum Impingement (FAI) surgery that was denied by my medical insurance company – the same insurance company who sponsors the research that Dr Philippon is doing. As you enter the Steadman Clinic you see the "Aetna Hall of Champions" over the hallway with Athletic Jerseys lining the walls thanking the Drs for saving their careers. And I have had to deal with the whole package around what laws govern your insurance company and what rights you have to appeal decisions based on how your insurance plan is structured (ERISA anyone?). I have been nearly buried by my disability insurance company that tried to deny me coverage and even place surveillance cameras on me and my house. I have run the gambit of dealing with the Doctors' egos who think they reign supreme, or who don't like someone who asks questions, or misdiagnose you, or when they plain old run out of ideas (and don't have the guts to say so). I have learned that you can have good surgeries by mediocre doctors, and bad outcomes by top doctors. I have fully come to appreciate the fact that medicine is a hybrid of science, art, and human nature (the good and the bad). I have also learned that feeling safe with a doctor or clinic (whether or not they have all the answers) counts in spades. And, run when you don't really trust what you are being told or who is telling you (although that taps into that second guessing yourself piece, which I do a lot). And, I know I have still so much to learn.

In between and On the way to surgery

To wrap up this long tale...I am getting ready for another relocation to Colorado for surgery and recovery for 2 months. This is not the life I planned, but it is the life I live and I am doing what I can to keep it interesting and take the best care of myself that I can. Who would have thought being a patient could open up so many different journeys from deep sorrow to moments of epiphanies, triumphs, and connections. In that process I have really enjoyed becoming apart of the larger movement of the Epatient community on Twitter, FB, blogs, wherever. I never was much for support groups other than to data mine. I even joined the Society of Participatory Medicine. I thank so many people, near and far, for getting through this thing call life and for helping me take my story a little further than myself and raise it above the immediate. There times when that is tough, but that is the ultimate goal. And, I thank Regina for prodding me to consolidate my story in one place. Now, when people ask me I can say... Hey: read this long post...

FICO® Medication Compliance Score: #FAIL

2011-06-23T14:35:00.000-07:00

Today, on my list serve group at the Society for Participatory medicine, the question was raised about the NY Times Well Blog post by Tara Pope on FICO®s new Medication Adherence Score. I was also inspired by @epatientDave pointing out that @nyceve1 had a blog post this morning. FICO-scoring-millions-of-Americans-on-medication-compliance .

And yes I am angry...because if you look FICOs website here is what they say about their new tool, that is easy to implement. I recommend that any self respecting patient contact them, because they are not in the business of helping patients, they really seem targeted to the Pharma companies, and "Care Organizations" and "Health Care Payers" (I don't think they are talking about us).

Check out the tabs and pdfs for some fun reading...this is a dangerous tool that doesn't really meausre true compliance...if someone took the medication. So what if I picked up the medicaiton, or opened the glowing cap. As someone on the #SPM list serve group pointed out, "We will not be able to fix compliance problems if the denominator is as wrong as the numerator!!

The words that rub me the wrong way are highlighted in bold. Nor do they really say what data they are pulling...only the following: "third party data sources, name and address, prescription claims when available."

So, yes, I have got my cynical hat on....and my take away is (unless we revolt) Pharma companies are given tools so they can better target their marketing budget and relationships can be further leveraged with doctors ... and, enable deeper relationships with insurance companies who can have further control of what medications are on their formularies, or potentially use the data to develop additional criteria (of course they will use pretty words to make it seem fine) for dropping coverage for patients due to a poor FICO® score.

It is bad enough that Pharma companies sell their drugs direct to patients, and take doctor offices out to lunch...Anyone see the movie "Love and other Drugs"?

So, I sent them an email. Let's see what they say.....and you can too on their contact page or call US (toll free): +1 888 342 6336

Here is information from the FICO site: (Cynic Hat on)..... highlighted a sampling of text all in blue Oh, and its easy to implement....

FICO® Medication Adherence Score is a powerful tool for predicting individual consumer’s likelihood of adhering to a drug regimen over the next year. This fully HIPAA-compliant solution helps brands identify patients at highest risk for non- compliance, direct marketing tactics where they have the greatest impact on medication adherence and health outcomes, and maximize the return on the consumer marketing budget. While pharmaceutical marketers typically rely on self-reported adherence data to identify non- compliance, FICO can score an entire patient database or list quickly and efficiently using only an individual’s name and address. Many pharmaceutical companies help address this challenge through a variety of consumer-directed programs. FICO can boost the effectiveness of these programs through a revolutionary data-driven approach to identifying a patient’s propensity toward medication adherence. Using the same world- class predictive analytics used to create the FICO® Score, the FICO® Medication Adherence Score accurately predicts an individual’s adherence propensity using a wide array of third-party data sources commonly used by direct marketers in a variety of industries.

FICO® Medication Adherence Score leverages a patient’s prescription claims history when available and pulls on other third-party data sources when no other information is present. The result is a powerful and versatile score that can be applied universally across a patient base to predict each patient‘s adherence over the next 12 months. This tool enables care organizations to gauge the right level of action across the patient base to optimize care, case and utilization programs— setting a universal baseline assessment on which survey results or other information can be overlaid if desired/present. The result is a powerful and versatile score that can be applied universally across a patient base to predict each patient‘s adherence over the next 12 months. This tool enables care organizations to gauge the right level of action across the patient base to optimize care, case and utilization programs—

The Medication Adherence Score is available for common chronic conditions, including diabetes, asthma, high cholesterol, hypertension and depression. Harnessing the predictive power of multiple, rich third-party data sources, Medication Adherence Score improves the effectiveness of all intervention targeting efforts.

Recent FICO research has shown that third- party data sources can effectively identify drug adherence propensity and can enhance the precision of models using claims data only. While some of these predictors, such as age and gender, are known to be associated with disease prevalence and adherence trends, FICO has unlocked the predictive power of other data sources, such as retail purchase behavior, geo-credit profiles and income/wealth indicators. The result is a powerful assessment tool that works across a prospective, new or existing patient base with minimal information requirements.AA-compliant solution helps brands identify patients at highest risk for non- compliance, direct marketing tactics where they have the greatest impact on medication adherence and health outcomes, and maximize the return on the consumer marketing budget.

Learn how your organization can benefit from the most advanced analysis solution for predicting medication adherence. Email us at info@fico.co

Mobile Health 2011: What Really Works: A “Patient” POV

2011-05-10T22:47:00.000-07:00

This blog post has been accepted by the Journal for Participatory Medicine: Please review and comment there. Mobile Health 2011: What Really Works: A “Patient” POV

I'm Back....sort of

2010-05-11T09:41:00.000-07:00

I have really fallen of the patient advocate sharing wagon. Sometimes, dealing with life is such a handful that it takes all your energy to focus on tasks at hand rather being able to bring the experiences to a larger community context. Oh well, I do bite off more than I can chew sometimes. So, I am going to make an effort to simplify and do smaller writing/sharing exercises. Have no idea if it is possible or I an do it, but certainly will give it a college try. Got to start dealing with docts again and make decisions about what and how regarding potential new surgeries. All I can say is #wtf. It is tough when doctors simply look at you and shake their head saying how "unprecedented" my case is. That was the last two weeks and so I just closed my hatch to recharge and regoup. Ok...so now, I am sort of back.

Unexpected take aways from the E Patient Movement

2010-03-06T14:53:00.000-08:00

This post was started on February 19th and has been updated and reposted on March 6

Over the year and especially in the last several months through my meanderings and activity on Twitter I have crossed paths and have been honored to meet and converse with several people engaged in the "Epatient" movement a.k.a. Patient 2.0, which is really about how patients and patient advocates are partnering with their doctors to design/modify courses of treatments. They often using medical social networking sites such as Patients Like Me, ACCOR, PUBMed among many many other tools to find alternative treatments that improve the quality of their life, the patient's life, if not save it (as in the case of Dave). This was recently written about in an article in Time Magazine. These activities set in the larger context of the health 2.0 movement, using technology in a variety of forms to help make healthcare better, safe, more accessible, and transparent.

It takes a lot of guts and a special doctor to engage in this progressive new form of patient/doctor relationship. For instance @ePatientDave (Dave deBronkart) attributes his survival of late stage kidney cancer to this method. Dave has become a staunch advocate of patient particiapation and access to their healthdata. You should read his blog. He is funny and adamant about making healthcare more accessible. To Quote a recent comment he made on a post about Roger Ebert. " My task, is to go around speaking at conferences .... to wake people up about the fact that bad news is likely to smack their family in the face someday, and when it does, they'll want healthcare to work really reliably".

The movement includes those like @ePatientDave and @ReginaHolliday advocating better access to their (your) personal healthcare record (which can often be costly and impossible to get. Regina's story is poignantly sad. Her husband's death was due to lack of adequate access to her husband's healthcare record because of the patriarchal medical system (including doctors and insurance companies).

Alan Aviars, @Aviars is a computer programmer, who is relatively disgusted with the general inoperability of EHRs and the bureaucratic encumbrances it entails to work with/on them. He is a supporter of Open Source Technology. He has his own story about the struggles of retrieving his father's medical records, luckily things went better for his family.

There are patients who actively reach out to their doctors to create a proactive involved team to address their heatlth concern. I like Christine Kraft's, humor filled yet pointed letter to her doctors about the partnership she needed to have with them to address her care. You can follow her at: @ChristineKraft. Or read her rich blog that parcels out ruminations of all things philisophical.

There are researchers who write about these topics that, I think, really bring it home, like Susannah Fox a.k.a. @Susannahfox, of the Pew Internet Research Center, who wrote a piece at the end of January called What's the point of Health 2.0 , essentially stating that technology is not the only answer, but it can be one of the tools in the toolkit to help patients acheive better outcomes. The trick is to find one or some that work for those that are less than hyper engaged patients. Remember, Felix the Cat, with his bag of tricks.

There are energetic startup folks, like Jen McCabe, @Jensmcabe, who is trying to create better health with micro-movements throughout the day in a game/challenge format, called Get Up and Move. It is a lot of fun, try it. You can do it via Twitter and Facebook.

And, of course there is Brian Ahier, @ahier, who passionately brings insight and context to the Government meets Healthcare technology debate through his blog http://ahier.blogspot.com/ and Tweets. These issues are especially relevant because the government is spending money via the HITECH Act (Health Information Technology for Economic and Clinical Health Act) under the AARA (American Recovery and Reinvestment Act) to support the development of EHRs (Electronic Health Care Records) that meet a set of criteria, including "meaningful use". All very complicated. If you want to learn more about this, definitely follow Brian's posts.

Finally, yesterday (now a couple weeks ago), I read a post about a woman who would not take no for an answer. The post was called: "Some People Don't take death for an answer" by @ePatientDave on the e-patients.network about Laurie Todd, who basically had to bootstrap her survival of a late stage appendix cancer. Her HMO who said there was no treatment for her condition. She found a source of treatment, had to fight her insurance company to pay for the treatment, and eventually won and underwent treatment and has been recovery so far since 2005.

Her story is what inspired me to write this post. Frankly, right after reading her story, I got deeply depressed. I was so impressed by her accomplishments that it brought out in me my failure to have my experimental procedures overturned. I looked at her website and looked at the points she made about how to win an appeal. I laid awake at night going over what I missed in my recent failed insurance appeal. One for nearly 30K, I wrote three appeals for a total of 2 reams of paper (including all the supporting literature for my procedure, the procedure is the only know treatment for the condition, and it is supported by other major insurance companies -- I had the top Aetna insurance....they paid for all other 13 surgeries, I digress). I thought I tackled the definition of experimental treatment according to her method. And, all I could do is think why was she able to make a difference and why am I not.

Then finally, I got to thinking that some of this pity party has to do with battle fatigue. Because, frankly, I am. And, that is why under these times, I try, after I have beaten myself up good, to lift my head up, to look across the horizon to see what others are doing out there. Then, I sit back and give acknowledgement to those who, through their stories, have enriched my life, given me hope, gotten me really excited about healthcare and making a difference. They have embraced a stranger, shared stories, cheered me up, made me laugh so hard, and whom I can and have learned from. That is when I remind my ego filled self that their successes don't take anything away from me. It is not a reflection on me.

These patients and people make me realize that I am not alone, and that we are all apart and contribute to the matrix of life, inspiration, and in this case better healthcare for all. There is so much to live and fight for. It is not a time for me to crawl into a corner. My condition (including the bureaucratic mess) makes things difficult, but I am not going to die, unless something goes wrong in surgery, or whatever. If people who face life ending conditions can fight not only their condition but the bureaucratic machine,and win, survive, and create transformative experiences from their battles, I should be able to muster the courage and keep on truckin, knocking down what walls I can.

I am humbly reminded that we are all connected, and in the bigger picture we suffer if we denigrate our individual failures and successes. We need each other to keep sharing, fighting, pushing back, laughing, building a disparate and diverse community of people who deeply care about making a difference for themselves and ultimately for the better good of man.

I can now sit back and say. "It is a good day to die"-- remember that movie line?

The Cluster F*ck of the Healthcare Summit..Why the President, GOP, and Democrats need a mediator.

2010-02-25T19:37:00.000-08:00

Today I watched the healthcare reform summit. I have never watched the political process played out. Overall, I thought it was interesting, but was amazingly dismayed to the extent that they... the Republicans, Democrats, and the President are fundamentally so philosophically far apart. The Repulicans want to start from scratch and the Democrats want to push this thing through.

I have so many reactions. And, as a novice to all this am not sure where to begin. So I will post these basic points.

Sen. Jon Kyl, a Republican from Arizona, said it quite well:

"We do not agree on the fundamental decision about who should be in charge," he said. "We all agree on eliminating waste, fraud and abuse. Of course we do. But it's how you go about it."

While the president was mediating the process there was really nothing fundamentally agreed upon except... some concession to limits of malpractice (major Republican point) and allowing states to experiment with alternative means to resolve lawsuits. And, of course...yes, we need reform.

My problem with Obama and the Dems combined is that they want reform no matter what.
Obama dings everyone on special interests and non bipartisanship and campaign shit, yet he get's bristly when there are criticism about his plan. While the Republicans are so entrenched in the notion that it is unAmerican to have everyone purchase health insurance, which I find a ridiculous position. We all have to buy car insurance, don't we. I believe it is illegal if you don't have it. So, why not health insurance? Especially when medical costs are 17% of the GDP.

There was a lot of discussion of purchasing pools and the best way to manage such agreements. I absolutely agree with leveraging purchasing power. That is a standard business cost saving tool, be it a pool for independent small business owners among other techniques to keep the costs of buying insurance down. No brainer there

And, so it goes. It is quite a debacle. Where do we go from here? I don't think much more than continued entrenchment in positions that are getting further hermetically sealed. Too bad that both sides are so stuck on their position statements.

Although I believe that healthcare reform is overdue, I do think that care must be taken to ensure it is done reasonably well. While I applaud the Obama administration for tackling this head on, I don't think passing a bill without support of the Republicans is a smart way to go. It could cause more alienation.

Based on the following Twitter feeds #hcr and #hcsummit I am amazed how negative many of the responses are. Yikes. Do I live in this country.

I wish I had more poignant points to make, but as a newbie, this is the best I do. The WSJ had a good article . And, if that is not enough You can watch here for highlights.

The Ten Point Plan of the Year:

2010-01-11T11:52:00.000-08:00

As I started out this New Year and since I have been out of the work force for so long I am in the process of determining what to do next. For me to do that I need a plan. My challenge is how distracted I get. I have far too many interests but I seriously have to take into consideration the forces of practicality.

I want to create a conceptual map of where I want to spend my attention and make and effort to focus on those essential areas.

What I have discovered so far about my goals:

Define a set of particular areas and stay focused w/in those areas. Do activities to support those activities
Healthcare

IT (patient support tools, EHR, social networking)
Management (need a degree)

Ekosys:

Build Site
Design pots, terrariums, other uniqe arrangements, landscaping

Define what you don't want:

I don't want to return to the publishing world.

Want to learn CPR and get CERT training
Get active in local community activity

New Monterey neighborhood association

Get a job

Network, blog, Twitter: 2 to 5 contacts a day
Blog more regularly on work related activities

Get more personal balance in my

Meditate
Track physical activity and ups and down everyday

Get Stronger in bad joints

Add 1 to 2 more classes per week
Start hiking

Plans for next home projects

Looking backwards and Forwards at the Same Time.

2009-12-31T10:28:00.000-08:00

Every New Years Eve I try to sit, look back over the year, and write. Sometimes it gets committed to paper but often it remains as disintegrating memories in my head. Today, on the cusp of a new decade I thought it really important to take a moment and look back and forward simultaneous. Is this what being in the moment is all about?

First I start with a brief synopsis (if that is remotely possible). Ten years ago today I was in Monterey with my partner Guido. We had just finished laying 2 tons of stone pavers in preparation for a New Years eve party. My friends Julia and Morgan were up from LA. Ironically and very accidentally I am now down in LA at my friends Julia and Morgan's house preparing for a New Years eve party. They now have two of the most adorable kids and I am so happy that I get to be part of their lives.

Heading into the year 2000 I was staring down the barrel of unveiling the extent of my rare bone disease and unfurling the methods available to me to address the collapse of my joints. In 2000, I had the first of many experimental surgeries and hard roads to recovery. The first was a vascularized fibular graft. They took my fibula out of my leg and stuffed it into my hip. That was trick. I returned to a company that had undergone a near transformation (meaning I knew few people who worked there). Then in 2001, I found out I had the bone disease in my knees on a trip to Yosemite, started a new career in intellectual property rights. I got laid off and rehired into a new publishing organization-- Thomson Learning. I met Dr Steadman and Dr Philippon in Vail Colorado. That was the beginning of quite a journey. I traveled back and forth to Vail Colorado more times than I can even count to repair and halt the destruction of my joints and bones. I managed a career that blossomed into something wonderful. So many terrific talented people...Carline Haga, Netty Hoglaund, Andrew Clowes, Larry Molmud, and all the other creative smart people at Thomson Learning. In the midst of things my relationship with the man that I thought was the man I would spend the rest of my life with imploded and a new relationship developed. Since then, I own my house, have a loving relationship with Larry and his 3 kids -- we got married last October, I left my job in 2007 to take care of my body.....because it wouldn't let me do it otherwise, and at the end of a series of difficult surgeries -- 14 to be exact -- on hips, knees, shoulder, elbow I am hoping that staring into 2010 that I will reinvent myself and see myself looking forward to a new career in Healthcare using what I learned in 10 years at Thomson Learning and what I have become passionate about -- healthcare and the use of technology to better enable the healthcare transaction between doctors and patients.

So, the month of January is going to be about laying the groundwork and goals to start getting my body stronger, since I am finally seeing hope. And use this blog as a tool to help form my thoughts around the direction I plan on shifting my career in. (I actually can say those words for the first time in a long time). When you are so focused on pain management and recovering from invasive surgeries there is very little else that you can focus on. I am really excited that for the first time in 10years I am not facing imminent surgery. I see hope and possibility. Granted that might change anytime. But, I will take what I can get.

MoveOn.org Political Action: Stop the gift to Big Insurance

2009-12-11T11:18:00.000-08:00

MoveOn.org Political Action: Stop the gift to Big Insurance

I have been a bit hunkered down, but am resurfacing to take on the "good" fight....and add my support to making a difference. And, one of those steps is healthcare reform. I never felt moved to be politically active. But, after my experiences in the current healthcare environment, I have been moved. And, the system needs to change. So, if have called my Congressman and Senators to add my support to retaining the public option. We need to create a competitive environment. Currently insurance is run by a few major organizations and they are primarily in it for the profit. So, we need to change that. Right now, the public option looks as good as any....

Tips for Understanding your Medical Insurance

2009-07-16T10:25:00.000-07:00

Dealing with and understanding any medical insurance requires some talent, patience, and mostly perseverance. What happens when you have to change policies? That can be a stressful experience.

Recently, I had to change from my fabulous traditional indemnity policy (straight 80/20 split) with no distinction between in- and out-of-network benefits) to what is considered by modern day standards pretty darn good insurance a PPO - Plus (boo hoo). The "Plus" only means you have additional out of network benefits.

After I whined and moaned for a while about my fate, I decided to bootstrap it and understand the new animal I was dealing with. And, boy, can it be complicated. Pay special attention to the language; it can be very obfuscating.

Here are some basic questions for the insurance company

How do copays work? Do they apply to deductible? Most don't. That is simply what you pay out of pocket. Your deductible is the "co-insurance" part of the deal
What is the definition of in-network and out-of-network benefits? It is important to understand what they mean by whatever breakdown figure they use (for this example I am going to use a 70/30 split).
What you will ultimately pay is not necesssarily based on what the doctor bills you. It is dependent on what the insurance company deems as "allowable". (And, all use different fee schedules there are no federal or state guidelines, although all insurance companies go off certain standard metrics).
So, let's say you get a bill for $150 for an out-of-network doctor. Your insurance company may say that $100 is allowable by their schedule. They base their reimbursement on the allowable fee of $100. So, that means they pay $70 and you pay $30. The other shoe that will drop for you is the $50 that insurance did not allow. The docts office will "balance bill" you that amount + your coinsurance. So, your total out-of-pocket costs will be $80. (Sometimes, you can get a doctor to write off that $50, but you have to be proactive and ask.). This is not the same as a co-pay.

The other part of the equation is to understand how you provider works with the insurance company. Usually, doctors offices know who they contract with and who they don't. Remember it is your job to ask, so you know what your cost could be.

There are many flavors of the same insurance company. Just saying Anthem won't get you very far. For instance, Anthem in California is only run by Blue Cross (not both Blue Shield and Blue Cross). You need the specific insurance info, which is determined by ID and Group numbers on your ID card. Those numbers do more than simply identify you and will let you know what the score will be. Think of it as your medical credit card with your personal rate information.

If you are not sure how your new insurance will treat a provider (this is usually only significant in the out-of-network scenario(s)) You can always ask for the diagnosis code(s) (ICD9) and procedure code(s) (CPT) the docts office will use for your treatment/visit.
Then go back to the insurance company and ask to run a test claim. That should give you a good guideline on how insurance will pay. When you do this, make sure to ask if the call has been recorded, and always take good notes that summarize the discussion and outcomes (include name of person, date, and summary). Insurance companies always say that no claim quote is valid until it is completely processed. Good data is key. In the event that something goes wrong, you can point to the conversation you had. It is always more difficult to recreate your memory.
If you go to a hospital in your area, make sure you find out if both the facility fees and doctors fees are covered. Ask this of the billing department. The receptionist checking you in is often not a reliable source of information. I have come across cases where the facility is covered but not the doctor (i.e. radiologist, pathologist, emergency). It is a serious drag to not know this in advance. You think you are all covered, but then you get a $450 or more doctor's bill.
The hospital is generally not proactive in telling you this (unless you get someone who is on the ball, which in my experience is not very often.) Tell me, how many times have you asked the same question from multiple representatives of a facility or insurance company and gotten as many answers? Please note: Most say, that they do a courtesy billing. That does not mean that they are preferred providers of your insurance company.

These are some simple techniques to help you better manage your costs. Until our medical system changes and patients have better consumer control over their costs, these simple techniques have been the only way I have some measure of understanding and controlling costs.

I highly recommend doing these basic steps before you need to use services. An emergency can happen at any time, as I have found out the hard way. Once you get a handle on what the expenses are (especially your out-of-pocket ones) before you have any treatments, procedures, etc... you will be much better in control of your outcomes.

Never assume, always ask questions, because it is in your best interest to manage the nuances of your healthcare and be a better CEO of your healthcare and body.

The second guessing yourself game and the Havoc it creates

2009-06-10T10:56:00.000-07:00

Finally, I am going to get a lightweight wheelchair. I cannot believe that I am so excited. But I am. Mostly because of the satisfaction that comes along with it.

I started battling for use of a wheelchair during my recovery over 3 weeks ago. That was when I was told, at the hospital by the discharge planner, that was a durable medical good that was not covered by insurance, along with the shower chair, raised toilet seat, and wheelchair cushion. This was after I spent a great deal of effort to determine what my policy covers. I even, in the hospital, spent hours highlighting the insurance document to show the discharge planners what was covered. Something that they never looked at. Something they pushed me back on. And, a discussion I crumbled on, and nearly gave up the fight, mostly, I just didn't push for what I really needed (a light weight wheelchair). I accepted the 2nd best option – any old wheelchair. And, that was not very good for any of us. So, since we got it I re-geared myself up to getting a light weight one. And, I have. And, it is covered.

So, what is the takeaway. Don't second guess yourself. Don't doubt yourself, especially when you know what your rights are (as I knew by my insurance company's medical policy bulletin covering durable medical goods). It is easier to doubt yourself when you are not feeling well, especially in the face of pressure and a system that seems to run on denial. I know I buckled.

The good thing is that I regrouped, but it took 3 weeks longer to get what I should have gotten. Had I stood my ground I wouldn't have wasted the additional time (at least 8 hours in total) – day's wage – to get the right goods. So, next time I will stand my ground.

I wonder if other people do this? Maybe I am the only one, but I doubt that. HA!

Share if you have similar stories.

When you don't look the part

2009-05-30T13:18:00.000-07:00

During my last several hospital stays I have taken to wearing a camisole (helps hold up the chest) and loose yoga capris after the initial surgery etc .... instead of a hospital gown. And, boy has that caused a stir to the point of eliciting comments from caregivers. "Wow, you look like you are ready to leave." (on day 2 post surgery, while I am shuffling around with my walker). Or, you don't like you have anything wrong with you (What about all the IVs that are sticking out of me?).

I don't think people say these things to be provocative. I guess I get provoked. Sometimes I take it as minimizing my suffering or what I am going through. And, I do the same thing. I try to look like and act like there is nothing wrong with me so that I can pretend that there is nothing wrong.

It does raise the question/issue of how linked people's perception are to being sick, including my own. You have to look sick to be sick. It's weird. It is almost as if, the legitimacy of struggle/illness gets reduced when one does not look the part. That happens to me on a regular basis. When people see me in person, check out picts, especially when I do not have an aid in hand (crutches, wheelchair, walker, cane) then I must obviously be OK. "Oh, you must be doing better." When in fact, I often don't use a cane, because it hurts other joints, or I am too lazy, or whatever reason. I am in constant pain in so many places. But, because I am athletic looking, thin, long legged, I must be ok. When I went to the hip replacement class, prior to my surgery, two separate nurses checked to make sure I was in the right class. I insisted that I was. It depressed me, or should I say enraged me. It even makes me second guess myself. ..." Maybe I really am OK, and have no problems, or have lesser problems than I pretend I do ". When I allow those sentiments to grasp hold of me it can be deadly to the psyche and hurtful.

Its a conundrum. One of the many that I have had the pleasure, so to speak, of tackling in the experience of being a patient. Mostly I have come to accept the frustrations of my condition, there are times, especially when I am fragile that I react. But overall I have gotten to accept the humor in it all and so try to find the comical.

If I find myself needing to react. I slyly ask people, "Didn't your mother teach you not to judge a book by it's cover?"

If I didn't I would be in a very unproductive place.

Hospitalization Recap and Analysis: How you survive a hospital stay

2009-05-30T10:50:00.000-07:00

One would not think that lying around and recovery could yield so many different unique experiences including the good, bad, and ugly. But, it is true. I have had one of the wildest health and life adventures starting when I came out of traditional hip replacement surgery ten days ago, at Stanford hospital.

Veinipuncture: Each day a new vein supply had to be found since I kept reacting to the needless IV. They had to bring in the vein specialist, which took over 4 hours, who put my IV right in the bend of my wrist which really was unpleasant. At the end of it all I was left with marks and bruises all over my hands and arms. The first days my blood pressure was so low that I couldn't lift my head off the pillow without spinning out. That was fine, where was I going. Not far.

Rounds and Sleep deprivation: There was the usual routing of being woken up every 4 hours throughout the night to check vitals, and then of course as soon as you do fall asleep the docts start the rounds at a god awful 4 AM. I desperately kept the sheets over my head with the hope of sleepy some Thank goodness I brought lavender essence, an eye pillow, headphones, and my Ipod to play spacey music. (these were the essentials to maintain sanity and get some sleep).

Neighbors: Unfortunately I had a pain in the ass neighbor, who, decided because she was up at 5 AM, so should everyone else. She had no sense of others. Asking for coffee, talking loudly with the nurse at all hours of the night, and tweaking out when her friends didn't show up when she expected them to. She is the only neighbor in all my years of hospital visits that I wanted to throttle. I know I should be compassionate, but she really lacked it.

Pain Management: There was a young resident from the Stanford Pain Management Clinic, Carlos assigned to my case, who despite countless conversations with me still had it stuck in his head that I was on Methadone for pain management since last year. I kept reiterating that was not the case, but he clearly did not get it as evidenced on my discharge summary, that I needed to quit methadone. Clearly they are so immersed in their own process/bureaucracy that they believe their own bullshit. The pragmatics of that experience evade me. I guess because they wrote something down it must be true. Isn't that a logical fallacy? A couple of times the whole team of 5, including head honcho, would come in and talk to me for whatever reason. I will be curious what that bill will be like.

The EHR system, EPIC: Stanford now has a "sophisticated" and probably expensive electronic health record system. To provide meds, they have to scan your wrist band. However, when they record vitals, they only confirm your name. As a result I noticed last one evening that despite a nurse checking my name, was entering data into another patient record. WOOPS. She asked my name, but the name on the screen was somebody else's. Although in my situation it was not life threatening, it could have been. That definitely raised my blood pressure. It seems more foolproof to use the same protocol as they use with medications.

Nurses: Nurses come in all forms, good, compassionate, old school, those that go through the motions, and those that are somewhere in between. The last night I was there I had one unbelievable experience. It was the first night without a catheter and the first day I started ambulating with my little walker. I needed to go to the restroom and requested help due to the mobility restrictions and lack of stability. The nurse said, "Oh, just go to the bathroom on your own, and drag the IV rack with you using the walker." I didn't respond because I did not know what to respond with. Are you fucking kidding me? is what I thought and wanted to say. Finally, I got an nurses aid to help me. She left me on the toilet for over 20 minutes. Finally, I got fed up and tried to drag myself back to the bed with the IV rack in tow. Despite my gingerness, the IV rack got stuck in the wall mounted television's cords. I was so pissed. I tried tugging at my IV to no avail. I was stranded between my bed inches away and the TV. I wanted to teach them a lesson and was seriously thinking of ripping it out and having them find me on the floor. That would learn them, but maybe not.

Discharge Planner: Discharge planners come in many shapes and sizes. They are supposed to help you with the transition home and arrange for essential equipment to be brought to your home. They are very sweet, smiling, reiterating how they are here to help you, saying, "Please ask me any questions and let me know if I can do anything for you." When I asked for a wheelchair and shower chair (due to my restrictions and concern for preserving my other joints) the conversation went south. They said, "Oh no, insurance won't pay for that, you will responsible for the charges, it will be cheaper to get that on your own." I even spent several hours in the wee morning the evening before discharge highlighting the relevant sections, criteria, and codes of my insurance's clinical policy bulletin governing durable medical goods (DME) to show them what my benefits were. And, all I was met was with resistance. They wouldn't even look at the document. All they kept saying was that we want to help all our patients but you realize you will be financially responsible. I kept saying, "... fine, but please if the criteria are met, can you please use the codes and terminology that my insurance requires to get things covered." I believe, if I have insurance, I should get it to work for me as much as possible. For Christ sake, for a shower chair, the requirement is that I cannot stand, which I cannot. Finally, I asked, through a torrent of tears, what is the worst case out-of-pocket scenario for these items. For the shower chair it was $27.00 and the wheelchair it was $56.00 a month. That is far cheaper than purchasing on my own. The cheapest shower chair is around $45.00. At the end, I got what I wanted, but it was a horrid experience. Thankfully, I was right, insurance covered all the DMEs I requested. (I found out later through the case manager that my insurance company assigned to my case that the situation should not have happened. She never was asked what my benefits covered.)

So, that is a not so summary of the highlights of my 3 night stay at the great Stanford Hospital. An acme of California's medical systems. I remembered from my last experience how much I hate that system, and this time it was even worse. It is shocking. Everything is so specialized and no one seems to know what the others are doing. The continuity of care and follow through are fragmented. Dr Maloney's team, was at least on top of the things they needed to be on top of. This experience reminded me and reinforced the reasons why I have stuck with the Colorado team and Vail Valley Medical Center for so long. Increasingly I am thinking smaller is better. People are less disassociated from the larger picture and service is overall better. For instance, I prefer Ace Hardware store to Home Despot (oh, that is Home Depot). The prices may be higher, but you get good customer service and knowledgeable staff.

The lesson in this tale is multi-fold:

Don't blindly trust the system including the people in the system. It could have dire consequences.
Be educated about your insurance policy.
Make sure you know what is happening around you.
Be your own advocate or have someone else be your advocate.
Have notes written summarizing highlights of important conversations including names and dates.
Bring personal small comfort objects, whatever that is for you.
Bring earplugs and try to get the bed farthest from the door (very helpful for sleep).
Bring a good dose of humor.

Struggling

2009-05-26T12:38:00.000-07:00

I am 6 days post op total hip replacement. Although this should be a relatively easy surgery I am seriously struggling -- mostly emotionally. I feel like I am free falling and cannot get any firm hold on anything. The rest of my struggling joints are being hit hard by my weakened state. I am struggling with being overmedicated by the Stanford pain management team. Who I now personally hate. Since I came home, Friday, I have not been able to stay awake. It is a horrible type of drowsiness. Saturday, I woke up at 11am, then despite my efforts fell asleep during my uncle's visit, at 1 PM and slept through 6 PM. I desperately needed to wash up, but I couldn't be bothered, nor had the equilibrium to stay alert and upright. Basically the same thing happened Sunday and Monday. Yesterday I woke up for 1 hour and then slept until 6pm. This is so unlike me. I have never had such an extreme reaction to meds. Also, it brought along a serious desperate depression of not being loved, forsaken, raging jealousy across a wide spectrum of "things" -- not having children, no one sending me flowers, none of my friends calling (although my neighbors have been so terrific, and Larry too), why is my life so difficult?,why do my friends have such fine lives. you name it I am feeling it. It has been a very long time since I have plummeted so far and deep. I have lashed out at Larry and succumbed to my most immature reactions. So much anger and hate. To top it off, my brain is not functioning at all. I feel like there is a hole in it. I am clearly not firing on all cylinders. My negative experience in the hospital set the stage for a lot of these issues. Larry keeps telling me to let go, let it ride, but I am not succeeding very well. Every little thing is getting under my skin. This PM I have somewhat stabilized trying to hold it together. I yearn for so much and need so much. There is no filling the hole inside. So, I keep looking at the picture of Genesha that I have here in my room, the God who removes obstacles. I am looking forward to a little peace and hopefully happiness. I have struggled for so long.

OT: Support your Local Dump

2009-03-25T21:24:00.000-07:00

I have been needing to get some outdoor working cabinets. So, today I decided to take a trip to the Last Chance Mercantile shop at our local community dump. Instead I found a sea of 1970's vinyl and wood office furniture that could endure outdoor conditions. So, Larry and I purchased, for the sum of $20.00 a couch and two chairs. They are not the ultimate choice in furniture or style, but certainly worthwhile for the price and establishing an outdoor environment in our backyard. They are certainly weather proof.

It is amazing what people throw away. Every time I go there, I realize what a throw away society we are. I am fortunate that I do not find it objectionable to get some used item for a tenth or more of market value, that is not entirely perfect but can do the job, and requires elbow grease. Frankly, I find something very comfortable and charming about these finds. I have made many happy purchases at the dump including desks, countertops, lamp fixtures, vases, firewood, end tables, coffetables, decorative items etc....

So, here is a salute to community dumps. May they be all supported and fruitful as the one I am lucky enough to contribute to and gain from. It is humbling, exciting, and fun, but you can never expect exactly what you came for.

How much is my Time Worth in this land of Mediocrity

2009-03-02T12:53:00.000-08:00

Yesterday, I spent over 3 hours on the phone for one medical bill worth 270.00, that I am not exactly keen to pay because it doesn't seem fair to be dinged for a bill I recieved over 1 year post the procedure.

Increasingly we seem to becoming a land of abject mediocrity. Nothing is clear, followed through on properly, and then it seems to be spewed back at the consumer. This particular case is for a bill, from a provider of durable medical goods, that I frequently use following my multiple orthopaedic surgeries. Over the years I have seen nearly 5+ bills from this company that has an agreement with my insurance company. I have never needed to pay out of pocket, since usually, by the time I have surgery, I have reached my out of pocket max.

This time, something went really wrong. I received a bill over a year post surgery, stating that I owed $759.00, because I did not have insurance coverage at the time. When this came to light, I contacted them directly, providing them with the correct ID (you see my company went through a transition and our insurance cards changed numbers). I thought that should make this go away. Well....Not!

I generally take the stance if I do not receive a bill then I should be ok with said provider. After not hearing from them for months, I received a collections letter for the amount due. I immediately called, requested to speak to a manager, who immediately said I was responsible, I signed an agreement with them for the insurance ID I provided and therefore, if something was wrong I was responsible for the amount. This immediately sent my hackles up. First, they make you sign papers as you are coming out of surgery and full of anesthesia, with blurry eyes, and doped to the max. I typically do not remember what happened post surgery, so, how do I remember a specific number? It is like asking a drunk person to drive you home. Anyway, I didn't know the insurance ID changed (everything else from that surgery was completely covered). Someone got the correct ID. I told the manager that I had called previously with the corrected info, but apparently the info did not get reprocessed with insurance. He said there was no documentation of the call. (Now this is where a on top of it patient can go back and look at notes of calls and name a person that they spoke to and the date. Unfortunately I could not find any record of this conversation, so shame on me). the discussion spiraled into an I said he said conversation. At the end, I said this can be solved easily by getting it reprocessed with corrected info. He then started squawking about a penalty for late filing, etc.... Patients typically have a longer timeframe to have claims processed (usually 18 months) than providers (I think 6 months). He seemed to agree to let me do that and hold the account. I called insurance, explained the situation, and they reprocessed it on their end. I expected that they would cover the charges in full (as they have typically done for the same charges). In fact, I just received and EOB for same equipment for my 08 surgeries, leaving a zero balance.

Insurance did not pay things in full. Frankly, after looking at the math over the series of multiple reprocessed EOBs I cannot ferret out exactly what insurance paid. The $ don't add up. According to the company insurance left a balance of 271.59. I received a call from the collector last week to pay the amount due. I told them since insurance paid I would like to work something out with the provider (Orhto Rehab). They gave me a week to sort it out.

Part of me was thinking, shit, just pay it, and get this off your plate of things. I sat on that, but, the niggling feeling of injustice and that this just wasn't right sat with me. So, I rolled up my sleeves and started calling all the numbers for Ortho Rehab. I was thinking of finding a VP to complain to. I called a different number for Ortho Rehab for my current bill to see if they could help. The original call center, in Arizona, was not helpful. The Denver call center did not know about Arizona, so I was again stuck. My brain and irritation was driving me to distraction.

Then I had a bright idea, why not contact the sales rep who provided me with the "goods" for my latest surgery. She was nice. I did get her number. I called her, and she provided with a name of a person at the Arizona call center who may be able to help me out, or at least point me in the right direction. I contacted Mr Forrester. He picked up the phone. I explained my situation, he said he would look into it and try to help me figure out how to make this work to an amicable resolution. He was able to pull up my payment history, see how many times I have used their services, and wanted to assure me that they were about customer service. I said, wow, this is the first time anyone within the billing department took a big picture view, and that I was appreciative. We parted on good terms promising to resolve this in the near term.

And, so that is where things stand. I am not sure if the bill will be written off, but most importantly I found someone, who seemed to appreciate my situation, had initiative to look at my history, and was willing to do the right thing and figure out what happened, especially, given my history.

The lessons for me and others here should be:

Stay on top of complex billing situations.
Write down notes from any conversation you have with anyone about a bill or any complex situation.
Trust your instincts. If something doesn't seem right, it probably isn't.
Be creative about how you approach a problem. Or, sometimes doing the same thing over and over, you will get a different response.
Leverage your payment history (if it is good) or customer history.
Leverage insurance payment patterns if something seems different.

Now, I have to deal with several more of these types of bills, the next one is for $17K that insurance keeps telling me they did not receive the records they needed to process it. Although I have a note stating they had them in Dec. No rest for the wicked it seems.

So, how do we keep moving on.....

2009-02-26T09:38:00.001-08:00

Recently I have been regularly lauded by people I know and meet, including medical professionals about my endurance and great attitude. It is awkward to be told about my positive attitude these days. This got me to wondering and thinking about my attitude. I certainly know that when I started this journey, in 1994, when I was orignally diagnoses with MS, that I did not have a great outlook on the world. I did a lot of flaying, crying, and self destructive acts in the face of being really sick. And, boy, that MS episode was a real nightmare. I got really sick from the steroid drip, which unknowingly at the time, caused the future long term nightmare I am "happily" living.

When I found out I had this crazy bone disease in 1997, I did plenty of flaying, crying, and more self destruction.

Frankly, I have only gotten this far, in the end, because I seem to be quite stubborn, I had to take my life into my own hands, and I have a great support network of friends, family, and some key medical folks that have helped me along. I truly couldn't do it without that. Also, I have been fortunate to play certain cards rigth (certainly no easy task) to get the help I needed. That was in large part in the face of what most people thought was reasonable. How many people are willing to invest in their healthcare to the point of traveling back and forth to a remote destination (Vail Colorado) to seek treatment, especially without deep pockets? Thank you Mom and Dad!

After 9 surgeries there I have lost tract how much time I have spent/lived there. The last two years I have spent over 8 months in the Rockies? And, made some many great friends in the process.

More about Medical Bills and the Insurance Morass

2009-02-19T08:23:00.000-08:00

Following up to my rant/post yesterday I want to share two articles on dealing with the medical bill morass.

The first outlines some of the important techniques that can be successfully employed to help reduce out of pocket costs. It comes from a real life experience of a couple that tackled their spiraling costs. I have used a number of the techniques and it mostly works. Sometimes, like I said yesterday, it is random based on who is on the other end of the line. So, it always good to try and try again. 10 Ways to Cut your Medical Bills

Another article a couple of days ago addressed how a family member stepped up to help advocate for her brother. Negotiate Your Medical Bills And, through Htzpah, persistence, looking over an itemized bill for a hospital visit (that is enough to make anyone sick) -- Crimminy, up to $10 for a Tylenol pill. It is a sad state in this country that we have come to this.

In addition to some of the techniques identified I use the following:

Always, Always, keep notes for each conversation. Write, the date, who you spoke to, what about, and followup action item. This is useful when some action agreed to does not happen (no matter who it is) you can leverage that they said that they would do x, y, and/or z. Lack of Followup is great leverage.
When you review a bill, there are CPT codes associated with the charges, if the charge has been denied by your insurance company, find out why, then go back to the provider of services and see if they can legitimately change the CPT code (sometimes they can) and re-bill. That has helped save me money in a number of circumstances. Each insurance company has slightly different policies and coding. I am beginning to see this as a new pattern.

If all this too much to do on one's own, or if, one doesn't have a family member, there are always professional advocates, who charge a fee, however, the reduction of stress of dealing with, let alone understanding, EOBs ( "Explanation of Benefits" for the luckily uninitiated), medical bills, insurance policies, and negotiating down the bills, may be worth the up to $80/hr fee some people pay. Benefit Advocates Help Reduce Fees.

Those are my hot insurance billing tips of the day. Good Luck and give a shout if you have further suggestions or need help.

Random Resolutions: Keep on Calling your Insurance Company

2009-02-18T20:23:00.001-08:00

Most people may think that being a chronic patient allows for swathes of time and relaxation opportunities, in between medical appointments and other healthcare activities. Well, I can attest that is entirely not true. I cannot keep up with nearly anything. If I tried to not live any type of meaningful, proactive life, maybe there would be time. I have become passionate about not being complacent in the system -- this includes treatment, billing and insurance, and rehabilitation -- easily packaged as wanting to be an empowered patient, which is a full time job.

After all my broad medical experiences over the years, including treatment and consumer challenges I cannot simply blindly believe what anyone has to say, which can make me a pain in the ass to some, but my own best friend. It is exhausting and sometimes incredibly frustrating, but, if I don't do it, no one will.

There are so many times, I could just walk away from an insurance debacle or medical procedure decision and, just avoid dealing with them. And boy there are times I have, but I find I have to drag my sorry ass back to the table because I wouldn't be able to stand myself for giving up.

Here is a short story about dealing with insurance, which resulted in a success story, but when you consider the method of resolution I think it is immensely frustrating:

I have found nearly 9 times of 10 with insurance/billing problems the more I simply go back, make another call, find another operator to speak to, I can resolve my insurance/billing issue and have them pay, or get the doctor to write off charges.

Recently on one series of bills, it took 5 or 6 times of sending the documents insurance said they needed/didn't have to find out that they never undated the newer documentation in the system. In and amongst those 6 calls one insurance operator for Aetna, said, Mam, you need to appeal, that is all you can do. I threw my hands up, but several weeks later (2 weeks ago) I tried again, and finally got a reasonable rational result. The result I originally expected which is that insurance should have paid the charge. The bummer is that the result was merely achieved by persistence, nothing really savvy, but not giving up. It is frustrating because it is random. There is often no rhyme or reason and that sucks.

The lesson of the day: Keep on Calling!

AASTROM BIOSCIENCES INC - MarketWatch

2009-02-07T09:15:00.000-08:00

10-Q: AASTROM BIOSCIENCES INC - MarketWatch A possible treatment for early AVN. This could be exciting.

It has been so long, and where do we go from here?

2009-01-24T16:13:00.000-08:00

I have been thinking a lot about the direction of this blog. What's the point, why bother, etc. so forth. After a while, simply bemoaning the system and my personal health dilemma dashed with a little patient advocacy tips seems rather self absorbed. And, then, why don't I just write it in one of my binders. So, I am sitting back and reviewing how to reframe this activity, connect it more to the FB identity, and then there is Twitter. Everyone can write about themselves, the trick and purpose to writing publicly is to connect it to the rest of the world. That takes purpsoe

Health Care Law Blog: WVHFMA: Consumer Driven Health Care

2009-01-15T11:58:00.000-08:00

Health Care Law Blog: WVHFMA: Consumer Driven Health Care. More focus on Healthcare 2.0 What do people think about the impact of technology on healthcare?

The insurance quagmire -- enough to make your sick!

2008-12-02T17:33:00.001-08:00

Today, was one long day of digging into the insurance nightmare. I am boggled how medical billers (doctors, hospitals, any medical provider etc) charge the amount they do for services, or sometimes they don't charge for services. Sometimes insurance pays far more than I think they should, and other times, they have these bizzare rules that make, what seems like a legitimate charge ineligible. It is completely random. I have over 5" of Explanation of Benefits (EOBs, in industry speak) for this year. That is over 2 reams of 500 sheets of paper. It is insane. What is more insane is that I, as the patient, am stuck in the uncomfortable middle. There is no transparency in the medical billing/insurance system. It is totally fucked up! I as a consumer have almost no rights, which seems completely wrong. All I can go by is my hutzpah. Sometimes that only goes so far. There are times I simply pay because I am too exhausted to fight.

There are so many different types of billing schedules for every variety of insurance plans offered within a single company (i.e. PPO, HMO, traditional indemnity, other flavors of indemnity, etc...) and then add across all companies. It is insane, and a huge time synch to fight for your rights. It is bad enough to deal with a series of cascading health events. Then, add the stress of insurance. No wondering why our country is in the hole with medical care. I really hope with the new administration there will be leverage to improve (what I really mean is overhaul) the healthcare system in our country. I hope that some healthcare 2.0 initiatives take on insurance issues, including patient advocacy.

Web 2.0 and Social Networking Come to Health Care | Newsweek Health | Newsweek.com

2008-11-18T09:59:00.000-08:00

Web 2.0 and Social Networking Come to Health Care | Newsweek Health | Newsweek.com. I think it is interesting that there are so many challenges to innovating healthcare using web based technologies. But, it is a really exciting brave new world, and we are only at the cusp.

The test is in the pudding

2008-11-01T21:51:00.000-07:00

Somewhere along the line, I feel like I have missed some critical answer on a test with someone, something, somehow. And, i don't know what that was. There are some days that is the only way I can rationalize all that is going on. Logically, I think, I know otherwise, but these are the days when I actually speak to some higher power to get me through. Show me a little light, warmth, and protection. I actually recite the serenity prayer. When I do that, I know I am desperate. I guess desperate times require desperate measures (from my perspective).

This last Tuesday , in the midst of all my stuff, Larry had a significant fall. It has resulted in (by working the hell out of the system along with some really amazing people, like Dr Hackett and his team) a significant shoulder surgery including metal parts to put him back together again. I bet Humpty Dumpty wished there was a Dr Hackett for him. This all started as I was coming up for air from the last surgery nearly 3 weeks ago. Of course, this added another layer of spoiled ricotta to our diet. We had to move heaven and earth to pull resources together and most importantly take care of our worldly and dearest creatures, especially Enzo.

Thursday it was decided that Larry would need surgery, which requires quite a bit of immobilization in a funny arm sling. In order to accomplish the surgery in the time we have, currently in Vail it needs to be done by Tuesday the 4th -- that is next Tuesday. All agreed. Our challenge was to get the animals covered and help on our end here in Vail, especially since I need to get through my elbow surgery the following week. So, Thursday night, after many family conversations Larry decided to drive home and get Enzo and Misha (and take all the kitchen stuff we accumulated). That is a 18 hour drive. We packed up the house Thursday night. Friday morning Larry had his Pre op clearance appointment, which we are still not out of the woods with, since Larry smokes, drinks, has high blood pressure, and is near 50. By Friday noon, Larry was sent off in a comfortable car with our stuff to get home Saturday night (tonight), get new support at the house, and turn around Sunday morning to arrive Monday night. I, in the meantime, am trying to get the house together with two painful arms. In fact my body is wracked with pain in all the fun and game joints. So, to sum things up. I feel like I am being squeezed (once again) through a really small portal, which I am far to big for. So, there are a lot of rough points along the way.

So, this goes back to my first point of being tested. And, it only seems to increase and never stop. Is it me? The world (that is certainly happening these days), who the fuck knows. But, man, it is exhausting and stressful. I find moments of pure joy, when I find a great thing at the thrift store (like some cheap champagne glasses) that I can do flower arrangements in. it is followed by hard work. A lot of tight and important coordination.

My body and soul are so tired. We are gritting our teeth and getting through. The cost is high. And, I do wonder can I/we pull through this and everything else. How we are going to manage is a mystery and yet to unfold. And, I guess that is the larger metaphor (or only one). That really everything in life is a mystery, despite our efforts to plan the future. Like a lotus flower it will unfold and show us it's wonders. I am watching.

The Vortex of Despair

2008-10-19T09:59:00.000-07:00

It has been six days post op of the right shoulder surgery, and it has not been an easy road. The first two days were slightly more than typical discomfort, which I had been warned, then the third day I thought, I made it through and things were not going to be that difficult. Then, I had my silly grin wiped off my face and got served a dose of humble pie. That was Thursday. And, I was in excruciating pain, my swelling increased, and my tendons flared up. Every tiny movement in my right shoulder and arm down to my fingers sent searing pain through my arm and body. There was no escape, even very strong medicines, including oxycotin, oxycodone, and robaxin barely touched the pain; and ice, my personal favorite simply dulled it. It has been a long time since I have experienced that extent of pain -- nerve pain -- searing -- inflamed pain. OY!!! I say it in the past tense, because I think my head is above water now. I still hurt, but not over the top, out of place, sobbing hurt. I am just going to be very very careful not to move my arm too much, or my fingers, or anything in the upper right quadrant of my beloved body. Poor thing.

Thursday and Friday were the worst. I could not stop sobbing. To add to physical pain there was emotional pain (as documented by my last post). I spiraled into despair, feeling of abandonment by the universe and close friends, no one called, except my housekeeper, Pilar, or all people to check in. Of course there was Facebook to keep me warm. I diligently updated my status to elicit feedback, which I did, but, that is a weird pyscho/social phenomena. I think (know) that it distorts the meaning of friendships. It is more like a scorecard of coolness and quips. Yet, especially now, I frequently am looking it up, what other people are doing, saying, who they are commenting on. It is a pervaded and per-versed meaningful social connections. And, I am equally guilty. There are days I find it exciting and others depressing. It adds to the mood swings I have recently been suffering. And, I think as unhealthy as any other elicit substance out there. Oh well, we do have to stay connected like the rest of the schlubs out there. In fact, because my life these days is so confined to my physcial recoveries, FB is sometimes a marvelous distraction.....That is what it is....a distraction, I think, even under the best of circumstances. Hopefully, when I return to the living (or making one) I will feel less compelled to be drawn into the vortex (oh, I see, there is a theme).

Back to physical despair....it is tough, and I am not having a good time with this latest surgery. Overall, my body is not responding proactively, like it usually does. It all is out of wack...I am not finding a silver bullet to release me from my frustration. All I can do is ride it out, find hope and salvation in the small things, not be too judgmental, of myself and others, and mostly stay calm and breathing. Breathing would be very good and important to recovery. I can see I am doing better because I seem to have a sense of humor today, and I certainly haven't (owww, a twinge from typing). Ok, that is a queue to say adieu to the vortex of machinery and treat myself to warm running water to help release those poor spasmed muscles.

The Challenge of keeping on going

2008-10-16T17:34:00.000-07:00

It certainly has been a while since I have had the focus, energy, and surprisingly time to make a post. This is ironic since I am not a working professional these days. But, I have to admit, I am not sure where the time goes....

I do know I have had now two surgeries since the end of August. The hip repair has gone relatively smoothly, and now I am at the beginning of the shoulder surgery, and that is quite a new experience. it is tough. It is incredibly painful. I have been trying to not let it bring me down, but it is a challenge. It is not so much this surgery alone, but it is the whole package of ongoing surgeries.

Although I try not to let it get to me, and put a positive face forward, but my life is so much a cycle of pain, recovery, regrouping, physical therapy. It is increasingly leaving me feel disconnected from the rest of the world. Isolated, I have noticed that is has increased my feelings of not having real friends. At the same time, I know that they cannot really understand what I am going through. My primary connections these days are those I pay in one way or another -- physical therapists and other medical staff. That can add a layer of anger, disappointment, and frustration. That can be followed by feeling bad about feeling bad, which is a destructive cycle.

Some years ago my life vectored off into a place that few go. I have tried those chronic pain networks and my own disease networks. Mostly, I find those irritating and depressing. A lot of poor me's (that is mighty judgmental). At the same time, I can see value in people gathering together to vent. One, cannot always vent with and to their friends.

I have to go rest now. I needed to uncork the percolating feelings so that I maintain my sanity and keep on task. I am doing the best I can.

A day in the life of Physical Therapy

2008-09-22T17:23:00.000-07:00

So, when you go undergo rehab with Steadman Hawkins. You get to be treated to top end physical therapists at the Howard Head Clinic. Each of the joint teams have developed rehabilitation protocols for each of the specialized surgeries the doctors' perform. They work with all walks of life and levels of rehabilitation, from ordinary folk to elite athletes. I am always amazed, and motivated when working the staff. I have had the fortunate position to work with some of their top PTs, and I attribute a lot of my recovery, good humor, and subsequent ability to move through the surgeries to the Physical Therapy team.

Going to PT is an everyday job. For the first 3 weeks, I went everyday, including Saturdays and Sundays, two times a day. That was exhausting. Now, I go 4 days a week, for a couple hours a day. I am expected to do other structured strengthening exercises in the later part of the day, along with some activities on weekend. It is still exhausting and rehabilitation is an everyday job. Talking about nose to the grindstone.

The Patience of Being a Patient

2008-09-16T17:28:00.000-07:00

Being a "patient" has many challenges, mostly related to patience, with self, for others, and sometimes for the self. it is an especially challenging experience for everyone directly involved in the "recovery process" both for those of able body and not so able. Sounds like we are cleaning up after a "natural" disaster, and in many ways the very first weeks of recuperation requiring a lot of cleanup, especially, for those mobile helpers that have to bear so much burden. Without Larry's indefatigable help, albeit, occasionally grumpy, I would not be in as good of shape and out of a bad slump.

It is hard to realize, unless you have the experience of being laid up, how much we take for granted that we do for ourselves each and every day, from the simplest of reaching for a glass of water, throwing something into the garbage can, being able to walk into your bedroom to grab a sweater when you are chilled. I bet that we perform those mindless acts without thought over one thousand times a day. You only realize how much you do those things we you are "laid up" and having to rely quite heavily on someone else to essentially throw out your dirty tissues, and be your arms, legs, etc.

This is a really big challenge to negotiate between partners and loved ones, between laid up one and non-laid up ones. Patients (at least me) go through this difficult convoluted process of deciding what is too embarrassing to ask for. And, at the same time, they are stuck in bed screaming inside wanting to just be able to get up and pick up something. There is this terrible balance between being patient for things, able to request something, and not over requesting."Honey, can you get me a glass of water?... Oh, and I need a straw... Can, I have some crackers with that?.. Oh, can you reach for me that blanket?...I need more ice in the ice machine, the foot pumps stopped working..." It goes on and on, then there is the gratuitous stuff, like staplers, and highlighters, and magazines.

6 days Post OP -- Ok so now it is 7 days -- now it is 14

2008-09-12T10:14:00.000-07:00

Well, this has been a long haul. It is hard to believe that just over 6 weeks ago, I/we were put in the position to make the decision to come back Vail for and unplanned surgery. This was quite a surprise for someone who nearly schedules their life around surgery. Sad but true. On the left is what the livingroom looks like in the morning after I "scrabble" out of bed to head to PT. It has turned into central recuperation station.

In synopsis, the shit hit the fan July 18th.

So since then, we (Larry and I) have been grappling and scrambling with many complicated issues from setting up the house to be taken care of, along with Enzo, addressing changes in the kids visitation weekend, getting a house sitter, fixing the frigging leak in the pond, blah, blah blah, getting a gardener so that I don't loose the garden I started. It was like being squeeze through a tiny hole that neither of us were small of enough to go through. But, thankfully, despite multiple hiccups we made it through and I am here 6+ days post op and doing fairly well.

We literally left California, on August 18th, 1- not knowing if my disability payments would continue and 2- whether the surgery would be covered. (That was stressful). Thankfully point 1 was resolved, only because I was having surgery. Apparently one of my many doctors actually submitted a report stating I was capable of sitting continuously for 6 hours a day. And, to top it off, he charged me an arm and a leg ($800) for one office visit, of which he will not write off any amount. That is insult to injury. The insurance battle is one left for me to address once I am a bit more clear headed.

We arrived in Vail nearly 2 weeks ago, Monday. I had four days to get the condo -- 2 + multiple loft bedroom and 2 bathroom condo together so that it was functional and less cluttered. One of the challenges of moving into a fairly high turnover unit is that there is chaos in the kitchen and furniture is packed in. Additionally, there were many other mechanical issues we needed to address so that we could have a dining table and chairs that would hold together -- for that we worked with Ellen Eaton, one of the owners of Smith Eaton Real Estate who is on the ball and responsive. I would recommend her. And, since I am particular and need a certain feel to the environment I could not rest until things were workable, down to setting up a makeshift office space. We went to the Thrift shop, Walmart, and local consignment shops to setup house just so. And, we made it under the wire, when I got on my bike Friday morning to get to the hospital for surgery.

Now, ten plus days later, any many physical therapy sessions later (2xs a day seven days a week). I am beginning to be more clear headed and able to do something other than be attached to machines all day long, which is currently mostly the case.

When The Going Gets Tough the Tough Curl into a Fetal Position

2008-08-05T21:15:00.000-07:00

Well, that pretty much sums it up.
It has been sheer hell. I am in over my head. I am wondering what I am doing. I am going to Vail for more surgeries. Yes, MORE! The fun never stops.

Despite being given SSI from the federal government for my chronic medical condition (including osteonecrosis). My disability insurance company, despite having a slew of MRI test results, recommendations for surgeries, has suggested that I my disability would be terminated. The implication was, if I can ride a bike for 10 mins I should be able to work. Frankly, there are moments that I would rather have my legs chopped off, so I could have wheels instead. Really! I hate getting out of bed, sitting, walking, and getting up and down

All of it is a painful mess, consolidated in one body, at the same time. There are times I just wished to disappear rather than stand and fight for my rights and dignity. Hence..... curling up into a fetal ball is sometimes all I can do/want to do. There sis no rest for the wicked. As soon as you win one battle another bigger one looms, and frankly (to use the word I learned from my wonderful boss Carline) there are times I have nothing left. I am supposed to be taking care of my body and mind. It has become, so often, a burden to achieve. The mental and emotional energy to justifying my medical stuff, often takes precedent.

I am disappointed that my posts cannot be, these days, much more than spews of the immediate. There are so many exciting topics to cover from a patient management POV, based on abstracts from my experiences, such as the mistruths in your medical records (and how to correct them) -- yes this can happen -- watch out, and how to be proactive in your medical care (and when not to be) -- that can be a fine line.

It is time to throw in the towel for this round of battle.

Probably, if I can stand back, the lesson is how to choose your battles, and those battles you choose, be prepared to disengage.

That is the hardest lesson for me. OMhMhMhMhMhMhMh

The Highs and Lows

2008-08-01T18:28:00.000-07:00

So the shit hit the fan, so to speak, and my life has gone into quite a spin. A very different spin than I was planning.

At the tail end of my visit in Vail, co, with the fabulous medical folks, it surfaced that I have a major problem in my right hip now. I always knew I would have to contend with it at some point, but I was not planning now, in front of other scheduled events, including my wedding, followed by my planned shoulder surgery. Alas, my fucking hip has trumped everything. It was a weird experience. I got our of bed one morning to discover that I had consistent pain in a new place. I even got confused between my right and left leg. It was really disorienting. After quick Xrays, followed my an MRI the same day, followed by a consult with Dr Philippon and Dr Ho (radiologist) Saturday morning it was made clear to me that I had to address the right hip sooner rather than later. Quelle Drag!!!

Because we are not wealthy and the weather starts getting burdensome starting at the end of Oct. we have come to the dear realization that we need to hit the road and get out there so that I can have one of three pending surgeries (unless something else crops up), possibly squeeze in two. This is fucked up! This avascular necrosis stuff is for the birds. As such, so I can maximize my time out there, we need to postpone our wedding, at the end of September, and pack our bags and leave in two weeks, so we can squeeze in a trip through the northern US, I have always wanted to go to Wyoming and Montana to the Grand Tetons and Yellostone. So, that be the plan.

On the semi backwards good news front, I was awarded SSI, and received retroactive pay. I cannot believe, given how notoriously difficult the system is in awarding disability, that I got this in 6 months. OMG. I have heard it often takes years! This is good news, but it does seem strange to be happy that I have been considered officially disabled, by our federal government, so that I can receive benes. At least that relieves some of my pressure, and that is a good thing, as Martha says. So, with that news, I am quite done with the harriedness of the last 3 weeks.

Now, we prepare to move on, figure out the next steps, and find the good things in life....like a road trip through big sky country. I get to spend time in the Rockies (one of my favorite beautiful places), and hopefully bring Enzo.

So, there......bye for now

Beat as a Dog

2008-07-29T19:46:00.000-07:00

I cannot even see straight these days I am so overwhelmed with decisions. I dislike the position I am in, however, somewhat resigned. I am not sure if that is a good or bad thing. Probably does not matter. Sometimes when things get rough, although you have lots of booming ideas in your head it is difficult (or, more so exhaust) to actually share and diseminate those thoughts. Sometimes all you can do is go inward and hope that you will find safe harbor.

Since Vail I have been trying to figure out the best way to navigate new decisions and waters but I am simply still bobbing along waiting for a sign that we can figure this out.

Creating the Connected Patient: Cindy Tanenbaum with MedStar Health presents how HealthVault and a patient portal is improving the patient experience

2008-07-22T12:44:00.000-07:00

Creating the Connected Patient: Cindy Tanenbaum with MedStar Health presents how HealthVault and a patient portal is improving the patient experience. I found this article today on a patient portals webinar by Medseek about the role of patient portals in improving the patient experience. Let me know what you think.

Back in Vail Again

2008-07-16T16:26:00.000-07:00

It has been a while since I posted. I have had so many topics I have wanted to cover, but alas, life took over. So, I am writing this as I am sitting in the waiting room at the Steadman Hawkins Clinic waiting to see the doctors -- Dr Steadman and Dr Millet today. The doctors and physical therapists here are the best I have ever met. There is a level of consistency in the quality of treatment in all the different joint areas that I find unparalleled (and I have been searching, desperately to create that closer to home).

I have tried so hard to break the Steadman Hawkins clinic habit, but, I cannot seem to find doctors that 1- are willing to dialogue with me about the problems 2- are willing to think outside of the box, and 3- are willing to tread into non-standard treatment waters. (This is especially important when I am consistently challenged with perpetual joint issues -- first it was hips and knees, now we have added a problem shoulder and bilateral elbow problems. Christ, for a relatively healthy, strong, athletic person it seems very odd to be having all these joint problems. An additional component to the Vail cocktail (and sometimes the most important one) are the physical therapists that I have worked with. They are some of the most dedicated staff I have ever met. These are the staff of the Howard Head clinic in Vail. They focus on the patient, not on the clock. Sometimes I have had PT last for 5 hours and other times much less. Sometimes you have to wait, but I would rather wait for someone that is proactively trying to solve my physcial problem, rather than have an ontime appointment with someone who goes through a standard routine.

In the one session I had here today, they discovered a couple things about my knee mechanics, that no one ever thought of looking at. With scribbles on my knees, I stepped up and down on a platform while two therapists looked, measured, and tracked how I was mechanically functioning. In that process they were able to make modifications to my physical therapy program that have already made some differences in how I walk. I was once again duly impressed. (This is why I keep coming back).

The secretive world of joint replacements - MontereyHerald.com :

2008-07-09T09:34:00.000-07:00

The secretive world of joint replacements - MontereyHerald.com : Here is an article that caught my eye, and ironically, this is exactly what I was talking about with my partner yesterday. The close relationship (almost exclusive) that a doctor has with a particular joint part. This raises my concerns, because, not only do you need a good surgeon for a replacement, one also needs the right type of implant based on age and other factors. As such finding the right surgeon and right part for your body may not be as easy to find. This adds to the overall frustration of taking the step to get a hip replacement. I will add more later.

The Importance of Medical Records

2008-07-07T20:46:00.000-07:00

Last week, there was a family crisis.

One of the aging parents in our family took a terrible turn for the worse. As a result, the family needed to surround themselves around her to make sure care was followed through on, etc....

Among the myriad of challenges of stepping into an instance of geriatric care (trial by fire), especially of an aging parent, was that the elderly patient went to an Emergency Room that was out of her ordinary hospital -- Kaiser.

As such, the fear was that, when she went to her followup doctor, at Kaiser, she would not have the medical history of the emergency visit unless the notes were physically printed out and carried over, following all proper authorization/records release protocol, or the facility subscribed to a sister health information technology system as Kaiser hosptial. ( There is a compounded challenge when you are not the patient, and there is very poor documentation of Power of Attorney, or Trustee protocol.) This is the niche Google Health is trying to exploit -- medical record transparency.

This stressful moment happened when the family realized, as they were transporting to the main facility, that they did not have in hand, any of the results, from the 24 hour hospital stay, from the first hospital. The downside is that without medical records, the patient, is often victim to needing to have test reduplicated, since, one would hope, the primary care doctor, would follow a similar line of reasoning, as the emergency care doctors had.

The end result was that through some shinanigans and creative thinking we were able to secure the records within 2 hours on the day of Lilian's appointment. It was amazing. And, ultimately proved helpful. The followup doctor was able to modigy his existing diagnoses based on test results from the "other" hospital.

So, the moral to anyone's medical story is always, get a copy in hand of the records from your patient visit. They are typically available, from a primary hospital, within 24 hours. And, there are different cost effective ways to get copies of records. I step back when a hospital records admin staff says to me, well, if we send them to your doctor they are free, if you want them it is a $10 charge and $.25 fee per page. I say heck no. I have always figured out how to get my records legally and free. I refuse to pay for something/service that I have already paid for.

So, there is my pearl of wisdom of the day. Always, get your medical records.

(If you ask for them at the time of your visit, typically, a hospital, is required to provide them to you free of charge. You just have to remember to ask.

Integration Of Joint Replacements Improved By Coating Titanium With Polymer

2008-07-03T09:25:00.000-07:00

Integration Of Joint Replacements Improved By Coating Titanium With Polymer Interesting article on how to improve bone grafting to hip replacement parts. I am always looking for the latest and greatest. This site, Medical News today has a lot of good summaries of medical current events. So, I thought I would share this article for those of out there contemplating replacement surgery at a younger than ideal age.

Enjoy

What should we expect from a doctor

2008-06-25T09:36:00.000-07:00

For the last 5 months I have been interviewing doctors. Imagine that. See post below hunting for rabbits, or is it doctors and this post local ortho elimination process

We think of interviewing employees, nannies, schools that our children go to etc., but we don't interview doctors, who can have a big impact on your life, in more ways than the obvious. This becomes especially apparent with the chronically ill patient, because they usually have a much higher interaction with the medical community, usually have complex cases, and have a higher level of investment in the outcomes. Those people who go to the doctor a few times a year, or less, probably don't think too hard about the quality of their doctor's. (Or, I am just guessing)

After the first couple orthopaedic appointments I had early this year in CA I was so disgusted with the talk down to you approach that I decided to do what I have been needing to do and that is create a supportive medical team to help me navigate my increasingly complex medical situation. As I have eluded to in other posts this has been a difficult and often traumatic experience. Everyday brings new insight as well as more confusion when I interact with medical people. And, lately I have been doihng this alot. I have on average 3+ appointments per week. Some weeks I have had two a day, Monday through Friday. This includes maintainence appointments, such as allergy shots, chiropractic, physical therapy, and mental therapy. Then I have followup appointments with specialists: orthopaedic, cardiology, urology. Currently, I have a high rate of appointments because I have been trying to have a good team of people I can trust and rely on. The anxiety of not having that is very stressful. There are days I have been hopeful and there are horrible days, like when a doctor thought I was trying to be self important by seeing many doctors. I am beginning to believe that I am getting closer to creating a team of people who are thoughtful, compassionate, and will be a great support to my overall care. They may not have all the answers, but, they certainly seem willing to help me through the mess I am in. I have had to create a personal patient schema to keep track of the specialists that I need to deal with on a regular basis and how they overlap with other doctors.

I wonder if I am crazy sometimes because sometimes it seems I am pushing the system to do something that it is not designed to do. I keep wondering how do other people who have a long term condition that is less straightforward deal with this. There are days I want to crawl into a fetal position out of despair because I feel unsupported. Most of the local doctor's are new and I feel like I have to convince them of how difficult life is for me. Sometimes, I want to throw up my hands in despair and just stop trying, and crawl into a hole. Then there are those few occasions, when I want to throw my arms around a doctor and say thank you for hearing me, caring for me. Those are the doctor's that really surprise me! I get so prepared for what I think is a difficult conversation related to paperwork, or questioning of their proposed approach to dealing with my multiple conditions, and they simply say ok, no problem, let's try that. Sometimes, they even say, maybe they should talk to someone else. And, that is often times the most refreshing statement I ever hear. I got inspired to write this post after reading the following article Get Yourself a Thinking Doctor

Am I crazy to expect that a doctor should listen to you, not pretend to know everything, and ask questions to better understand what you are going through?

I have become increasingly amazed how doctor's actually think. On the one hand they say to me, boy you have lots of problems with your joints, or, boy you are a mess, and will keep us busy. On the other hand they think I am working full time after I have told them how devastated my life has become, and that I rely on my partner to take care of managing cooking, cleaning, grocery shopping. I just wonder who is listening. After those appointments I wonder what is wrong with me? I wonder, what did I do wrong? I generally come home dejected and worried about my future. These are the people who hold my future in their hands. OY!! Thankfully, those appointments get balanced out by those doctor appointments that hold a lot of compassion, understanding (or at least not dismissal), and feeling of care. And, those are the people that I move towards, embrace, and feel buoyed by in the midst of my own personal storm. That is when I feel calm and cared for.

So, what do other's experience? Am I the only one out there that is puzzled and surprised by the medical institution? Sometimes I really do feel alone in this mad mad world.

What do you do when a doctor says that you are not Ted Kennedy

2008-06-19T16:37:00.001-07:00

You write him and his boss a letter.

I went to a highly regarded Pain Management specialist in my area. I filled out the questionnaire. Signed all the release forms, answered all the questions the nurses had. Then, I sat in the exam room waiting for him. He came in, annouced that I was seeing too many doctors (which I already knew) and that I was not Ted Kennedy and that all I needed was a hip replacement. I did not need to see specialists. My jaw dropped, and I said but what about all the other joints that are causing me such difficulty? He said, "You just need to bite the bullet and make a choice of what is hurting most. I lost my composure, I teared up and started crying, sobbing, etc..... That was a first. In all the years that I have struggled with my medical problems, I never had someone, who did not know me, be so cavalier, opinionated, and generally gruff. He did mention that he was being tough on me. It took me several minutes to regain composure.

In hindsight, I wish I stood up to him more than breaking down and sob. I did tell him I was affronted by his behaviour. Frankly he was demeaning, unprofessional, and egotistical. Am I not important enough to have good quality care to help preserve my mobility? He apparently does not know what it is like to have several joints inflammed and non cooperative at the same time.

What was he trying to impart to me...that this is not life threatening and that I was not a deserving patient of his time. Oh, and was he making a judgement of the number of doctors I am currently seeing? Did he even enquire as to why? No! I did explain that I was working on interviewing doctors in my area to be apart of the team that helps me manage my lifelong condition of serious joint problems. And, he was apart of that process.

In the end, he provided some reasonable suggestions for means to help me deal with chronic pain in the joints. So, I am grateful for that.

This week I called the clinic back and spoke to the head nurse letting her know how angry I was by his behaviour. She said she heard from him what he said and she told him that it was inappropriate. Apparently he agreed and said he was sorry. She said to me, that she told him that, too bad the patient won't hear it.

I have decided this is one situation I am not going to let go silently. His behaviour, along with his posture -- slouched in chair with legs splayed -- was unprofessional. I am resolved to write him a letter telling him what I think. I will cc his boss.

There is no reason why a doctor should treat anyone poorly, especially a Pain Management Doctor. Thank goodness I have a fair amount of home support and am not suicidal. He raised doubts in me of not deserving good care, or being proactive about my care. I really hopes he treats his terminally ill patients with more tenderness. Maybe they are more deserving in his eyes.

Has anyone else had such an experience, and if so, what did you do?

It's no LOL: Few US doctors answer e-mails

2008-05-27T19:12:00.000-07:00

I came across this article a week or so ago. It's no LOL: Few US doctors answer e-mails from patients | ajc.com

I am really intrigued with this area of the medical management process. I love email as a mean of communicating and receiving information. I find I am more thoughtful about how I am communicating I am always surprised, that something that would seem like such a time saver, from the patient POV, would not be embraced by doctor's. It seems like such a no brainer. I have read there are security issues.... patient confidentiality challenges, and . While I can understand, I think it ultimately comes down to the fear factor of patient liability issues.

I am wondering what other people think about this issue. Please share your thoughts.

Google Health.COM

2008-05-20T18:08:00.000-07:00

Today there was an announcement about the launch of Google Health care. NyTimes Google Healthcare article. I am really excited about about the direction of the IT industry into the healthcare space. From what I can tell, this is one of the most innovative approaches to moving into this space, and could better enable healthcare management into the hands of the consumer in a way that will empower the patient. I obviously need to look further into what they offer and how they structure their legal agreement, in addition to patient privacy issues.

This type of service offering has enormous potential and potentially enormous pitfalls in relation to patient privacy and targeted consumer pharmaceuticals advertisements. See this article about the business skeptics: Google Faces Skeptics on Opening Day.

Personally, I have been a big proponent of moving the healthcare industry into the electronic space. I come from the information industry, and based on my personal experiences am really keen where this will all go.

Coming from the patient care and healthcare management perspective I really want to see something change especially for patients that have complicated healthcare issues, such as myself.

Although I love technology, I have found that when I go to doctors that have adopted healthcare IT solutions, that there is something missing in the doctor patient experience, especially when they are looking, typing, or dictating notes into the computer with their back to me. Here are some issues raised by Dr. Jerome Groopman in the following article: Do Electronic Records Impede Care. In addition read the following article from Australian news: For medical history, read hit and mystery

I foresee that the healthcare industry can only benefit from electronic record management, undoubtedly there are many powerful benefits of technology in the healthcare space, if used judiciously. Imagine emailing your doctors questions, getting a tailored Physical Therapy protocol through the internet, among other things. The flip side of the coin is that without interoperability standards will make this whole thing useless. If one system cannot read the information from another system there is no point in capturing the data if it cannot be shared. That is a common problem with technology, the ability to share information.....with other systems.

No matter what, we are moving into the technology age for healthcare. Google is making a valiant first stab at the problem. Here is a link to Google's explanation of what they are doing: Google Health, a first look I am going to review further what their service offers. The first thing that comes to my mind about how they have chosen their adisory board is that there are no patients, only doctors and healthcare admins. The exchange of information should not preclude the importance of patient input. If I had a voice, I would encourage the Google team to include a pure play patient, as opposed to a committee that is healthcare industry based. Here is the link to their healthcare advisory board: Google Healthcare Advisory Board

Local Orthopedic elimination process

2008-05-13T22:01:00.000-07:00

I have been on several doctor appointments over the last two months. Today was a follow-up with a standup local surgeon. There are some things that make me feel very comfortable and others that make me puzzle.

Today he determined that I have tennis elbow, or some other overuse disorder of my elbows. I have problems in my right shoulder that may or may not need surgery. I have bilateral knee pain, with predominant right knee swelling due to osteoarthritis, secondary to avascular necrosis (osteonecrois, avn, on, what have you). I have left hip pain due to avascular necrosis.

On the whole he made sense, up to the point when he said, on the one hand, I should not be pulling weeds, or other such work, and on the other hand, that he was not comfortable taking on the paperwork or bureaucratic management of my LTD. When he asked if I was working, I said that my body has become a full time job. And, that I cannot imagine how I could take on anything else. This truly has become a full-time job -- from Head to Toe, Knee to Elbow, Hip to Shoulder and whatever junctures inbetween. Wow. I really am, still, overwhelmed how to manage this process. it is hard to keep a business mind about it. But, I made a plan to follow through with two local orthos and try to create a support matrix here, at home.

Sometimes I think I am too deep and critical it makes we rattle my head. Sometimes I wonder if I am making this complex. I am sure, sometimes I am. On the other hand there are times that I think that is cannot be as complex it seems. I really am trying to focus on creating a local team of doctors to manage my case. I have been steadily working on this since postponing the hip surgery, due to the constellation of medical issues that cropped up. The progress seems so increbily slow. Despite my incredible frustration I am sticking to the plan. I do ultimately need a relief team. I feel like I have been in the trenches too long by myself. I am really tired.

Hunting for Rabbits (or, is it doctors)

2008-05-08T21:34:00.000-07:00

After my return and ultimately separation from the Vail clinic, I made a promise to myself to go through the diligent process of creating a network of doctors locally that can help me navigate my increasingly complex orthopedic situation.

The process has been an endurance race. I have had nearly 3 to 7 doctors appoints a week over the last 3 weeks. Two that I always have; allergy and chiropractic, sprinkled in with an alternative mental health maintenance appoint. The others have been to dealing with my ongoing UTI and attempt to establish a local orthopaedic solution.

The task turns out to be far larger (of course) than I originally suspected. Not only is there the physical aspect, but there is a largely mental and financial element to the process of, essentially, interviewing doctors. And, I am tuckered. So, I leave this piece for another entry.

Where is House when you need him?

2008-05-02T10:56:00.000-07:00

Have you ever had the feeling that you are just not happy with the care that you receive? Need a more supportive doctor? Or, a doctor that talks to you rather than at you?

Well that is where I am at. I am so tired. I am tired of not having proactive, intelligent medical team to help me navigate the increasingly complex world my body seems to choose to live in. I have lost control. I am along for the ride hoping for the best. And, trying to fight for the best.

On the orthopedic front, I have up to now felt fairly well taken care of by virtue of the team in Vail. With the separation from the team I fell so much more vulnerable. It frustrates me to no end.

Somewhere in my heart I believe that I should be able to surround myself with supportive, intelligent, and reasonably proactive care. Wow, what a concept. The fact that this is not happening is really maddening. As a result I need to actively pursue and ultimate go through a measured and controlled interview process for new doctors in those areas of care that I am particularly concerned about. I know it may sound egotistical, but, currently more times than not I feel like I could run around certain doctors methodological approach. i really want someone or someone's to take things off my shoulder. I feel increasingly burdened and a sense of no where to turn for a helping hand to lift me out of the morass of medical complications. Between the AVN, ON, osteonecrosis, avascular necrosis (whatever you call it) of the hips and knees, and the whole bladder/UTI, etc....I am sick of it.

Arghhh! just call me Lucky

2008-04-30T16:52:00.000-07:00

Not a good day. My right knee, which has minimal osteonecrosis has flared up, is swollen, and hurts when I step. FUCK! Yesterday it was just fine. I went for a 4 mile bike ride yesterday. Bike riding is the last bastion of freedom and exercise I have left. So I am bummed.

Feeling sorry for myself. Feeling a bit forsaken. Wondering why me? Especially with the looming concern of my right shoulder. Gosh, I really hope there is no osteonecrosis there. I really hate being so laid up. I feel like I am wasting my time. I know that is not what I am supposed to feel, but I am so frustrated with all this. So, for today I will relax, watch movies, and simply chill. And, hope for a better tomorrow.

New promising surgery for osteonecrosis of the knee

2008-04-03T10:13:00.000-07:00

I found this article yesterday on a new procedure implemented by Doctor Goodman at Stanford. Promising surgery for osteonecrosis of the knee. This is also in the resource links area.

The fact that this is coming up now is quite ironic given where I am at with surgeons/doctors. more to come

Big Decision -- postponing Surgery

2008-03-26T09:46:00.000-07:00

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

2008-03-17T10:06:00.000-07:00

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

2008-03-13T15:12:00.000-07:00

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

More expensive than it needs to be (which I end up paying for)
Takes an awful long time to resolve, and
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

2008-03-12T09:51:00.000-07:00

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

2007-09-28T13:22:00.000-07:00

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

2007-09-26T21:01:00.002-07:00

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!

2007-09-24T11:28:00.000-07:00

"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

2007-09-19T20:43:00.000-07:00

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

Rough Times

2007-09-18T15:54:00.000-07:00

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

2007-09-16T16:30:00.000-07:00

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.

Paperwork Saga

2007-09-14T16:34:00.000-07:00

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.

Time flies

2007-09-12T10:08:00.000-07:00

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.

The Paperwork trail

2007-09-01T09:41:00.000-07:00

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.

4 weeks Post OP

2007-08-27T17:17:00.000-07:00

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.

The Night Table

2007-08-20T22:17:00.000-07:00

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

A bump in the Road

2007-08-13T20:53:00.000-07:00

"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

Les Surgeries Accouterments

2007-08-11T12:15:00.000-07:00

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 walkeasy.com 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.

A surgery surprise !!

2007-08-01T08:17:00.000-07:00

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.

rough road -- many questions

2007-07-24T18:13:00.000-07:00

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).

The Trip to Vail

2007-07-23T17:54:00.000-07:00

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.

The begining of this story

2007-03-01T10:39:00.000-08:00

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.