The insurance quagmire -- enough to make your sick!

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

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

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

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

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

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

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

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

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

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