Break the Rules

When you hear the word bureaucracy, what comes to mind? Do you think of the DMV or some other government agency?  Our government isn’t the only bureaucracy, there are plenty of private companies loaded with red tape to make sure they watch out for  their “bottom line,” but the one thing they all have in common are rules to a game you and I are not privy too. That goes for health insurance companies and hospitals as well. They operate in a black and white world. You either fit their criteria or you don’t, and that can mean a matter of life and death. Yours. The ones who make the rules don’t care about your particular situation, and the ones enforcing them don’t question it, they just follow the rules… and that includes my precious UCI.

Luckily there are individuals who see the world differently and they know what the rules of the game are. I was fortunate enough to meet hospital staff who steered me and my family in the right direction to ensure I had the best possible chance of survival. If I just went along with the “rules” I wouldn’t be typing this post right now. Thank God for the rule breakers!  I consider myself Queen of the rule breakers and will pass along valuable information that you might need to know in the future (but you didn’t hear it from me 😉 )

When I was admitted in to the hospital I didn’t have health insurance. In fact not having insurance is what kept me from getting screenings (like colonoscopies) in the first place. Do you know the average cost is $5,000?  I can hear some of you thinking, “what about your boss? Why didn’t he offer health insurance?” I worked in restaurants and health insurance is not offered because it costs the company or small business too much money. Buying insurance on the individual market is too expensive as well, but this is not a post about the high cost of health insurance…so back to my story.

While I was waiting for a bed in the hospital, I filled out forms from different state and county agencies that might help pay my medical bills. Meanwhile I was given a bed in Tower Three and submitted to endless tests.  My son, James had arrived the day after I was admitted so I immediately turned over my healthcare decisions to him. He legally became my “Advance Directive.” In a nutshell, it means he made all decisions about my healthcare if I should start slobbering on myself and don’t know what day it is. I suggest you have one or two people you trust to do that for you when the time comes and I mean when the time comes because every one of you will get sick or hurt someday and you might not be able to make your own decisions, so do it now before some stranger decides for you.

On day two of my hospital stay I found out that I qualified for aid. A woman from Medical stopped in my room to tell me she reviewed my application and she felt I would qualify for aid but we wouldn’t know for sure for about six months. I would be getting more forms in the mail and needed to send back documents that proved I wasn’t cheating the system.  James told her I didn’t have six months to wait. I was stage four and time was not on my side. The social worker shrugged her shoulders and told him that was just the way things worked. No exceptions. Those are the rules. Bureaucracy.

Lucky for me, James doesn’t follow rules either so he left the room and went to the Medical eligibility satellite office located on the hospital grounds. He found another social worker and somehow James persuaded him to speed things up. I don’t know how James did it but he got all the necessary paperwork, brought it to the new social worker that afternoon and I was approved on the spot. So much for rules.

I now had insurance but now I faced a new set of “unspoken” rules. I learned if a patient is an outpatient approval for surgeries can take forever, but if that person is an inpatient the wheels turn much faster. It is in the insurance companies best interest to get that patient released as fast as possible. I was scheduled for surgery to “lap off” the tip of my liver (which is done in only a few hospitals in California – the preferred treatment for liver cancer is chemo) in five days.  I was feeling better from the blood transfusions and maybe was well enough to be sent home, but if that happened I probably would have had to wait until the doctor got approval from my insurance company and that would mean more “red tape.”

I don’t know who made the decision for me to stay put but I am thankful he or she did. I do know that several different hospital workers came to my room throughout the day and said, “You didn’t hear this from me, but if you are discharged turn around and go back to emergency. They will readmit you and you will be ok.”

I was hospitalized three times in 2011. My total accumulated stay was over one month. I learned a lot of how the “system” works and it’s geared toward the “house” winning — just like in Vegas. To the ones making the rules of the game its a business decision. To you its life itself. If you follow their rules you might not come out so good, so break the rules and find someone to help you through the maze of bullshit, I mean red tape. Make friends with hospital staff. They are the ones who can help you, but you have to be pleasant and I know thats tough sometimes when your scared or in pain, that’s where your Advanced Directive comes in. Make sure that person has the courage to be the “squeaky wheel” and at the same time remain pleasant to the ones who understand the game. Your life could depend on it.

In the mid nineties I temped for Cigna health insurance for a summer. I sat across from a woman whose job it was to deny claims… all day long. I asked her what she thought about her job. She loved it. The company paid her a bonus at the end of the year for doing a good job. I don’t know what that meant, but I think you get my drift. Everybody in the insurance biz is looking out for their bottom line. You are only a name on a file. Its nothing personal. Its the name of the game. Its up to you to fight for your life.

I now visit patients going through treatment. I hear the same stories from them and I’m sure it will be the same even with Obama Care. You need to learn the rules of the game. If you can’t get satisfaction, visit your state representative. Do not make an appointment. Show up unannounced. If you call first you will get the run around from them too. Its the job of our representatives to help you. If they aren’t available, they have staff that can do it.

Let’s say you are declared in remission or NSD (no sign of disease) you still need to get frequent checkups. I had to get monthly blood tests after my first Pet Ct scan was clear and I continued to get scanned every three months for the first year. I can now wait six months.  I will be under surveillance for five years (I don’t mean by the NSA… at least not to my knowledge…but just in case “Hello! Homeland Security!”)

I run in to people occasionally who had cancer treatments from other hospitals and were given a clean bill of health, but they weren’t monitored closely and they ended up at UCI after their cancer had spread. I’m guessing that’s because their insurance company has an efficient employee dreaming about how she will spend her bonus check at the end of the year.

I repeat — its up to you to make sure you are receiving the best healthcare available and that includes aftercare.

If you have any other questions, you can leave a comment below this post or send me an email if you don’t want the world to know your business. I do abide by the HIPAA laws. Some laws are good. But many laws today… not so much.

Be well!

Inge

You Become What You Think

Tomorrow is Gloria’s* funeral. I’m not going.

I met Gloria in 1989. We were “older” students attending junior college. We both had kids and husbands. We both loved politics and wanted to make something of ourselves. I divorced before I graduated and Gloria did the same a few years later. I went on to study at a university in the Bay Area, a hundred miles away and Gloria stayed in the Valley. We eventually drifted apart.

Fast forward to 2010. I was in the hospital and a nurse came in around midnight; she handed me a piece of paper. It was from Gloria — a poem about a guardian angel. Gloria called me everyday when I was in the hospital and we continued our friendship over the phone for the next three years.

Gloria told me she had a nervous breakdown a few years before I got sick and was on medication for depression. Within a few months our conversations began to revolve around her “problems.” Before I knew it she was calling me four times a day with a new crisis. I wanted to be a friend to her, after all she was my support system when I was going through hell. I figured somehow I could help her get through the hell going on in her mind. I don’t know when it happened but I stopped being her friend and became her counselor.

One of the things I learned while I was in cancer treatment was that managing stress is extremely important. I wanted to share what I learned with Gloria. She seemed to understand what I was talking about, intellectually that is, but in practice — no. The drama continued and seemed to escalate. I felt she was putting herself in  dangerous situations. Gloria seemed to not only attract drama, she seemed to get a thrill out of it. It upset me.  I found myself dodging her calls. Thank God for caller ID! I didn’t know what to do. On the one hand we were friends or were we? I hadn’t read any Buddhist literature yet, but I read lots of books about living a healthy life: body/mind/spirit. They all agreed that we are each responsible for our own behavior and taking responsibility helps us to stay healthy.  I had been doing that with my food choices and lifestyle habits. I wanted to do the same with my thoughts. I guess I wanted Gloria to do the same.

December 2013 I finally had enough. As hard as it was, I had to let that friendship go. It wasn’t a pretty ending either. Gloria was incensed. How dare I “break up” with her after all she had done for me when I was sick. I knew I did the right thing though. I had to think of my mental health first.

I got a phone call that Gloria died last week. Her friend who had grown up with her told me all the sad details of how her life had become such a shambles. I had heard those stories a hundred times before from Gloria. By now I was studying Buddhist philosophy and not only was I learning that we are responsible for our life choices but clinging to our past is bad for our well-being as well. There is so much written how living in the past or future causes unnecessary suffering. Gloria couldn’t move on. She constantly lived in the past. She couldn’t let go of her anger. If you ask me, I think her refusal to “let go” contributed to her depression. Her negative thoughts became her  addiction. Drama was her addiction. She didn’t hear me when I told her that true peace had to come from inside her. She clung to the belief that if everyone behaved the way she thought they should toward her she would be happy. We cannot control what happens to us, but we can only control how we react. Cancer taught me that.

I did a lot of thinking about Gloria this week. I am sad that Gloria never saw what her thoughts were doing to her. On the other hand she was a good teacher for me. I knew that I didn’t want to go down the same road as her. I am not saying that I don’t get pissed off sometimes or blame someone else for my circumstances but those times are getting fewer. Meditating and studying Buddhism helps keep me on track during those times.

I want to share with you some of my favorite quotes that resonate with me… maybe they do the same for you.

Sat Nam,

Inge

* Gloria is not her real name

Keeping My Mouth Shut

Probably one of the hardest lessons I am trying to learn is… keeping my mouth shut. I guess I have always been opinionated, at least for as long as I can remember. I mean well. I am naturally a problem solver. I was never good at just listening or as it is now called, “holding someone’s space.” I learned that phrase on some spiritual blog or was it on a funny YouTube video? Anyway, in case you never heard of it — it means to just be with others without judgment.

That’s easier said than done for me, especially when the person I’m with is venting about something I can give advice about… which usually is “stop doing that.” That isn’t usually what one wants to hear. Its hard for me though. Keeping my mouth shut. I learned some serious life lessons along my 58 year old journey and I am just trying to spare someone else the grief I went through. Learn from my mistakes.

I recently read a post on a blog I follow. The author is a Zen practitioner. He usually writes thoughtful posts and they seem to speak to me directly sometimes. I’m guessing the Universe makes sure I read them at the time I really need to read them. When the student is ready, the teacher will come.

This particular post dealt with allowing someone to experience their own life journey — without interference…like keeping my mouth shut. Holding their space and allowing them to figure things out for themselves — or not. How can someone experience their life lessons if someone keeps telling them what to do?

And that’s where its so hard for me. I guess I could learn to ask them if they want my advice. Or is that just another way of putting my  two cents in? I know I don’t like people coming across as preaching to me. You know those people — they always know better than anyone else when it comes to just about anything. Maybe that’s me. I don’t want to be one of those people, but I DO often have the answer to their problem.

I read in a few other spiritual sites that we attract situations and people who are reflections of ourselves. Is the person complaining only a mirror image of myself? I will have to meditate more about that. Meanwhile, I want to practice the art of keeping my mouth shut, at least until the other person asks for my opinion.

We’ll see how long that lasts…

Sat Nam!

Inge