Letter of Courage #4: What I am learning about the ‘Health’ Care System

I have not wanted to write about the harder side of RSD or the experience I have been having in the health care system. I have wanted to be strong, to show everyone I can see the silver lining, to be brave like so many others who face even more daunting challenges than I. I have wanted to go on with my life, creating a new one with the current reality before me as just another part of the journey called life. I have done those things.

Yet, as the friends that encouraged me to write about my experience with RSD and the health care system have reminded me, not sharing the challenges eliminates the opportunity to connect with other people and hopefully, inspire a larger discussion about the health care system in general.

It’s always a fine line to walk, between remaining upbeat and hopeful about healing, and ignoring the experience lived in the present. I believe strongly in the philosophy of living in the present, and that, piling buried feelings about the illness on top of it all can only lead to more physical problems. So here it goes.

My family and I have faced a huge challenge since I was diagnosed in October with RSD. This experience has affected every aspect of our lives, from the financial – which was already tenuous as a new business owner bumping along the lead up to the financial crisis – to our housing, our relationships, and our overall life style.

Unlike many people, I was diagnosed with RSD immediately given the proximity of being stuck in the arm with a needle during a routine blood draw at a hospital and the extreme pain in my arm that developed right away. So, in this respect I have been lucky. Many people do not know for years that RSD is causing the extreme, over-the-top pain they are feeling and I feel deeply for what they are going through.

During that first appointment when I was immediately diagnosed, I was also fortunate that my doctor made crystal clear that RSD is not a psychosomatic illness as thought up until ten years ago. I had no idea how important that piece of information was at the time, but it became clear later when even health care professionals without updated RSD information would look at me like perhaps I was crazy.

I can’t tell you how painful it was to hear the former head of a major metropolitan hospital trauma center caution my friend against me, warning that I was instead having mental problems. It was his professional opinion that the diagnosis was a crock of s – – t.

What struck me at the time was – if he thought the diagnosis was bogus, why would he warn my friend about me? As if I had self-diagnosed rather than the professional medical diagnosis of a doctor from one of the top neurological centers in the country. Why had he not cautioned my friend about the doctor who made the diagnosis?

I wonder, how many other top medical professionals react the same way around the country?

Thankfully, my friend and I were able to talk together about the experience, and reflect on how many people have similar experiences, how many people receive flippant, prejudicial, uneducated advice from medical professionals unwilling to examine their own responsibility within the ‘health’ care system.

The trauma center doctor is just one more reminder of how unhealthy our health care system is now.

I have an appointment today with my doctor. I am supposed to get the results of the EMG test taken two weeks ago. The doctor who did the test said he found something that could be good news in the scheme of things. The electrical jolts through my nerves and needles stuck in my muscles revealed something in my neck region that may point to another cause than RSD for my diminished ability to walk, something that is treatable, curable. This is the news I want to hear. The RSD in the arms, that’s one thing, if I can regain my ability to walk like before, I will feel blessed.

The EMG results were encouraging, although he said he did not want to give me false hope. He wanted me to see the neurologist right away, but I already had her earliest appointment two weeks away since she only came into the public hospital once a month.

I emailed my doctor to share with her the test results, no answer. I wrote to ask how I should proceed given what the EMG said about making sure not to cause any strong jolts to my neck or whiplash, which naturally was concerning. The Health Plan said it would approve me returning to see my doctor back at the private hospital where I had originally seen her, so I wrote her an email, no answer. I wrote her again last week as my condition grew worse, and I felt a horrible headache for several days. No answer. It’s been that way for over three weeks, and really, even from the start.

The EMG I took two weeks ago was originally scheduled for me four months ago, when I was still being seen at the private hospital where my doctor works when she isn’t visiting the public hospital where I am now, where I was transferred because of my health insurance. The two times I was seen at the private hospital after being injured there, I was given immediate doctor and test appointments, with practically no one in the waiting rooms with a view of Golden Gate bridge, all of Golden Gate park and the ocean. If I had been allowed to stay there rather than transferred outside to the public hospital, we could have found this issue in my neck sooner, and maybe I’d be walking again already.

I am embarrassed to say that it’s taken me until now to fully understand what everyone else is saying between the lines to me. I am on the poor people’s health insurance, Medical, essentially, one step up from not having any insurance at all. I also hear clearly now, my position within the health care system is my own fault.

Since I am quite a smart individual, its doubly deserving since I chose to dedicate myself instead to art and film rather than the lawyer I could have been, the upstanding citizen to make my parents proud that I trashed to work independently in the media.

So, for the last four months, given the huge error in my health insurance judgment, I was sent out for all kinds of physical therapy, tests, and procedures, and even to a mental health professional for the stress, rather than the EMG test that could have staved off months of utter upheaval in our family life in all the ways I’ve mentioned. Each test and procedure and therapy keep pointing back to the need for the EMG.

These painful trips to the hospital for tests and therapies are reminders of what I did wrong. If only I had had private insurance and access to private health care, no one would have thought my time was expendable. As the time goes on, my income only slowly rebounds from zero over the months I could not move my arm, to barely surviving now that I can’t walk.

Everybody is making money off my illness while I am sent home to soldier on with the pain that no one seems to know anything about or even how to cure after over a 100 years. Why has it taken so long to find out anything? Numbers. With only 9 million people in the U.S. diagnosed with RSD, who could really make much money anyway on finding a cure?

In this health care system, I am a simple number, and not a very valuable one at that.

I’m told it’s my own fault because I didn’t have medical insurance. It’s the card that lets everyone out of feeling bad in seeing the change from a friend who walks to one who doesn’t. It’s the card that the doctors must scan as they dole out appointments. Its what people will say when many millions of Americans are gone from the disease called lack of health care to which no one can find a meaningful cure. How many will we lose? Will I be one?

I get it, I know, by the rules of this system, it’s my own fault. What can I say to that? Does it matter if I tell you how awful it feels?

I suppose not since millions of Americans have come before me, picked off one by one. No one talks about fault then, at that point in the chain of responsibility it becomes no one’s fault. Interesting how that works.

When I read about the special day designated now for chronic pain sufferers, I feel angry to see the sponsoring drug companies, and complicit regulatory agencies. All I see is a system created to push through diseased profit regardless of the cost to human consumers, smiling while leading us down the plank for which the drug companies and health care system are the ultimate rescuing white knights with a medication that might cure me before I die, or another test or procedure that can lead to more medications down the road we are supposed to travel together. I don’t bemoan the pain community, I know connecting with others experiencing the same thing is so valuable.

What can I say? I am in pain. My income shrinks to nothing, and their’s grows. My family falls apart and their’s grows stronger.

Well, perhaps this is the case, or just the emotions of someone who has experienced what I have, but thank god, my brain and heart still function.

This is what I didn’t want to share with you, this side of the experience, the part that is so terribly painful, and eye opening. To be one more person the health care system doesn’t care about because I don’t have money.

I am told to advocate for myself. I hate that word ‘advocate’ now, especially on those days I feel so bad its all I can do to make it through the day without crying like a baby.

I don’t have enough woman hours in the day to ‘advocate’ for myself as required by this mammoth system that can only be opened with the magic word. Cash. I don’t have.

After the tears dry, and I readjust my cap, keeping in mind the next generation and that the show must go on, I say, now what? Now what?

I am beginning to believe that the only hope for me is leaving this ‘health’ (income) care system in search of a larger answer. I want to walk out of this illness so I am going to look for what I can find to do so. I will share my results here.

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