Sunday, October 27, 2013

Refractory: stubbornly disobedient

Refractory defined as:

hard or impossible to manage; stubbornly disobedient: a refractory child.
resisting ordinary methods of treatment.
difficult to fuse, reduce, or work, as an ore or metal.
a material having the ability to retain its physical shape and chemical identity when subjected to high temperatures.

I have refractory sarcoidosis.  During the past three years I have tried many things to bend the stubbornly disobedient child called sarcoidosis to my will.  First thing I tried was simply my will in the form of denial.  The first two months after I was diagnosed I spent limping around and wheezing.  At the end of the two months I literally could not walk and getting out of chair would cause me to be out of breath.  Denial had failed, the disobedient child sarcoidosis had won the battle of wills.

Miracles, I believe in them.  I believe in big miracles like those in the bible, I am talking the old testament ones like the Red Sea being parted, burning bushes the whole nine yards.  I also believe in the small miracles that happen every day that push me along, the smile my wife has despite everything and lets not forget funeral potatoes.  There are miracles all around and I work hard to find one everyday.  To that end I have asked and I wait for a miracle.  Many have asked on my behalf as well.  I have had candles lit,  many voices have lifted many prayers to heaven to ask for a miracle on my behalf, and many have blessed me with power of their faith.  As of today I still wait for the Father to send me an answer. In His infinite wisdom, beauty and goodness he has chosen to leave the stubborn disobedient child sarcoidosis to run its course whatever that may be.  I have no doubt that everything happens for the greater good.

Last is the science of men.  I have always loved science.  For the majority of my life the scientific method served as my ten commandments.  I take that back, I am not sure if that metaphor works.  Maybe the universal constants were my ten commandments, I think I am digressing at this point but you get the idea.  Science has failed as well.  I have come to find out that science fails most rare diseases.  Sarcoidosis was first recognized over one hundred years ago and the cause is still unknown and there have been no drugs developed to treat it.  All the drugs I take are for other diseases that they have tried in the hope that they might work for sarcoidosis as well.  In my case all of the drugs currently used to try and treat sarcoidosis have failed.  Science has failed to find the secrets of the disobedient child sarcoidosis keeps, admittedly the full force of science has not been brought to bear.

As I sit here this Sunday night finishing this blog post it has been a rough week and I have learned what the word refractory means.  It means my body continues to be less and less my own.  The revolution continues and I just wish I knew what the demands of the refractory child sarcoidosis were.  If I knew maybe we could come to an accommodation.  In the end I still battle,the odds don't look good but I still battle.

Monday, October 21, 2013

New Doctor, Good Specialist

Over the last three years I have seen quite a few specialists.  Doctors that are the experts in their fields.  After seeing these specialist I rarely come away with anything useful.  More often than not I know more about sarcoidosis than these specialists.  There have also been occasions where doctors have quoted from twenty year old text books that are not accurate.  To recap I will go to a specialist and pay them a pretty good sum of money to be given wrong information.  If you think I sound bitter I would answer I think I am jaded not bitter, all right and a little bitter.

That being said I went to our local university hospital on Monday to see our local (state of Utah) interstitial lung disease specialist.  I was not holding my breath, literally or figuratively.  That being said the specialist took an hour going through two inches of my medical records plus imaging and when she finally came into the exam room it was breath of fresh air!  Let me make one thing clear I have never had any doctor go through my entire file before they have seen me.  Outside of the doctor that is responsible for the majority of that two inches I have only had one other doctor give a shit and get involved in my case.  I guess that is a total of three doctors that have given a shit, I am feeling lucky at the moment (no sarcasm).  I hope I have articulated how special it was for this doctor to take them time to give me care that is actually informed.

Now for the mixed news, otherwise known as reality.  She did not think there was any reason to treat the sarcoidosis aggressively, that at this point I had been on every group of drugs available and they had little effect on the course of the disease and the risk of these heavy duty drugs was not worth the small benefit I was receiving.  I know this sounds like bad news and I suppose it is but I had thought as much on my own for the past three months so even though it was bad news at least it was old news.  The good news was there are two drugs that could potentially increase the quality of my life.  Drug number one could help me stay awake and drug number two that may alleviate the pain from the extensive nerve damage caused by the sarcoidosis.

At this point I am excited to be awake.  I do not allow myself much hope and I try to take each day for what it has to offer.  That being said I hope I can start being awake, it does not seem much much of life if you are asleep.

Sunday, October 13, 2013

The Government Shutdown and the afterlife

I like to hear myself talk.  Everyone who has a blog likes the sound of their own voice.  I also like to think that I am helping people.  When I was first diagnosed with sarcoidosis there was a blog I found that kept me going for a good while.  There was practical information about how to handle the day to day but more than that it was personal and I felt like we had a shared experience.  The author of that blog died and when I found that out having a shared experience did not seem like a good thing.

Over the last couple of months I have slowly been posting more about conflict.  Conflict of all kinds, inner conflicts, childhood conflicts, adult conflicts and of course the conflict about the government shut down and the tone of the blog has shifted.  In my moments of self aggrandizing thoughts I think that the way I have handled being sick has been magnificent.  At one point I was accepting what life had for me and finding the joy in it no matter where it was.

I think I have lost the joy, at least to some extent.  Regardless of how my body physically declines there is still joy in this life and I have stopped looking.  When I take a step back to look at myself it is apparent that I am short sighted.  I had forgotten I am going to die.  In the end life is terminal.  I do not have time not to find the joy and truly none of us has the time to not find the joy.  I will try and keep a little distance from myself so that I have a clear view and I can be more far sighted.  From back here I scan the horizon of my life for joy especially at the intersections of the people I love. 

Monday, October 7, 2013

ACA (Well at least it is not about my mom right?)

There has been a lot of thoughtful discussion about the ACA (Affordable Care Act) and there has also been a lot of assholes talking to hear themselves talk. I do not have a lot to add other than two small points about me personally and a little bit about the whole thing so to speak.

I hear a lot talk from people that are opposed to the ACA that it is too expensive.  These cost discussions leave out one tiny detail.  If someone does not have health insurance there chances of dying increase dramatically and sometimes it can be the single most important factor in whether you live or die (breast cancer).  It comes down to how much is someones life worth? Over the long term costs are going up one way or the other and it is hard to say what the cost are going to be, how much will health care costs go down when people are diagnosed with illnesses sooner than they would have been because preventive care is now covered with no copay? It is hard to know and even if it is more expensive how many people die before it becomes "worth it"?

The lifting of the lifetime cap will literally save my life, I do not know how much my life is worth but in general I like being alive. Before ACA my insurance policy had a million dollar lifetime cap and my health care is over one hundred thousand dollars a year, it is easy to do the math in ten years I would no longer have coverage and then I would not be able to get another policy because of my preexisting condition and then I would die. Literally without health insurance I will die, and I will not die well (not as if things are going real well with health care but definitely better than without it.) I can continue to go on but on but I think it gets further aware from my point, it will literally save my life and I guess the question I would ask is what is one persons life worth? How much is my life worth? I do not know the answer but in truth money equals life.

Could the whole health care/insurance system become unsustainable?  I do not know but I think it is better to at least try and give people a greater quality of life and literally save many lives than not try to save lives because it is to expensive. 

PS I know I am an example of someone that some people would consider a reason the system has become unsustainable but I am sorry suicide is literally against my religion.  Is it time for somebody to just come and shoot me?  I hope not I like being alive and I know I have repeated that a few times but lets just say it is a theme I try and live by.