I love and miss my dad (Part 1)

I was really angry when my dad died in March.  I am still angry but much less so.  I have a feeling that if you have been reading this blog you may have guessed that anger was my way to avoid my grief.  Now that I am less angry I find myself crying and really missing my dad for the first time since his death.  In fact I am sad enough now that I have to finish this later.

I am back and the break from writing has not made it any easier.  I do not know if I will live long enough to have enough time to heal these wounds.  I miss a lot of things about my dad.  He was funny and in a way that he did not need anyone besides himself to laugh.  He could fix anything and not in a Macgyver kind of way but in a way that the things he fixed outlasted him.  He was lovable even though he would sometimes think he was not deserving.  It sounds cliche but I am missing him more each day.

He never had any pets since I was born but he loved animals.  He loved horses, dogs, chickens, cats, and milk cows.  One time a cow died while giving birth.  Dad brought the calf home to our residential home in the Avenues of Salt Lake City.  The calf stayed in our backyard until it was healthy enough to be on its own.  The calf made it to our elementary school for show and tell.  I even rode the calf for a short time meaning I feel off quickly.

My dad loved to work hard.  A lot of my memories of my dad our him soaked in sweat and covered in dirt. He taught me how to work hard, it was a lesson that I did not appreciate until I was older.  My dad was a protector, I remember having sympathy for people that had come after me and incurred his wrath.  My father was a child of the depression and he was cheap, some people like to say he was frugal but they are wrong he was cheap.  Another lesson that he taught me that I did not appreciate until later.  That being said he was generous with his kids especially as he got older.

I think this will have to be part 1, it is easy to write but hard to remember. 

I was a Libertarian and then I got sick :(

I wrote this in response to a friends inquiry and thought it raised some salient points.  Also it is much easier to cut and paste than to actually write a new blog post.  Now I am wondering if I should make excuses why I am doing this or just leave it.  I have already done a fair bit of whining in previous posts so just read over those and insert some horrible things here as an excuse as to why I did not write a new blog post and just cut and pasted.  

I have insurance through my wife and I have private disability insurance I purchased through my employer before I got sick. A thought occurred to me, lets say my wife left me tomorrow, boom no health insurance, Second thought there is no mandate that makes my employer carry long term disability coverage and truth be told if it was not something I purchased through my employer I never have sought it out.  Two things that could easily be different and if they were different I would be dead.

The Libertarian thought would be that a private charity should help me with my medical bills. My medical bills run about $14,000 dollars a month, full disclosure that does include drugs which I consider a medical bill, I do not know of any charities that could pay my medical bills for very long and if they could they would probably would not.  They would direct there money where it could help the most people. You can help a lot of people with $14,000 dollars a month. 

People have used the example of private fund raising events for cancer treatments which can be expensive.  Sarcoidosis and other chronic illnesses are not like cancer.  With cancer there are usually some heavy duty up front costs and then you usually get better or die, one of the two, I will not be cured and I probably will not die for a while yet.

The conclusion I have come to is without my wife I would have to rely on the state,  It was a hard conclusion for a Libertarian to make.  On a side note it was also difficult for me to accept that I was wrong.  I still have a lot of the values of personal freedom that are espoused by Libertarianism.  That being said I think the next ideas I have are not very Libertarian.  I think the state should exist, and through the social compact that we all have made as members of a society I think there should be taxes and those should be used to create a safety net.  A safety net for health care and monetary needs.

Before I was sick it was easy to say that private charities should take care of the poor and people without health care.  The reality that my medical bills are a small fortune on a monthly basis and they could not reasonably be handled by any charity that I know of leads the Libertarian in me to ask should I be allowed to die? I am prejudiced on this topic because I like being alive so I had to change my a lot of my Libertarian beliefs.

I really think we should go farther than Obamacare and go with a single payer system which is quite Democratic but I also think Democrats believe in the nanny state and curtail many of our freedoms. I have a hard time voting now. 

SSDI

I have not talked a lot about Social Security Disability Insurance.  It is the insurance that every working American pays into just in case they become disabled.  It is not a welfare program like Social Security Insurance, it is a program I have paid into and now that I am disabled I would be getting my money.

Before I was sick I worked for 23 years and I spent most of that time at three jobs.  I like working, even when I do not like my job I like working.  I miss working.  If I take a step back I miss working more than anything else I can no longer do.  I have talked about it before and my opinion has not changed, a lot of my self definition revolved around work.

I have been out of work for a little over a year now and I do not think I have filled the hole in my self definition left by the absence of  work.  I have been floating and drifting around without the direction that work provided.  The sea of chronic illness is where I have been floating and drifting and that sea is rough.

There are a lot of tertiary things I miss about work.  The social interactions that take place at work were a lot more fun that I realized at the time.  The absence of these interactions made me realize how truly entertaining and rewarding they really were.  I do have one co worker that does make the trek to the sick room and of course there is Facebook, the in person visits are fantastic but Facebook is a poor substitute for in person interactions.

I have just realized that I have not actually talked about what being approved for SSDI means.  I think I am having a hard time coming to terms with the implications of what being approved means.  I have also just realized that I have not talked about what was to be the whole point of this post, I have been approved for SSDI.  Many people spend years trying to get disability and why they are waiting they end up losing their homes and not getting appropriate medical care.

I occasionally frequent an online support group funded by the Foundation for Sarcoidosis Research that is hosted by Inspire.  I communicate with people that have sarcoidosis from all around the world it does help me realize how lucky I am.  First I have access to some great medical care, it is a rare disease with little known about it but at least some of my doctors are willing to read about the new developments and treatments for sarcoidosis.  A lot of the people I talk to from other parts of the United States, I am in Utah, tell me horror stories about the ignorance of some doctors and because of that ignorance the horrible medical care they receive.  The lesson from these interactions is that I am lucky to receive, for the most part, quality medical care.

The second aspect of my luck so to speak is that I have been approved for SSDI in such a short time.  I was approved in a little over six months.  A lot of people I speak with online spend years trying to get approved.  A lot time the issue is they do not have health insurance so they can not afford to see a doctor to generate a paper trail that shows they are disabled.  I am fortunate to be covered under my wife's medical insurance and I guess I am fortunate that I have been so sick there has been a large paper trail to satisfy Social Security that I am disabled.

I objectively I know that I am fortunate or lucky or however you would like to look at it that I have been approved by SSDI so quickly.  The fact that I can not work feels more real today now that I have been approved and that does make me sad.

Holiday Season thank you disability insurance lady

Today is a special bonus post as we approach the holiday season and if you are gung ho it is the holiday season.  A lot of this post references events that were described in my last post so if you have not read my last post please do My last post.  Normally I do not have any callbacks but hey it is a bonus post you gets what you gets.

I finally received the official request from the insurance lady.  She wants all medical records from all my doctors for all of 2013.  This is despite the fact she has everything but two months worth of records.  Now you might be thinking why don't you just send her the two months of records?  If I do not give her what she asks for she can claim I have not responded to her request and cancel my claim because I am uncooperative. Also I only have fifteen days in which to get her a years worth of records.  

Now wait sports fans now it gets good.  She also wants my doctor to fill out an hours worth of paperwork and I am not exaggerating, it took him an hour to fill it out.  The insurance lady did not mention she would need this paperwork.  Oh and a note about this paperwork is my doctor had just filled it all out the end of September.  My doctor indicated on the forms he filled out in September that he did not anticipate my condition changing.  He used those words I love, chronic and refractory.  Now instead of using my time with my doctor for my care we are filling out forms for the insurance company.  I may be wrong but I bet she was hoping I could not get that paperwork filled out by my doctor in the fifteen day window.  It just so happened I had appointment with my doctor yesterday.  The scary part about this is my doctor often goes to Japan and at a different time I would not have been able to get these forms filled out.  I think this might be her intent in making my doctor fill out these forms every two months is the hope that I will not be able to have them filled out and she can again cancel the policy because I refuse to provide requested forms.  To put it in perspective normally for someone who is chronically ill like I am insurance companies request these doctor forms every six months or even once a year.  Now why does my doctor have to fill it out every two months?  Well you all know what I think.

In closing I now have no doubt it was the right thing to do hiring the attorney.  I hope it will stop the game playing and just let me focus on my health and allow my doctor to focus on my health as well.

In my opinion the disability insurance lady might be evil

Today's blog post is short and is just about what the title says. First I will just lay out the facts and let you the reader decide.  This was a few months back just to set the scene.  The disability insurance lady calls just to tell me that the medical records I have provided up to the point do not support my disability claim.  I get my medical records and read them and they indicate that I am really sick.  My doctor is also the head of critical care at the hospital that I see him at and he can be quite brief in his notes and usually only indicates things that have changed since the last visit.

The next visit with my doctor I ask him if he could be specific and list everything that is going wrong with me regardless of whether it has changed or not.  My doctor is a nice man and agrees.  I talk to the disability insurance lady and she is so friendly and says she is excited that those notes sound perfect and of course she is on my side and this will all be taken care of.

She calls me a week later and tells me she just got off the phone with medical records and she is waiting for the fax back and those doctors notes should take care of everything.  Fast forward to this Friday she calls and tells me that I have not provided any medical records and she is sending me a fifteen day notice and if I do not get all my records to her before the end of this fifteen day period my policy will be canceled.

Called my doctors medical records and it turns out that she had never called and requested those doctors notes.  Now this is just my opinion but I think she intentionally led me to believe that everything was fine i.e. that she was just waiting for the fax back so that she could then wait a few months and send me this fifteen day notice with the hope that I would not be able to get my medical records back to her in time.

At this point I have hired an attorney and sent her notice that all communication and correspondence should go through my attorney.  I am also hurriedly gathering up my medical records and sending them to her.  It is stressful and I am hopeful that now I have an attorney and everything she does is going is to be submitted in writing that the games will stop.  I am hopeful.

Kellogg's Raisin Bran vs Post Raisin Bran or the sans sugar house

When I was a kid we never had what would be characterized as sugary cereal.  I wont bore you with a long tale of sadness from my childhood so long story short we did not have sugar in our house.  We did not have sugar to put on cereal, no cookies, no pies, no donuts, I think you get the idea that our house was sans sugar or in essence the sans sugar house.  

Our breakfast staple was Cheerios and I like Cheerios to this day.  We did not have sugar to put on the Cheerios just Cheerios and two percent milk.  Occasionally my mother would buy Post Raisin Bran as a treat and I did consider it a treat.

Then on the rarest of occasions and the holiest of days when God would smile down upon me and my mom would make an error.  My mom did not make many errors, no hyperbole she is a genius.  Mom would buy Kellogg's Raisin Bran instead of Post Raisin Bran.  I know most of you had already guessed that from the title of the post.  There is a reason why this is important.

The main difference between the two Raisin Brans is sugar.  The flakes have differences but speaking from the mind of a child the only difference is the raisins.  Kellogg's has sugar on their raisins and Post's raisins were plain.  The Kellogg's raisins were hard and from the mind of an adult not nearly as good as the plump soft raisins from Post but Kellogg's had sugar.

In the end what I am saying here?  Sometimes what you don't have and what you long for is not really better than what you have, you just think it is.  Hard raisin with sugar coating not better than sweet, moist and plump raisin that you have at home all the time but on the other hand maybe the moral is do not deprive yourself of experiences or you will not know how good the raisins are in your house or maybe I do not know anything.

Refractory: stubbornly disobedient

Refractory defined as:

adjective

1.

hard or impossible to manage; stubbornly disobedient: a refractory child.

2.

resisting ordinary methods of treatment.

3.

difficult to fuse, reduce, or work, as an ore or metal.

noun

4.

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.