Monday, December 9, 2013

An Old Friend and My Lost Smarts

Have no fear I will continue the I miss and love my dad series but today I do need to take a detour.  I had friends growing up.  There were a group of us that hung out and were mischievous together during the junior high and high school years and there were a couple that I became close with.  This is the story of one of those friendships over the past twenty eight years.  Don't worry it will be fairly short, we did not see each other for twenty years.

I will give you a brief overview of the first six years of our friendship and then you can feel in the details that would suit your narrative of a good friendship going through those years.  Both of us were being raised by our mothers and I am probably being generous when I use the term raise, it might be more accurate to say we were both in the legal custody of our mothers.  We spent a great deal of time together and never seemed to run out of things to say.  We had all the usual things in common that you would think friendships are based on, we liked the same music, the same books, the same games and so on.  What really made us close was bonding over our dysfunctional families and the trust that we were able to build with each other when we could not even trust our mothers to be mothers.  I told you it would be brief, I am a master of condensing.

We both managed to make it to the age of eighteen without a drug habit or a criminal record which was more than most of our other friends could say.  Neither of us had been religious during our friendship but upon the age of eighteen my friend found religion.  His family were all Latter Day Saints or what is more commonly referred to as Mormons.  This did make me uncomfortable, it would be another fifteen years or so before I found a faith of my own.  I started to see him less and less.  Part of the reason was we were becoming adults and growing apart but him being religious played a part as well.

When I finally stopped hanging out with him on any regular basis was when he got into multilevel marking.  If you do not know what that is Google it and when they talk about the fringe aspects of it that was what he was into.  He wanted we to participate in some of the investment opportunities afforded by multilevel marketing and I was not interested.  When I finally lost touch with him completely was when he went on a mission for the Mormon church.  For those of you that do not know in the Mormon faith if you are a devote young man and feel the calling at the age of nineteen you will go on a two year mission to bring the Mormon faith to people all over the world.  I can not recall exactly where he went but it was somewhere in Central or South America and I know they spoke Spanish there because he had to learn Spanish.

We both live in same town still to this day.  I moved away and then came back, outside of his mission he has always lived here.  At any rate we have bumped into each other over the past twenty years and at each of these points I see a small slice of his life.  The first slice was a year or so after he returned home from his mission.  He had converted a young girl while on his mission and had married her after his mission was over and brought her back to the US.  I remember she was attractive but painfully shy and spoke almost no English.  The next slice was years later and at this point he was studying Hebrew and the Middle East at the local University and had two or three kids, still religious at this point.  A few years later he was still studying at the University and had a job as a parking enforcement officer on campus, he also had more kids and was still religious.  A few more years later he is graduated from the university has five kids, at least one of them is autistic and I think I remember that two were autistic and at this point he is still religious and working for the university in their IT department.

Full disclosure the sarcoidosis and drugs I take for the sarcoidosis are robbing me of my memory, mainly my short term memory (almost completely gone) and to a lesser extent my long term memory so all of the above is to the best of my recollection which is definitely not the best.

Now we are up to date.  He friends me on Facebook.  He is using a rather silly pseudonym but fortunately or unfortunately as I will find out later I look at the picture I recognize my old friend.  Now at this point he sends me a long rambling message about how he is no longer Mormon and that he likes beer and smokes a pipe and his marriage is on the rocks.  May I say from my perspective you may lose touch with friends but you don't stop caring about them.  Now the part of the message about beer and smoking a pipe seem to me like he is proud he has earned a merit badge.  It seemed odd but hey he has just spent the last twenty years being religious and now he is not and it might seem that drinking beer and smoking a pipe are like earning merit badges.

I see him using Facebook over the next month or so and I have come to the conclusion that he does not know what when he comments or likes items that it shows up in his friends news feeds or he is not embarrassed by some pretty racy comments on some fetish pages.  At this point I am starting to be a little uncomfortable.  If a Facebook group posts a picture of scantily clad girls dressed in vinyl or leather or something I do not want to know that he thinks they are both naughty and deserve a spanking.  I do not mind that he thinks that they deserve a spanking I just do not want to know about it.

Now I would say about a month later a friend of his on Facebook friends me and I am like sure whatever why not.  Well I will tell you why not, she has a lot of time on her hands or is lonely or both.  Either way in my weakened state I am not capable of catering and placating a stranger about their neurosis and oddly enough technical support questions.  At this point as a courtesy I ask if I unfriend her will this cause him any issues?  I also ask about his marriage, the status of his living situation, and the kids.  At this point he gives me another long rambling reply telling me that I do not need to ask his permission and why does everyone need to ask his opinion, he also starts going into some Libertarian basics.  I explain I am also a Libertarian and that I was not asking for his permission but asking if there are going to be issues for him because as a Libertarian I am allowed to care about how my actions will effect my friends.  I was nice and joked about and then went on to ask about his wife and the kids.

Then it started, he proceeded to write me an essay about how I did not know what I was talking about Libertarian philosophy and he did not know what audience I was playing for or why I was using such stupid methods to try and manipulate him.  I did engage about, I never got angry but I do love to argue.  I responded I did know about Libertarian philosophy and I was not playing to an audience and I was not trying to manipulate him and I did not ask him for permission.  The exchanges literally go on for days and his response become more and more paranoid and less and less based in reality.  I feel guilty saying that but it is true.  The sarcoidosis has robbed me of not only my memory but a lot of the abilities that make about what people would call intelligence have been effected.  I will admit it I am significantly less intelligent than before I got sick.  I still have enough left over smarts that I can fake it most days but truthfully I know I am faking it and I have lost a lot of my smarts.

I still trust this friend despite the lack of contact and I confide in him that I have lost a great deal of my smarts and I really do not understand what he is talking about.  He keeps bringing up what audience am I playing for and why am I using such stupid methods to try and manipulate him and he wants to know what is really bothering me.  I finally have a friend look at the whole exchange to see if I am missing something and sadly the second opinion comes back that I am not missing anything and that his response are of such a nature that she hopes he gets counseling soon.

I did not mention this earlier but to end this post today you should know that one of his uncles is in the state mental hospital and in my opinion one of his brothers and his mother should both have intensive psychiatric care and they should have been or for all I know are in inpatient mental care facilities.  At the end his messages became more aggressive, threatening and paranoid and I sent him a final message asking him to get some help and to not contact me in anyway.  Why did I relay this whole story today?  With the sarcoidosis effecting my brain am I more worried about pain and dying or losing my mind completely in one way or another and needing to be inpatient at a psychiatric care facility?  I do not have the answer but today I am little more scared of losing my mind than pain and dying.

Monday, December 2, 2013

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. 

Monday, November 25, 2013

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. 

Tuesday, November 19, 2013


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.

Wednesday, November 13, 2013

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.

Monday, November 11, 2013

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.

Monday, November 4, 2013

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.

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.

Monday, September 30, 2013

My mom has no teeth (part 2)

Once I opened the mom can of worms it looks like it is staying open for at least one more post.  Why I am so angry that mom is sick and toothless?  Well after a week spent in self examination it has become quite clear.  She is sick and she does not have to be.  I have spent the last three years doing everything I can to restore some semblance of health to this body and my mother could spend fifteen minutes with a doctor and she could be restored to a reasonably healthy existence.

She needs to treated for type 2 diabetes and congestive heart failure.  Although congestive heart failure sounds scary a little loop diuretic would get her up and moving.  She has two well known and easily treated diseases but she chooses to stay at home and suffer until she dies. I stay at home and suffer, we have that in common, but I have little choice in the matter.

I think in general, if I may toot my own horn, I am a pretty Zen.  I am talented at accepting what life has given me and make the best of a situation. I try and enjoy the only life I have to live and I do not begrudge other people their health or happiness.  For the last couple of weeks I have had a real hard time keeping my Zen, especially in regards to the not begrudging other people their health and happiness.  I am not angry at people that are healthy and happy, I am really f***ing pissed off at people that could be healthy and choose to wallow in their illness.

I know there must be something complicated that goes on in my mothers psyche.  I am sure she is not sitting down and saying to herself I am going to wallow in my illness and suffer needlessly but from the outside looking in it is hard for me to see anything else.  If I take a step back I know there must be some deep rooted fear of the medical profession, especially dentists obviously and I can relate.  At one point in my life I was afraid of dentists and doctors and I know it was irrational but when push came to shove and it was see a doctor and do what he says or die, I decided to see a doctor and do what he says. 

Even though I am doing what doctors say at this point it looks as though I will be leaving the stage of life prematurely.  I am adding this for all the asshats that are going to chime in that we all have to die, well I am aware of that but we all do not have to die living statistically only half of a normal life.  Now next week I am sure I will have recovered my Zen and the posts will again be inspiring about my struggle and I do appreciate your patience while I indulged a little of the darkness that is around.   

Monday, September 23, 2013

My mom has no teeth (part 1)

My mom is old and she is sick and as the title suggests she has no teeth (well at least not many).  I don't talk about my mom much or for that matter my family.  There was of course the exception of my dad dying and that did rate a few blog posts.  Now for the rest of my family that is still alive we are not a particularly close but that does not mean we do not care about one another.  Now lets to get on the path to try and explain the toothless smile.

When I was growing up my mother cared about her appearance and she cared about appearances.  She had clothes, jewelry and the all accessories to match.  We did not necessarily have to food to eat and by we I mean my sisters and myself but my mother always looked good.  My mother has traveled a road that is unknown to me.  It has carried her form the professional who always looked the part to my mother that could now be an extra in Deliverance the movie.  I said we were never close and I am fascinated with trying to understand how she ended up where she is now.  Now where is she exactly?

My mother now lives in a small town that is inhabited by many meth labs and the population is mostly made up of the kind of white trash that run and frequent meth labs.  Some how over time her appearance has come to match her surroundings.  My mother is in her late sixties and wears nondescript clothing that looks like it came from a Goodwill in a bad neighborhood.  Her hair has thinned and her skin looks like that of a woman twenty years her senior.  Of course last but not least in order to complete the picture her teeth are few and far between.   

My mother can not get out a chair now without assistance and sometimes it becomes near to impossible to get her out of a chair even with assistance.  She refuses to use a walker and begrudgingly uses a cane.  She does that old person shuffle and can not navigate stairs.  She recoils when anyone touches her, I have a theory on this.  I believe she has untreated diabetes that has caused nerve damage in her arms and legs that causes her the pain when she is touched.  Her eyes are dry and hurt her so much that she has been using some kind of veterinary ointment that looks like Neosporin.

Her diet consists of warm Doctor Pepper because what is left of her teeth can not stand the cold.  It is not diet Doctor Pepper to make sure that she gets enough sugar to keep the diabetes going.  The rest of her diet consists of fast food of various varieties and of course meals on wheels.  She tells me she does not need assisted living because if she fell and was unable to reach her cell phone (which has happened) the meals on wheels people would find her.  I think at this point I have painted the picture of her current state of being and to what end?

Despite my childhood of neglect and unhappiness she is my mother and for reasons that are complex and probably for the most part unknown to me (denial) I care about her and want her to be as well as possible.  To this end the traditional roles have been reversed and I call her on the phone (I live in a different state) and try and get her to take care of herself.  Mom have you gone to dentist?  Her response is there is nothing he can do because I have an autoimmune disease that is causing my teeth to fall out.  Now at this point I am fairly confident that the doctor that has diagnosed her autoimmune disease is Doctor Pepper.

Autoimmune diseases can cause a lot of damage to teeth.  Here is how it actually happens, the autoimmune disease causes dry mouth which allows plaque to grow crazy and cause more tooth damage.  The treatment, drink water to keep your mouth moist and go to the dentist more often.  Now of course my mother is lying about going to the dentist and of course she also lies about going to the doctor but you can take a horse to water but not to the doctor?

Monday, September 16, 2013

Stress probably not helping much

My friend from my disability insurance company has called again with a series of veiled threats and insinuations.  I have broken down and contacted a few lawyers and probably will end up employing one to deal with the insurance company.  I feel weak and beaten down.  I think of myself generally speaking as strong take care of business kind of fellow.  In fact some people have even referred to me as an asshole and hard to deal with.  Three years into being seriously ill I do not have the mental strength to deal with much of anything.

I am trying to think about it in terms that I will be helping the economic recovery but that is not really making me feel better.  Infirmity of the mind and spirit seem to follow infirmity of the body.  I would not say I am feeling sorry for myself but pretty damn close and what keeps from the dark deep well of self pity?  My wife and her care and comfort shine a light that keeps the darkness away.  It is cliche and honestly sounds trite to me and I am the one writing it but there is truth there that if you have traveled the slow sick painful road to death with somebody that walks it with you gladly you know what I am talking about.

Tuesday, September 10, 2013

Update from todays Doctors Visit

I usually don't do a midweek update but today you get a bonus blog update.  I had an appointment with my pulmonologist who also happens to be in charge of the critical care department at the hospital I go to.  We had to waste a lot of time with forms for my disability insurance but once that was all settled we focused on current condition and the plan going forward.

My current condition is still considered refractory and regressing.  That is the medical lingo for I am getting worse and all the treatments we try are not working.  My doctor feels we are doing everything that can be done but would like me to see a friend of his at the local University Hospital.  I feel really lucky to have a doctor that takes the time to discuss my case with his friends that are also pulmonologists.

She does research in interstitial lung diseases and while she does not specialize in studying sarcoidosis, sarcoidosis is an interstitial lung disease and she does have a lot of experience with it.  She is not sure she can offer anything new but would be happy to consult on my case since my doctor has requested it.  Of course I wish I did not have to consider this but unfortunately my insurance company will not pay for me to go to the university hospital so all the care she could offer would have to be paid for out of pocket.

I am happy to put out cash for anyone that can help me but it is a real shame that I might run into a situation that I could not afford care that would help me.  To wrap it up, I am getting sicker and none of the drugs that are available are having much of an impact.  I do have a doctor that care enough to go the extra mile to try and help me, also fill out a bunch of crappy paperwork for the not so nice insurance company.

Monday, September 9, 2013

Disability Insurance (Evil? Afraid!)

When I was able to work I had signed up for a long term disability insurance through my work.  It has not been easy working with them.  It took a long time to get approved because they kept "losing" my medical records and that is the first incident in a relationship that I would characterize as difficult.

On Thursday of last week they called to tell me that my disability claim was no longer supported by my doctor and that he said in his office notes that I was doing quite well and they were no longer going to be able to pay my claim.  I was crushed.  I had thought that my doctor had understood how sick I was and now come to find out that he thought I was doing quite well, it took my breath away.

I felt lost and alone.  That nobody supported me.  My wife and I are in a financial place where we do not need the money from disability insurance but it allows us to be a little comfortable.  In fact things would be uncomfortable if the disability money were to stop.  Money aside the part that caused me the most stress was my doctor thought I was doing "quite well".

I had my wife go get all the doctors office notes from this year so I could  read for myself what he had been saying.  That is when I began to question whether my disability insurance company is evil or not.  Below I will quote some from the doctors office notes and to preface so I do not have to post all of the notes he is talking about remicade infusions.

Doctor "After the 2nd treatment he felt quite well with improvement in pain level and of skin lesions."

Disability insurance lady did not include the sentence that followed.

Doctor "The effects did not last till the 3rd treatment."

That is the only time my doctor has used the words quite well and only in reference to a short span in which the remicade did have a positive affect.  I am trying to find a reason why the disability folks would just quote that one sentence out of context other than they were trying to manipulate me so they would not have to pay my claim anymore but I can not think of one.  Can you?


So I called the disability insurance folks today and after I pointed out that the doctors notes did not in fact say I am doing well they told me it was all a big misunderstanding.  Makes you wonder, do I seem like I am easily confused?

Monday, September 2, 2013

Labor Day

On this Labor Day I can't helping thinking that I took being able to work for granted.  I hope I don't do a lot of woe as me posts but I am afraid this may be one.  I started work when I was fourteen and worked until I was thirty nine.  That is twenty five years of gainful employment.  Come September I will have been disabled and unable to work for one year.

I never realized how important working was for me.  I had my complaints just like everyone else.  I worked harder, was not appreciated, was not paid enough, should have more responsibility, should have less responsibility, and etc.  Then poof those complaints are gone and replaced with new complaints that make the old ones seem much more appealing.  New complaints, I can not walk, can not breathe, can not wipe my own ass, and etc.

Now on the other hand I supposed everyone dreams about not having to work and I am no exception but I think I imagined being healthy and a lottery winner not dieing and living on disability insurance.  It is so hard to get up every morning and not be able to go to work.  It is not just that I am not working it is that I am unable to go to work.  I have actually had people say they are envious of all the time I now have.  The pain that drove me from my job still fills my day.

I wont bore you with a repeat description of the pain but it has become my constant companion.  The moral of all of this rambling is that pain will make you miss even the most annoying of coworkers and be sure to enjoy the now because tomorrow is not guaranteed.

Monday, August 26, 2013

Pain Pills (Part 2 Fear)

Now here is the real fear.  The pain makes life unbearable and the drugs, well they don't make you feel good but they make life tolerable.  My current doctor who has followed me for three years understands and would not take away my pain pills.  What if he dies, what if he moves, what if he moves facilities and is no longer on my insurance?  That means a new doctor...

I am fat, I think that is the simplest and most descriptive word.  Sometimes when I see a new doctor sometimes all they see is that I am fat.  Real life example I went to see a rhuematologist and he kept telling me my nerve damaged was caused by my diabetes.  Only problem with that is I do not have diabetes.  I told him I don't have diabetes and he continued on about how I need to see an endocrinologist.  I told him I have an endocrinologist and that if he would look at the notes he would see I don't have diabetes.  I also invited him to call my neurologist and he could explain to him how sarcoidosis was the cause of my nerve damage.  This was like me talking to a brick wall.  Apparently in the medical world if you are fat you are a liar.

That is what I am afraid of, the fat factor.   I can't imagine what it would be like without pain medication and I am afraid.  I am seeing a general practice doctor and I am hoping to build a relationship with them so they know everything that is going and I can be a little less afraid.

Pain Pills (Part 1)

When I first started this blog I made reference to the fact that my room has become my prison  As I become more ill it become more accurate.  My pain level has increased greatly and I have finally broken down and requested an increase of pain medication.  The doctor gave me a prescription without any reservation.

I have been reluctant to take pain pills, I have been reluctant to stop working, I have been reluctant to admit I am sick.  I do not like to be dependent on anything or probably anyone when I really think about it.  I spent two months writhing in pain before I finally broke down requested that increase.  My main sarcoidosis doctor have built a relationship over the last three years and I have been reluctant from the start too take any drugs of any kind for sarcoidosis.

When I was first diagnosed I refused treatment for three months until I literally could not walk and was out of breath just getting out of a chair.  When we would try a new drug that would that would take six months to start working I would stay on it for a year just to make sure it was not working.  This is just a small sampling but it gives you an idea of the relationship I have with my doctor, he tries to give me drugs and I refuse.  So when I finally ask for an increase in pain medication he is like oh my and gives to me.

Now I know this was not very interesting but I swear part 2 Pain Pills The Terror will be.

Wednesday, August 21, 2013

Leaving the dream

First things first, sorry about the delay in the post.  A little bit of stomach virus / food poisoning / who knows but it did keep me down for a couple of days.  Now for the post.

I was emailing back and forth with one of my sisters and she asked what I as doing, I of course responded that I was dying (I think it is funny).  She then in turn said I was leaving the dream.  I think this is of course auto correct changing living misspelled to leaving but even if that is the case it is a beautiful sentiment.

Is this life just a dream and when we die are we actually waking up?  Beyond the beautiful sentiment if this is a dream lately it has become boring.  My grandmother always used to say that if you were bored it was a sign that you have a boring mind.  At this point grandmother I am willing to concede I have a boring mind.

The days run together now.  There are two reasons the days run together.  Number one the brain does not function as well as used to, partly from the disease and partly from the drugs I take for the disease.  Number two the days are the same, there is little variation from day to day I can never tell what day it is.  The only difference that I can tell is whether I have a doctors appointment or not.

Maybe when this dream ends another begins.

Monday, August 12, 2013

We all have to die from something

I have not given a lot of the details of the treatments that we have tried or that we are trying at any given moment.  For the most part I think these details are boring and I know that it is selfish on my part to exclude these details from fellow sarcoidosis sufferers that read my blog and may be helped by this anecdotal information but hey we are all selfish sometimes about somethings.  In order to stream what follows out of my head a few details about my treatment are necessary.

There are no drugs approved by the FDA to treat sarcoidosis but there are five different groups of drugs that are commonly used.  Usually you start with one drug, if that does not work you switch to another drug and so on and so on.  Depending on your doctor you may go through each of these five categories in turn sometimes trying one drug from each category and sometimes trying different drugs from each category.

Now if that doesn't work they will usually try a duo of drugs, one from say category a and one from category b or maybe one category e and one from category a.  You get the idea but generally speaking they (they being the "doctors") do not like to give you more than two of these drugs at any given time.  The drugs used to treat sarcoidosis are pretty hard on the human body.  Possible side effects are blindness, liver failure (death), heart failure (death), kidney failure (not death but not pleasant), cancer (maybe death maybe not) and erectile dysfunction (definitely not a good side effect).  Those are some of the highlights of the possible severe side effects and I have not even mentioned any of the host of lesser side effects.  When you mix two of any of these drugs there are a whole new list of side effects and quite a few of those are potentially fatal.

Yawn, I am pretty bored and I imagine everyone reading this is too, but now the background is complete we can get to the good stuff.  Over the past three years I have taken at least one drug from all five of the categories and during this time my condition has continued to decline.  Now lets skip ahead to a month ago.  For people that want to use Doctor Google I will list the four drugs I was taking to treat my sarcoidosis (I wont give you the list of the sixteen other drugs I take for symptom relief and to counteract side effects of the first four drugs I was taking).  Those drugs were prednisone, leflunomide, methotrexate, and remicade.

Now after two months of taking this mix I did start to experience improvement.  Unfortunately that only lasted two weeks and then the decline began again.  This has been the pattern for me.  We try a new drug or a new combination of drugs and I see some improvement for a couple of weeks, a couple of months or a sometimes even a few months but eventually decline begins again.  We, the doctors and I, have been aggressive in our treatment of my chronic and refractory sarcoidosis and at this point to little effect, hence the refractory part.

Taking all these drugs together for little or no effect is not a tenable path forward. What does that mean?  That means that the focus going forward is no longer finding away to treat the sarcoidosis but to make me feel as good as possible.  Now I probably would have used the wording making me as comfortable as possible but the implications of that terminology probably strikes a little to close to home.  We are not stopping the remicade, methotrexate, and prednisone and there has been cases were remicade has become more effective over time but in essence we are conceding that at some point barring a lightning strike I will die from sarcoidosis and that if I continue to decline at this steady rate that point will not be to far off.

So I did just write that at some point I will die from sarcoidosis.  Not the most pleasant of thoughts but if I am to be honest the thought has been in the back of my head for the past year.  I know this post has taken a dark turn of sorts but I wanted to let you know next week I will be my charming, witty, and entertaining self or I might be wallowing in self pity but definitely one of the two.  Last but not least don't cry for me Argentina.

Monday, August 5, 2013

Getting Your Affairs In Order (Part 2)

Telephone meeting with the lawyer was boring and upsetting at the same time.  There is a lot of tedium when it comes to planning your death and that is where the boring kicks in.  The upsetting part is probably not what you would think.  It did not make my death "real" because of all the planning, I have grown pretty comfortable with the idea of dying.  Now don't get me wrong I am not looking forward to my death and I am not excited by the prospect of being no more.  So what upset me?  The questions about living in horrible scenarios.

There are the questions you would expect, if you are brain dead do you want to pull the plug and other easy questions that I had considered before ever seeing the lawyer.  Then you move into when you want to be resuscitated or i.e. your DNR rules.  There are lots of things to consider but I will go ahead and skip to the upsetting things.  Would you choose to be resuscitated if you would live for many years in unbelievable pain?  Now I am oversimplifying this for sake of this intellectual exercise but that is pretty much the gist.

Once this possibility had been brought to my attention it did seem obvious but cut me some slack I am on a lot drugs that effect my brain and I am distracted with the whole trying to make the decisions about keeping me a alive and to have some kind of quality of life.  So would I want to be alive if it would involve a lot of suffering?  It turns out that after this was so initially upsetting the answer was apparent by my current actions and actually I feel kind of stupid.  If you follow my blog there was a post a few weeks back called have you ever put a gun in your mouth? and that post was about being in so much pain that it drove me to seriously consider suicide.  The fact that I am writing this and I did not shoot myself indicates that I would want to live even with suffering that had no hope of end other than death.

That is the boat I am already traveling in.  Could it get worse?  Sure things can always get worse and I am grateful that they are not worse.  I am grateful I have a wife that has stayed with me and given me excellent care.  I would be dead right now if it were not for my wife.  There are two reasons for that, one her care has been the difference on several occasions between me living and dying, two I would not have the will to live if it were not for her and I would have given up long ago.

I look back over this post and it is getting kind of convoluted, not my best work.  I think I am still convoluted in my head about this topic and maybe thats why it comes out convoluted.  Alas stay tuned and maybe before I die this will all work itself out.

Monday, July 29, 2013

Getting Your Affairs In Order (Part 1)

If you follow my blog you know my dad died back in March and that combined with my declining health has finally motivated me to "Get My Affairs In Order".  Just for the record the quotation marks used in the previous sentence are of the air variety.  There are things that I thought would be hard that have been easy and there are things I had not thought about which are not necessarily hard but confusing to say the least.

The actual decisions about what I wanted done with my remains was quite easy.  My dad had been cremated and a big part of that decision was just practical in that he died quite a few states away from his home.  When it came to his final internment it was easy for my siblings and I to just divide up the ashes and kind of each do our own thing.  I think if we would have had him embalmed and kept intact it would have been much harder to divide him.  The convenience definitely appealed to me, for my dad I had a little pendant urn, a small urn for my desk, and a nice full size one for display.  Also I have a good amount that I will have interned with his mother.  One sister had part of him interned in a mausoleum at an Episcopal church in a town he was fond of, my other sister I believe will have some of his ashes interned at a family cemetery.  Cremation makes things easy.

I would like to be cremated in a pine coffin.  I always loved working with pine.  It is a soft wood and it will literally bend to your will.  Easy to sand and easy to finish.  Love the grain some of the best knots I have seen outside of walnut.  Also it will stain easily and take on almost any finish.  Last but not least who can forget the beautiful fresh smell. Now that is wood I can spend all of eternity with.  I have requested that my wife keep my ashes around until she passes away and then have them interned or scattered or frankly whatever as long as they are with her.  Boom goes the dynamite first one down.

Now for the actual service.  As I have mentioned in past posts I am a Christian but not of the proselyting variety.  Funerals are for the living and not the dead and as such I want my funeral held at the religiously neutral site of a funeral home.  I want all my friends regardless of their religion or lack their of to feel comfortable coming to my funeral.  If there is going to be any religious speaker of course I mandate that they would be Christian but I would be fine without any religious presence at my funeral.  Again funerals are for the living and since I will be dead I do not need a sermon or any kind of reassurance in my faith.  I think that my life and the demonstration of my faith through how I lived my life should hopefully serve as beacon to people that are open to having Christ in their lives.

Now do not worry I am still keeping the religion talk to a minimum and in part two of this post we will be discussing more practical legal stuff and of course the food to be served at my funeral.  Both very important topics.  See you all next week.

Monday, July 22, 2013

Remicade continued

I have finished my third infusion of remicade last Tuesday.  Besides a little pneumonia I have experienced improvement in all of my symptoms with one important caveat.  I have experienced an increase in joint and muscle pain.  I have run out of adjectives to try and describe pain and I will not bore you with anymore futile attempts.  That being said what the hell I am I going to say then?

Pain sucks, blah blah blah, pain changes your life, blah blah blah, nobody understands, blah blah blah, quality of life, blah blah blah.  All my posts are stream of consciousness but this one seems to be more stream and less consciousness.  I thought that if the remicade had shown any signs of not working I would freak out.  Remicade is after all the last treatment available and if it does not work that will be that.  Somehow I have gone from being ready to kill myself to some kind Zen place that somehow resembles apathy.

I am still scared of pain and I do not know if I have ever really been scared of death or not.  The fact that I am still scared of pain would lead me to think that I should be scared that the remicade is either causing severe pain or not preventing the disease from causing more pain but I am not.  I am not sure why I am not scared either.  This could simply be today and the massive amount of drugs in my system or maybe I have turned over a new leaf and found apathy?

Friday, July 19, 2013

Chronic Pain (Someone Else's Words)

I am not a big linker.  I think most people can search on the Internet for themselves.  I am not an aggregator after all.  That being said I read this and cried.  It was a moment of release to know that someone understands.  Also it is good advice if you know someone with chronic pain.  Read this!

Monday, July 15, 2013

Things can always change quickly for anyone, but I choose to ignore that.

I have gotten worse and it has been quicker than I thought possible or have ever experienced.  I am the sickest I have ever been with sarcoidosis.  Last week the pain had gotten extreme and I was unable to get enough oxygen even when I was just sitting in a chair.  Your oxygen saturation should at least 88% or you should be on supplemental oxygen.  When sitting mine was 84% and would go down to 71% on just a trip from my chair in the living room to the bathroom.  Having to have oxygen on 24/7 just to survive sucks, I will probably end up there at some point but I will admit it was alarming how quickly I went from being somewhat on the road to recovery and then unable to walk without great difficulty and unable to breath without assistance.  We have added back in my favorite drug prednisone in large doses.  The large doses of prednisone has helped with the pain and the breathing but unfortunately it has not been completely helpful.  I do not wish to alarm anyone or get up on my cross so to speak but unfortunately my condition seems to have become unstable and potentially able to quickly decline.

The point of all of this is twofold.  One I would like to keep my Internet family in the loop and two I may die more suddenly than even I thought possible.  If I do die suddenly I would like all my amigos out there with sarcoidosis to remember that 19 out of every 20 people with sarcoidosis will die from something else.  Just because I shuffle off this mortal coil, that's right I went there, does not mean that you should give up and more importantly you should get as much joy from each day and the people that are presented to you in that day as you can.   

Monday, July 8, 2013

I wish things were the way are on the TV show House

I wish things were like they were on the TV show House, you get diagnosed with a rare disease and of course that may take a while but once diagnosed they give you a cocktail of drugs and you are noticeable better within forty eight hours.  Actually having a rare disease is nothing like that, except the part where it takes forever to figure out what you have.  I have tried many different drugs for this disease, some of them you need to take for six months before you can tell whether they were working or not.  The drugs are of course dangerous and I guess that is reflected on TV, they always say there is a chance that the treatment could kill you.  The way the treatments could kill you is a lot more vague than sudden death.  Below is just the warning on the interaction of two drugs I am taking it is not even their individual potential for killing.  The best part is that the current recommendation is that you should take both of these drugs at the same time if you have sarcoidosis.  Crazy.

 Major Drug Interaction

methotrexate interacts with the infliximab in Remicade (infliximab)

MONITOR CLOSELY: The use of tumor necrosis factor (TNF) blockers with other immunosuppressive or myelosuppressive agents may increase the risk of infections. Serious infections and sepsis, including fatalities, have been reported with the use of TNF blockers, particularly in patients on concomitant immunosuppressive therapy. Agents that may be significantly myelo- or immunosuppressive include antineoplastic agents, radiation, zidovudine, linezolid, some antirheumatic agents, high dosages of corticosteroids or adrenocorticotropic agents (greater than 10 mg/day to 1 mg/kg/day, whichever is less, of prednisone or equivalent for more than 2 weeks), and long-term topical or inhaled corticosteroids. Concomitant use of TNF blockers with other immunosuppressants such as azathioprine or mercaptopurine may also increase the risk of a rare and often fatal cancer of white blood cells known as hepatosplenic T-Cell lymphoma (HSTCL), which has primarily been reported in adolescents and young adults receiving treatment for Crohn's disease or ulcerative colitis. Cases of HSTCL have also occurred during use of these agents alone. Because individuals with rheumatoid arthritis, Crohn's disease, ankylosing spondylitis, psoriatic arthritis, or plaque psoriasis may be more likely to develop lymphoma than the general population, it is difficult to assess the added risk of TNF blockers, azathioprine, and/or mercaptopurine.

MANAGEMENT: Patients receiving a TNF blocker alone or with other immunosuppressive or myelosuppressive agents should be monitored closely for the development of infections. TNF blocker therapy should be discontinued if a serious infection or sepsis occurs. Close monitoring for signs and symptoms of HSTCL (e.g., splenomegaly, hepatomegaly, abdominal pain, persistent fever, night sweats, weight loss) is also recommended during use of TNF blockers, particularly in combination with other immunosuppressants such as azathioprine and mercaptopurine.

Sunday, June 30, 2013

Have you ever put a gun in your mouth?

Yes, I have put a gun in my mouth.  I write this blog for two reasons, one for my own catharsis and two with the hope of helping someone.  If I am writing this too help people by sharing my experience I should probably share the parts that make me uncomfortable as well.

The month before I started Remicade was bad.  To put things in perspective I was on the receiving end of pedestrian/auto accident when I was fourteen.  I had several injuries but the worst was my leg.  My foot had become disconnected from my leg, at least in the sense of my skeleton.  It was attached but not in a natural looking fashion.  My tibia had also split length wise, three inches from the ankle.  At that time it was the most physically painful thing I had ever experienced.

Flashback to when I was first sick.  What finally drove me to the doctor to finally be diagnosed with sarcoidosis was pain.  I was leaving a dinner with my father and it felt like someone had ran a railroad spike through my back to the point where it was almost coming out the right side of my chest.  If getting hit by a car was a ten on the pain scale this was an eight.  I went around with that pain for two weeks.  It had not lessened and I finally broke down and went to the doctor.  I won’t bore everyone with details but if you have any questions or you would like me to expand on something for a future blog post let me know.  My email is and my twitter handle is @frasputin.

One final flash back to about a year after my diagnosis and I knelt down to lift a chair up to put a rug underneath it.  My knees felt like someone had stabbed large carving knives into my knees and then had grabbed a ball peen hammer and was beating around the knives that had been stabbed into my knees.  With the car accident still being rated as a ten on the pain scale, this was a twelve.  I became nauseated and for lack of a better word swooned.  The happy ending to this story is the pain eased up in about five minutes; now in what I call pain time, that seemed like a lifetime.  

Now we come back around to the month before I started Remicade and it was bad.  My hips, knees, and ankles have been the most effected by sarcoidosis.  For the entire month the lowest my pain level was an eight.  There were hours at a time when the pain level would be a twelve.  I would writhe in pain, I would cry out, and sometimes I would weep.  I took pain pills and found no relief, I took twice as many pain pills as I was prescribed and found no relief.

Now I am about to talk about religion and faith.  Do not let that scare you off.  I came to Christianity late in life and I must say with great reluctance.  I do not speak of my faith often and I never try and convert anyone.  I could not be converted by anyone when I was an agnostic. I had searched and read a great deal.  I had always believed God would not give us the ability to reason and then ask us to suspend it.  Most people I spoke with had no real understanding of their own faith, and to be honest I thought them fools and dismissed them.  In the end I had a Saul on the road to Damascus experience, since I did not share my experience with anyone and it has no earthly reference I do not speak about it.  (I am aware Saul did not actually get struck down on the road to Damascus). 
I do pray- but not for relief.  There is a Catholic prayer that you can ask Christ to take your suffering and use it. Here is a link to the prayer .  I like the idea of my suffering being offered up for the life of the world.  I buy a lot prayer cards from this site, I like his prayers and he has a good ministry.  Whenever I buy a few cards from him he always send me twenty or thirty, but I digress.  

I am an optimist in the sense of Thomas of Aquinas or I guess more accurately
 Gottfried Wilhelm Leibniz.  You are welcome to read about optimism from these two giant thinkers but I will give you a brief and incomplete sense of what I mean.  I will start with a few postulates that I know cannot be proven but I believe.  God sees all, the past, now, and the future.  God is good.  God is all powerful, including complete power over Satan.  That being said the world he created must be good and following that the pain that I experience is good.  Not good in the immediate sense that we can understand as humans but good in the sense that is part of God's plan which will always be for good even if it is beyond our understanding.

Now I know at this point you are probably wondering is he ever going to get the gun into his mouth?  The answer is yes the gun will end up in my mouth shortly.  I rambled on about my faith because it is the reason I keep a positive attitude in the face of adversity.  I have never questioned my faith or that my suffering is for the good.  I have questioned my ability to live with the pain.

I should also specify the month before I put the gun in my mouth was no picnic.  The level of pain I experienced  effected my ability to reason, my brain started to lose its form.  It started to become the consistency of runny Malt-O-Meal and then individual grains of Malt-O-Meal began to swirl and it became difficult to keep two of them together to form a thought.  All I could think is that the pain would never lesson and would never end.  I never wanted to take Remicade and my mushy brain did not consider it as the only or most desirable option.  I own a gun and it began to speak to me.  It would say I can end this and send you on, the pain will end and you will be free.  As the pain would become acute, what the gun was saying started to make a lot of sense.

I would sit in my chair and I would need to take a shit.  It would hurt so much to get up I would start to think, how bad would it be to shit myself?  I never did, at least not in relation to pain.  There was one instance but that is for another post.  I could not sit still and I could not move, I was in a lose lose situation.  I would think about killing myself in the abstract to start with.  Could I still go to Heaven if I shot myself?  It was a nice mental exercise but as time went on and my reason left me the thinking about suicide became less abstract and less philosophical.
I own one gun.  It is a .357 Magnum handgun.  I went and opened the safe and took out the box that held the gun.  It is looks like silver and smells of gun powder.  The silver almost looked like it was moving.  The smell was of cheap gun powder that is dirty and burns slowly.  I held it with both hands letting it rest across them almost like was holding a prize fish for the camera.  It was cold and heavy in my hands, it felt good.  It was not far from where the gun was resting to my mouth.  The distant was covered quickly but in slow motion and then it was there.  It was colder in my mouth than in my hands and I was surprised it tasted more like gun powder than metal.  I knew I had an alternative in the short term; I could try Remicade.  When your brain is occupied with pain it does not leave a lot of room for rational though. There are reasons I put the gun away, but it was hard.  I do not remember putting the gun away but I did.

Now what is the moral to this story?  There isn't one.  Sometimes it gets better, sometimes it stays the same, and sometimes it gets worse.  The only thing I have to tell you is I understand and I do not regret being alive today.  The Remicade has reduced the pain and I feel re-energized.  That being said the pain is returning, not as bad and not as relentless as before but it has left me afraid.  Afraid to sleep on the chance that I wake up and my respite is over.


The majority of my blog posts are stream of consciousness that spewed from brain, spell checked and the posted.  I thought that this was more important topic than most of my posts so I had some editorial from a cousin and would like to thank her here.