Question

I have started to write this blog post four different times, this being the fourth.  The first three are finished and by that I mean they convey ideas in a concise, well as concise as I can write, fashion but they are all talking around what I really want to say.  I am scared to say what I want to say and I hate that fear is preventing me from doing anything.  Is fear is going to determine what I say?  I don't know.

Sarcoidosis is a disease of the immune system.  At one point when people asked me what sarcoidosis effected I would tell them my immune system and all though that is a concrete answer most people do not have a tangible understanding of their immune systems and hence it was actually a nebulous answer.  So after a while I began to list off the parts of my body that where effected by my defective immune system.  At this point I think that most people thought of it as a disease that effected certain parts of my body rather than a disease of my immune system.

The immune system is present everywhere in your body, a disease of the immune system can effect anywhere, anywhere.

The last four years of traveling the sea of sickness have been varied.  At any given moment things may be calm and then seemingly out of nowhere the sea becomes choppy.  This next little bit I am not sure whether I have shared in the past or not but I am about to share it now.  I am sicker now than I was four years ago and I will probably get sicker every year going forward and at some point I will probably die from sarcoidosis.  I have come to peace with that.

More people than I would have expected have told me they have been inspired by how I have handled being sick.  I do not want to disillusion anyone but I do have bad days.  I have not taken a survey of everything I have posted to Facebook, Twitter, or my blog but it has been positive for the most part.  I came to that conclusion because I do not think anyone would be inspired by me if I was constantly bitching about my circumstances.

Last week was not good and this week has not been much better.  As time has gone on new parts of my body have joined in the sarcoidosis revolt.  I have had cognitive issues for a while and to be honest I am not sure how long ago that while is.  I know I was still working so probably within the last couple of years.  The cause of my cognitive problems were never pinned down.  There were lots of possible culprits from drug side effects to my endocrine system and of course maybe the brain.

I am not going to go in to all the detail about the saga of when I first experienced cognitive issues but I will touch on some highlights.  Losing what I would loosely call my mind was/is shitty and scary.  It is not like the TV show House, the cause of my cognitive issues back then were never discovered.  Then it got better to the point where I could function again and none of the doctors were really interested at that point.  I have had a neurologist for a long time because of the nerve damage caused by the sarcoidosis but even he was like it is really hard to track down a cause of cognitive problems if they are not happening right now. 

The first time I went to a doctor because of brain issues was due to an email.  I knew I had been having some trouble for a while but what figuratively drove me to the doctor was an email I sent to a coworker that was gibberish.  My coworker replied to my message that he did not understand what I was saying.  Once I read the email again it was obvious to me that something was wrong but I do not know what.  Again it was so scary and so shitty that when it got better to where I could function I was more than happy to write it off as a side effect of some drug and let it go just like my doctors did.  Anyway what are the chances that sarcoidosis would be affecting my brain?

Secret side note it is terrifying down to your bones to think that anything is effecting your brain, your brain is who you are.  It is fine to think that a disease has influenced how you think about things but nobody wants to think about a disease damaging your brain and changing who you are.

The reality of life and more accurately death is even if the odds of something are very slim it is still  possible or the odds would be zero.  It is almost inconceivable to think of someone being killed by lightening or a great white shark and the odds are so slim that most people think of it as an impossibility.  That is how I viewed the chances of sarcoidosis effecting my brain, as an impossibility.

Secret side note The Nile is not just a river in Egypt.  I may have been in denial about the effects of sarcoidosis on my brain, may have.

Get ready I am about to get to the point or in this case the question I want the answer to but first the actual events that were the impetus of this post.  I deactivated my Facebook account during a panic attack.  I messaged one friend with my email address and then without a public word I shut down my Facebook account.  For people that have not had a panic attack it is a difficult to understand.  What I felt was the sense of impending demise and doom that was crushing me.  Since I have been ill I have been close to death in a real tangible way twice and having a panic attack feels worse than the feeling of actually dying.  It is terrifying to be terrified by irrational emotions and for me it was made worse because I knew they were irrational but that did not effect how "real" they seemed.

Facebook has been a lifeline for me, a way I am able to interact with the world outside.  That day the thought of being able to see everyone's post coming through in real time and that everyone also had the ability to instantly message me was overwhelming.  I thought as though this would somehow cause my death and the thought of dying, well it is hard to describe.  Like I said before I have made my peace with death and while I am not anxious to head on out as it were.  I know death is coming for us all and for me he is probably going to take the sarcoidosis train. Those facts do not make me anxious.  Facebook's ability to convey information in real time and that somehow causing my death made me anxious.  I know that is not rational and that changes nothing.

Anywho a couple of days went by and I had returned to a rational but still anxious state and my God parent tried to get a hold of me.  I had CCed her on an email to my Deacon at one point and just assumed she had my email address and I knew she had my phone number.  The beautiful, kind and sensitive lady that she is she sent a message to my wife to find out how I was doing because she was worried.  Once this was brought to my attention another thought occurred to me, what if I was causing pain to other people that care about me by my sudden and unexplained departure from Facebook.  I realized that relationships come with certain responsibilities.

I know I am a little old to just be realizing relationships come with responsibilities but as some of you may know I had a lot of issues growing up and it would be fair to say I was an asshole for the most part until I met my current wife.  The point being that it is only recently that I have had a significant number of friends because in the past I was an asshole.  What is this paragraph about?  It is about me making excuses why it did not occur to me to let everyone know I was okay and I just needed a break from Facebook.  I apologize, there are no good excuses and sincerely to everyone who has taken the time to be a part of my life I am sorry I did not consider all of you.

Once I had this epiphany I reactivated my Facebook account and wrote my last blog post and I added a comment on Facebook that was more candid and direct about my brain damage and the panic attack than would normally be in my character.  I was not raised in a friendly environment and any sign of weakness was used against me.  It was hard for me to lay out that I was not only physically weakened by sarcoidosis but that my brain, my mind, the core of who I am had been effected as well.  That was the most difficult communication I have ever made.  I did it and I was proud that I was honest with people I had relationships with.  No more lies of omission, full disclosure.

Secret side note the following may seem like a passive aggressive way of communicating that I was unhappy with people that messaged me on Facebook, that is not the case.  From my past experience with most people when this type of question is asked of them directly they immediately become defensive and a fight ensues fairly quickly and on the other hand if I ask it in this way I find that the guilty parties often think I did not mean them and they answer.  I am not making any judgements about this behavior, it is what it is, I am sincerely trying to get answers.

On Facebook I added a comment with the blog post that although my Facebook had been reactivated to please contact me through email that I would not be responding to Facebook.Everyone probably just went I bet I know what is coming next and I am guessing that you are guessing correctly.  Immediately people started sending me private messages on Facebook and I felt like I had to respond, I know that is irrational but that is what I felt.  I communicated that they should email me that the private messaging was freaking me out.  First question: a few people stopped sending me Facebook messages but never sent me an email, why did they not email me?

Next there were a second group of people that even after I requested they email me they continued to send me private messages on Facebook.  Second question, why did this group ignore my individual message to them to stop using Facebook and to send an email instead?

I feel a welling up of anxiety at this point, like a glass of water that is just barely overfilled and the surface tension is all that is keeping that water in the glass.  I am going to continue but it is hard, it is frightening to reveal that I am vulnerable.

Anywho what follows is some of my guesses as to what happened and I am hoping that someone will tell me I am wrong because if I am right I do not like the answers.  For group one I think it is possible they did not read my comment carefully, they did not think it applied to them or they thought I made the post and deactivated Facebook for attention and they were giving me what they thought I wanted.  I will be honest I am not a big fan of any of these answers but I can not think of any other reasons.  The answer for the second group are the same now that I think about it except that since they ignored my message I am leaning towards the second group thought I was asking for attention.

Part of the reason I write this blog is for attention.  Not the kind of Munchhausen attention of people feeling sorry for me but the kind of attention that indicates I am part of the world of men.  That no matter how alone or hard the journey seems that all mankind are brothers and sisters and there is someone in India that was touched by my blog and I am part of them.  That person in India will always have that part of me and I am not alone and part of the whole.  Do I think that I will change the world with this blog?  Maybe I will change the world if you believe in the Butterfly Effect like Lorentz but I know I am not making big changes but I am just like Ringo Starr being in the Beatles, I am happy to be along for the ride and part of the group.

Secret Post Script

Everything I write on this blog is true, I may leave out the bad parts a lot of the time and that does skew it towards the positive but now I have made full disclosure and everyone is aware that chances are things are shittier than I say they are here in my blog, Hell even I get tired of my own bitching.

Super Secret Post Post Script

I have spoken with my neurologist and my pulmonologist and we are doing what can be done and as I stated before it is not like House.  I am taking massive doses of steroids and my aches and pains are fading my brain has become more spewy, meaning that a lot of stuff comes out when I write but it is crap and hard to keep a handle on.  Actual writing is still hard and in much the same way now there are just reams and reams of it to try and post.  The steroids have helped my anxiety but it is still there and it is still new and I will not be the same.  There has been damage done to the old brain but as my doctors remind me if the active disease function can be stopped the brain has an amazing way of finding new ways to get things done.

The next bit is uncomfortable.  The doctors have never been able to stop the active disease function and we have tried every drug there is even a little bit of science on.  The last time I spoke with my doctor he was asking if on the online support group I am in there had been any talk about new drugs being tried.  I have not made a decision if I am going to take drugs based on the dart hitting the dart board method of selection but even if I do... I am probably going to get sicker and sicker and I will no longer be the person you know.

If you would like to continue on with me during my final walk down the way I will always do my best to look on the bright side and to be funny and ironic and sardonic like I have always been but in a real tangible way I am becoming a sick person.  Not just in body but in mind and I can not imagine what that will mean.  We all have read Plato or some synopsis of Plato in a text book so we know self is ever changing but we usually have a pretty good idea what self we will be tomorrow.  I do not know what self I will be and honestly no one knows what self they will be tomorrow but they have the illusion they do, I do not have that illusion.

In the end maybe Plato was full of crap and Aristotle is right but you know what I am going with Plato on this one.

ADDED CONTENT I am not kicking off anytime soon as far as myself or my doctors know!

I wish all of you fifteen minutes of peace followed by another fifteen minutes of peace.  If you do not love yourself change what you can and forgive the rest and do love yourself, then love another person following much the same pattern and then think that we are all star stuff and marvel and enjoy the universe.  Things could always be worse, what if I had not grown up with Carl Sagan?  I certainly would not have enjoyed my life as much as I have.

Panic Attacks and Bleeding (Not at the same time, well sometimes at the same time) (Hey maybe do not eat while reading this either)

Sarcoidosis is a funny beast or I should say my sarcoidosis is a funny beast.  Sarcoidosis is usually boring and not really funny or beast.  Most of the time sarcoidosis behaves in a predictably mild way but there are always outliers even if you think the world conforms to the Bell Curve.  Once you start talking about the outliers in the world of sarcoidosis you are talking about diversity, a community of individuals.  That was fun to write, I like words, anywho the point being that my sarcoidosis is my sarcoidosis and my medical team has reached the point where there is no data, there are no educated guesses, and in fact the best we are shooting for now is informed guesses.

You may now be asking yourself what does that preamble have to do with the title?  The answer is simple, I do not know, I am hoping it will tie in before I am done writing.

I sleep laying on a blanket I place on top of my sheet.  Over the past four years of being sick various substances have leaked out of my body during the night and now for easy clean up the blanket is in place.  This morning I woke up to a bloody blanket and it was not bloody like a had a bloody nose in the night bloody but horror film bloody, actually the more I think about it, it was probably more a thriller film bloody and not a horror film bloody.  Standing next to my bed it definitely looked like a crime had been committed.

Sarcoidosis effects my skin and rather than get all technical I will give you a few easy ways to picture it.  The first way it effects my skin is I have skin lesions that look like a really bad rash and having had some really bad rashes (I prefer not to talk about those details) they feel like a really bad rash.  They will ooze and fester, that was also fun to write.  I do not think they actually fester and truthfully I can not remember what fester means but I love saying it in my head, fester fester fester.  Anywho they itch like crazy, to the point you want to take a garden rake to them but don't scratch them not even with your nails.  What happens if you do?  Well apparently the rash is just the top manifestation and there is damage through all the layers of my skin and if you scratch they bleed.  They bleed like someone does when they are being scarified in a movie (I was left to my own devices as a child and my own devices started with Hammer Horror and went from there).  They bleed like a hose put on a trickle to water some plants and direct pressure does not seem to be doing in the trick but it is hard to tell because you are still scratching them.  I would rather be in pain than itch like that, it literally tested my sanity.

At this point I do not really have problems with my type one lesions anymore.  They always occurred on my shins and at this point I have a four inch by six inch scar on each of my shins.  When those lesions flare up now so to speak the scars will raise a quarter to a half an inch and it kind of bothers me but there are not a lot of itching sensors left in my shins so I can tell something is going on but not enough to distract me from my other symptoms.  When the flares are really bad my scars will open and bleed a little even today but not like the good old days of first being ill and not enough to cause my morning crime scene.

As I see this blog post lengthen I am going to be quick about the next two types of skin lesions and kind of lump them together.  I get two different kinds of lesions on my torso and my non shin legs (mostly by my hips close to the torso).  They are different but they are the same.  They both seem to eat me from the inside but in a more subtle way, there is no itching.  At some point (that point varies from lesion to lesion) they will begin to bother me and it is hard to describe.  It kind of feels like an insect walking across your skin but the insect is going around in a circle in one spot on your skin but it does not feel like an insect and you go to investigate because you can not tell what it is.  Those words were not fun to write, that description is not right and I can not find the right words.  Maybe the way this feels has not been described in the English language before or maybe my derivative writing style can not muster the vocabulary necessary to describe them but either way that will have to do.

They usually occur in places that are not easily viewed by my naked eye (or my eyes with glasses on  for that matter) and I will reach to feel what is going and it is like a volcano BOOM!!!!  I will bring my hand up and there will be blood and bits of tissue and there is a hole left in my torso or legs sometimes as a big as a golf ball!!!!  That is right exclamation points!!!!!  These holes will bleed and bleed until they do not feel like bleeding anymore and my efforts to stop the bleeding have little effect or maybe no effect and I am just kidding myself.

One time when I was still working I went to the bathroom, wait for it, wait for it and I sat down to use the facilities and my underwear was red with blood.  One of my lesion friends had exploded with me none the wiser.  Now I am sitting there doing my business that I came to the bathroom to do, thank goodness it was a single bathroom and I was not in a stall, and I am thinking about how to proceed in this situation.  I grab some paper towels and line my underwear to form a makeshift adult diaper designed to catch my blood.  I am not usually thankful for being fat but this time I was, nobody was going to notice I had a roll of paper towels in my pants and no that is not a sex thing.

Then I proceed to perform first aid on my new found hole.  It is bleeding and after ten minutes of direct pressure I am thinking that somebody might need to use the bathroom and I better just go with what I had to go with at that time.  At that time I had a bleeding hole and some paper towels, I tore off some paper towels and shoved into the whole thinking that if I sat still it would give something for the blood to coagulate around and I could get through work.  Now before you deride this idea who has not shoved some toilet paper up their nose to stop a bloody nose?  Now you might be telling yourself that a bloody nose is not the same as a bleeding hole in your leg and it turns out you would be right.

I did make it until the end of the day and when I stood up to go home everything felt wet.  I had black jeans on, thank God, and I sat on a black vinyl chair, thank God but even with those two factors working towards me I was panicked because there was a pool of blood in my chair and even though my pants were black I thought I might drip blood from my saturated Levi's.  What did I do?  I searched my cubicle that I had never really gone through since I had come to occupy it and I found a dusty roll of toilet paper and you know what?  It was beautiful and I was able to get out to my car and all was good with the world, bleeding embarrassment avoided.  As I write this I am not sure why I have included this tale of woe but I do not care it is included and it is not going to be excluded BOOM!!!!

I think you the reader has probably ascertained that I have been bleeding for a while and like a lucky MacGyver I find away to fix whatever problem the blood may bring.  Which leads us to today.  This morning when I saw that blood I had a panic attack.  Not because there was blood on the blanket, not because I was bleeding but for a reason I could not readily describe to you.  Does that sound irrational, maybe a little crazy?  Yes, boom?  I guess I would probably not have been panicking if the feeling was rational.  This blog post has become way to lengthy so Google the symptoms of a panic attack if you want and just be aware my experience is pretty typical.

You ever see that bumper sticker or T-shirt that reads of all the things I have lost I miss my mind the most?  In the past I never thought it was particularly funny but now I find it hilarious in an ironic kind of way not really laugh out loud kind of way.  A couple of weeks back I was complaining about how hard writing had become but now that does not seem to be that big an issue, now don't get me wrong I still can't write and this little post here took me eight hours to spit out and contains no editing but it does not seem that important when you can feel the pressure of an anxiety attack forming and you know there is no reason for it but it still keeps coming.

I shut down my Facebook account because I felt like it was crushing me under its enormous weight and I have shut down everything but my email and phone.  I will use email still but chances are I will not answer the phone when someone calls and chances are even greater that I will not pick up the phone and make a call.  I don't want to leave the house and if I was feeling better physically I would be in a blanket fort as I am typing this.  I had every intention of shutting down this blog but it is terrifying me like any other contact with the outside world but I got an email from a friend of mine today.  She said she had been inspired by my blog and had made changes in her life for the positive because of what I write here.  She inspired me and all though my hands are trembling and it feels like some giant is crushing me in his hand, I do feel a little victory now that this done.

All of the things I have lost I miss my mind the most and I am discovering there is something new to lose everyday, cognitive, emotional and I am literally terrified to find out what I can lose next but I have friends who care and I will post this to Facebook and tell everyone why I will not be around on the social media but well, ummh I am scared to do that but I will.  I have friends that care about me and even though it is hard I care about my friends.

(My wife will fix most of the crap mistakes later so if you read this and it makes pretty good sense I need to thank her, I am also terrified to be with anyone including her but she really cares about me and she will hold me when the terror comes and for a few moments love does conquer all)

Doctor Today (Short and Sweet because I am tired)

I have not talked in detail about my current symptoms or what kind of treatments I have been on for quite some time.  When I started this blog my intent was pretty simple, I wanted to tell the story of how sarcoidosis has effected me and by doing so help myself and others.  I thought the blog would mostly be about treatments and doctors with a little pinch of how with the help of my wife and Jesus I managed to keep my head up and keep slogging along with a smile on my face.

At the beginning I kept to that format but over time it has become a once a week journal that whatever is at the forethought of my mind is what gets put down into words.  I have chronic and refractory sarcoidosis so being sick does come up in my weekly foray into the old noggin but it is no longer the direct focus.  When you look at the title and the first couple of paragraphs I know you must be thinking finally he is getting back to some treatment tips and tricks.  That is not the case.

Today I am four years and a couple of months into the sarcoidosis saga.  There are still no drugs approved by the FDA (Food and Drug Administration) for the treatment of sarcoidosis and I have taken all the drugs that are recommended by the experts and that brings us to my appointment today.  Two months ago is the last time I saw my doctor and we had decided that it might be time to get off as many drugs as possible in an attempt to differentiate between side effects of drugs and symptoms of sarcoidosis.

I was disappointed to find out that they were all symptoms.  I am usually not deluded, well at least not about being sick.  My hope was that I was no longer sick and that when we stopped the drugs I would start feeling well, maybe even good and we would find all my complaints were just a horrible set of side effects from the drugs I was taking and that the sarcoidosis had gone into remission.  What did I find at the end of the drug free rainbow?

I found that my complaints are the result of either sarcoidosis or as a yet to be diagnosed disease to be named later.  Things are looking a little dark right now and I would like to inject the light of hope.  I have not given up hope and if anything I am more hopeful now than I was before I was sick.  My wife has held to her wedding vows and stands by me in sickness everyday regardless of the toll it takes on her.  For the record that is not a hyperbolic statement to jazz up my blog post but simply the beautiful truth about the lovely lady that is my wife.

What my wife does would be impossible for me to accomplish and she amazes me daily.  I will talk about my wife more in the future but I must stop now or this post will not be finished today.  I also have some amazing friends and family that on good day wash away the troubles of the day and help to furnish smiles for my wife and I.  I have faith in God and I hope that my life is useful in his plans and I do not foresee that hope abandoning me.  Hope insertion complete, enjoy the light!


The final paragraph is here and I will finally get to my doctors appointment.  I must first reiterate how exceptional my pulmonologist is as a doctor and a person, he is exceptional.  My doctor and my wife are concerned about my quality of life, I think that is because I have indicated my quality of life is low.  Don't get me wrong I have things to live for and enjoy everyday but I would love to be able to go to a museum or a movie without a huge amount of suffering.  I wish that suffering was not the correct word to describe what an outing of any kind brings me but it is the correct word.  The suffering is enough these days that I only leave the house for Mass and doctors appointments.

I was wrong but I swear this is the final paragraph.  My exceptional doctor is going to do some research and try and to come up with a treatment.  He is going to read a lot of papers in medical journals and try to choose the best experimental treatment.  He cares, he is going to read all those papers to help me.  More than likely he will never use that knowledge for any other patient.  That is a good doctor.  I will keep everyone informed of what we are going to try next.  Remember to have hope.  Most people are good and I know God is good and in between those things I just try and have happy thoughts.

WASP! (A lesson learned from spending time with my dad, whom I still love and miss)

In 1980 my dad purchased a black Datsun king cab pickup new from the dealer.  My father was a frugal man and he did not see any reason to purchase air conditioning.

I was twelve in the summer of 1985.  My dad and I were headed north on I-15 just outside of Ogden Utah.  It was hot and we had the windows rolled down.  The temperature was in the upper 90's but cruising at 60 mph we were comfortable.

To break up this idyllic scene a wasp flew in through the drivers side window.  It was flying around inside that tiny cab of that tiny pickup.  My dad immediately began instructing me to stay calm and that if we stayed calm the wasp would have no reason to sting us.  Then the wasp landed on my dads thigh.

He again instructs me to stay calm.  I am getting agitated and as I side note to add a little more flavor to this story, I am/was terrified of insects and arachnids.  At this point there is a sudden and violent disturbance in the force.  My dads hand comes off the steering wheel with lightening speed and he struck his thigh.  After a moment my breathing returned to normal and I had recovered from the shock and I looked over at my father and said "I thought you said if we remain calm it wouldn't sting?"

My dad says "Sometimes you get stung." and then he just starts laughing and laughing.  If you have not read my other blog posts about my dad you do not know about his laugh.  His laugh was the purest translation of joy into sound that there could be.

What is the moral of the story of the wasp and the truck with no air conditioning?  That there is pain in life and sometimes that can not be avoided, sometimes the decisions we make effect the future but we can rarely anticipate what all those effects will be, and last but not least if you have someone to share a laugh with none of that matters and there is joy in life.

I don't get squishy much but I like to say I appreciate everyone who reads this blog.  It makes me think that my selfish ramblings may help other people.  May God bless each and every one of you and may a little peace come over you tonight right when you are trying to fall asleep.  Remember you can pray for small things and some days small things are big things.

What to blog about today? (Something light no more heavy stuff please)

I have talked in the recent past about some heavy topics, so heavy there will be no recap because I do not want to ruin the light mood I am here to fore creating.  I really enjoyed the some of the words I used in that sentence.  To the question in the title, maybe my sense of humor and lack of filter?

I have a great sense of humor, I mean I am funny.  Is there an objective measure to this?  No, in fact the only metric I am using is how often I make myself laugh and let me tell you that is a lot, no really I crack myself up.  How do other people react to what I think is funny?  That is a mixed bag.  I think it would be safe to assume that since I have been married three times that at least those three women were able to if nothing else tolerate my humor.  I am going to extrapolate from there and say since I am not physically attractive and by no means wealthy or even well off that my sense of humor is part of what attracts women to me.  There are other things but I am going out on a limb here and say that my funny bone is part of the package that entices women into my lair.  I am not sure if I mixed metaphors just then but it was bad and I am not sure if it is bad in a funny way or just bad.

When I first began to actively pursue the eighth wonder of the world (women) people immediately thought I was funny.  Unfortunately at that time the humor was for the most part unintentional.  Then and now I lack a normal understanding of what is going on in most/some social circumstances.  Unless someone is threatening me or has threatened me in the past I am not intimidated.  This sounds like I am bragging but no I am not.  Ninety percent of the time it is a minus to not have any caution or a fear filter as I like to call it.  It does sound counter intuitive that lacking fear is a bad thing but being intimidated is usually a good thing at a first meeting or a second meeting or a meeting where you do not understand the social norms.  Yes I am building to something be patient grasshopper, I am trying to be concise and failing. 

Fear has evolved in humans for a reason and the fear filter as I call it has an important purpose in allowing us a society to have nice things.  There is nothing wrong with being afraid or some might use the word concerned but I think in this context they are interchangeable and we just say concerned because we do not want to look weak.  Any way there is nothing wrong with being concerned about negative consequences and avoiding them. 

Here comes the funny story, at the time the story I told was not funny but I think twenty years later it is funny in the context of the retelling but let me know.

When I was twenty years old I had been married for a couple of years and my wife at the time was generous enough to pay for me to go to college while she worked.  I was going to a community college and had a grade point average that entitled me to free tuition.  As stated in previous posts I am smart but again not smarter than the smart guy smart so even though I was getting straight A's it must be stated that regardless of whatever a teacher tells you they will grade on a curve even if it is subconscious and just because you shine compared to other students.  I do not think it is arrogant to say that I did shine compared to most students there.  While the stereotype of the community college as a bunch of stoners and underachievers that could not get into a real college is far from accurate it was not the Ivy League either.

Just a side note here, it looks like it is really hard for me to be concise and tell a story in a short form or we could even say a short story is not a tool I possess and is beyond my ability.  Now back to our story.

Since I was the cream of the crop at the community college I was also asked to join an honor society called Phi Theta Kappa and I did join.  I have a hard time saying no to women and when I was twenty it was even harder for me to say no than it is now.  An attractive single mother encouraged me to join the local chapter and although I had no intent and there was no chance of any kind of physical interaction with her beyond I hand shake I still did not say no regardless of the fact I had no interest in an honor society no matter how good it would look on applications to other colleges.

After I joined I found out that most of the members of Phi Theta Kappa at the community college were women, at least the active members that I actually saw were women.  I was asked to join a committee by a woman and I did not say no to that either.  My memory fails as to the exact purpose of the committee but it had something to do with a service project for young adults still in high school and junior high.

Now I will paint the scene.  We were in some kind of multipurpose room at the community college discussing these young adults and the issues that they were facing.  I had just read an interesting article about how young women in Utah county, Utah were having anal sex and oral sex at increased rates compared to previous generations.  I think that is probably enough painting but I should mention one more thing.  This was before the internet was a readily available user friendly porn delivery system.  This is back in the day when you had to use Unix shells to access the internet and things like gopher, telnet and multi user dungeons were really cool things.  The point is that young women in Utah country were not learning about anal and oral sex from watching porn on the internet.  They wanted to stay pure for their husbands, crazy I know.

Side note, to get porn delivered via the internet was not an easy task even for the computer literate of the time.  In my opinion that is why internet exploded and became user friendly, non computer literate people needed to get porn from the internet.

Back to the story and seriously I need to work on being more concise, seriously!  Myself and some single moms from Phi Theta Kappa are sitting around a table discussing young adults and the troubles they were facing compared to the troubles we faced as young adults.  I spoke because I lacked a well developed fear filter and I did not consider the consequences.  The content in my head began to flow from my mouth.  I had just read an article about teens and I thought I should share it with the group and share I did.  I told six single moms that it was fascinating to me that the young adults were having anal sex and oral sex in order to maintain their virginity.

I was sincerely fascinated and I began to elaborate my position to the six moms.  I indicated that when I was in high school it was easier to get a girl to sleep with you than it was to get a blow job.  Now that is not a direct quote but it is pretty close and I am sure that I said blow job and not oral sex, I just said blow job.  To continue my point I also stated that nobody ever had anal sex.  I guess it is a small blessing that I did not say butt sex or use some colorful expletive but it was a small blessing.  I had now stated the differences between now and then as far as sexual norms and so I finished by saying I could not understand why these people considered themselves virgins even though they had oral and anal sex.

At this point there six sets of eyes staring at me, not blankly but I am not sure how else to describe it.  They were staring at me intently and it was not good.  One of the moms present did speak up and say that was strange and then I was never invited to another meeting and they did their best to avoid me.  Punchline delivered, funny?

Sarcoidosis and Cognitive Failure or a Passive Aggressive Attack on my Sister (If I am at full strength maybe both?)

I have a lot of blog posts in the fire, usually somewhere between ten and fifteen at any given time.  I  will start a blog post and sometimes after a couple of paragraphs I will start to tear up.  At that point I say to myself I will put this on the shelf for a while until I can get some distance.  I then come back to the post later and I will have so much distance I have no idea what I was talking about, I mean I know what I was talking about but I do not know what the point was or is or any of it really.  Unfortunately a lot of this is because of sarcoidosis.

If you found this post because you have sarcoidosis and you just read that last line and went holy crap I have been telling my doctor that I have cognitive issues and he has been telling me that it has nothing to do with sarcoidosis, for you I have included the PDF below which is as it states a study of the Everyday Cognitive Failure in Sarcoidosis.  Going forward you will be armed with science and you can tell your doctor look at this study and then if you are not a dick about it he will say that is interesting (Important you not be a dick, doctors usually have a pretty good sized ego and no one likes to be told they are wrong).

Hold your horses the PDF is coming but I would just like to temper you excitement with a caveat.  This study looked at the effectiveness of TNF inhibitors for sarcoidosis and its impact on cognitive issues.  There were positive results and a lot of sarcoidosis patients were helped with their cognitive issues by TNF inhibitors but not everyone was helped.  I took Remicade (Remicade is a TNF inhibitor) for six months and did not experience any measurable benefit for any of my sarcoidosis symptoms including cognitive function.  All right here is the link and remember when you bring it to your doctor do not be a dick.

Everyday Cognitive Failure in Sarcoidosis

I started this blog to memorialize my travails and troubles with sarcoidosis and in doing so perhaps gain some catharsis (I know I am using the word wrong, I have cognitive failure and besides that it is the common use of the word so shut up) and maybe, maybe help someone else going through the same thing.  As my illness has progressed it has become harder and harder to write, I was going to add some other descriptor here but I think that is enough, each week it is harder to write than the week before.

During the week I usually dictate most of the post into the Blogger app on my tablet.  The voice recognition on the Nexus 7 works well, not a paid endorsement just a review.  I dictate the post because my difficultly in writing creates a barrier between my thoughts and the virtual paper of the interwebs.  Cognitive failure does affect my ability to speak but most days I talk real good.  Depending on the subject sometimes it can be downright fun dictating the post.  I do crack myself up.


I usually will dictate a one or two blog posts and then focus in on one as the week goes on.  The day before my self imposed deadline I will not allow myself to do anything but write until the post is done.  Right now I have fourteen drafts under construction and I try not to start anything new and instead force and end to one of the ones lying around.  My thinking is that I am avoiding some part of myself in each of those drafts and I should push through and finish them to get that really good catharsis, that deep down catharsis.

That last day of writing is awful, it is all editing.  I used to be smart not like the smartest person in the world smart but pretty smart.  Before I became ill I never had to edit, a few touch ups here and there but what I created was pretty good out of the gate.  My grades from college will bear witness that I was not the only one that thought my content was pretty good (engineer college time not theater college time).  I never learned how to edit in any meaningful way.  Everything was thought out, in the right order and with the right words the first go round give or take.

Now that I am having trouble with the old brain I have learned editing is an important part of writing.  Brain troubles also make it difficult to learn new skills like editing for example.  That last day of writing/editing starts when my wife goes to work and I fire up the laptop and get to it.  I start by spending ten minutes wishing I was proficient at editing and then I dig in.

I begin reading I discover I have a good number of half sentences.  My wife has accused me of using half sentences for quite a while.  I will think I have a whole sentence when in actually I have cut the last half of the sentence off.  Then I start to reading the surrounding sentences because it really should not be that hard to figure out in context what the other half of the sentence should be.  I read those surrounding sentences four or five times before they begin to coalesce.  I have tried to explain before that I have trouble reading but I think this time with a real life example it may be more effective.

I will read the first sentence usually without any difficulty and then I move to the second sentence and all of my focus is required to read it and sentence one begins to fade as sentence is finished and I move on to sentence three and at this point sentence one is pretty much gone but I have most of sentence two and of course sentence three.  Now before you start worrying I am going to go through the entire post explaining what happens sentence by sentence I am not I think you the reader get the gist of what happens.

It has just occurred to me that I do not have a reading problem but an understanding, context, memory and comprehension problem.  I can read each sentence and understand it on its own but I can not keep the sentences together in context and understand the idea that is trying to be communicated.  Lately I have experienced problems comprehending individual sentences but fortunately this has not happened to frequently.  I wish my reading problem reading was limited to my writing but unfortunately it extends to anything that is written.

For a post like this one it will take me somewhere between four to sixteen hours to finish the edit.  I say sixteen hours because sometimes it will take the day the post is to be published as well as the day before to get it ready.  There are a couple of factors, one how difficult the topic is and two how many pistons the brain is firing on that day.  It is hard to keep focus which is why I do not allow myself any distractions.  Somehow the distractions still find me.  The littlest things can become distractions like the ticking of clock (feel like I am in a Heart song) or falling asleep.  It is really hard to stay awake lately but that is for another post.

The reason I gave myself a once a week deadline is to force my brain to move.  My theory is that it will keep what I have left upstairs lubricated and flowing freely.  Posting has become like detention and not in a fun Breakfast Club kind of way.  I am going to search for the joy in writing.  I think the lack of joy may be the reason that a lot of bitching and moaning has been going on lately.  It also might be that being sick sucks and sometimes it gets me down or maybe both, who knows?  I offer no guarantees about finding the joy but some effort will be put in.

I  like being funny.  I love to see people smile.  I keep a mirror with me in case nobody smiles when I am funny because if nothing else I crack myself up.


The contrast between the ease of dictation and the sorrow of editing makes the sorrow that much more bitter.  The ease of the dictation might also explain the fourteen drafts and the long rambling posts.  Easy to dictate hard to edit.  I think I might ramble in person as well as online, the hard time with editing may be in general not just when I am dictating.

Now for that passive aggressive attack.  Okay not really, this post started because I was mad at my sister.  It quickly took a hard right but I think I can squeeze in what is left of that attack here at the end.

Not this last Sunday but the one before that my sister came to my house for a visit.  It was a nice visit and I truly love my sister and I appreciate the effort she has put forth to stay connected and be a part of my life (that was a lot of ands).  For all of my life my sisters and I have teased each other.  Outside observers have called our family teasing a blood sport and tears have been shed on more than one occasion.  Now there is some color commentary and history of what goes back and forth between my sisters and I.

My sister mocked my brain damage.  I was bothered at the time and brought it to her attention but not that forcefully.  Either I had just said something intelligent or she was referencing one of my posts that was intelligent.  I can't remember which but she said that my brain damage was obvious.  This was sarcasm and the gleam in her eye and smile on her face did not make me think of love at home.  As time elapsed the bother transitioned to anger and I started writing this post I think as a passive aggressive message to her.  I mean look at the scientific paper I have included sis, my brain damage is not to be mocked.


I began writing and some of the anger was for my sister.  I was angry that my sister thinks I mention brain damage in order to milk my illness for attention.  I do not get a lot of real world physical assistance from people so she must have thought I was being a martyr to garner attention.  I do not seek attention for being sick.  I seek catharsis and that is my main motivation in writing this blog.  There is some ego involved and I would like people to validate the way I persevere despite what comes because it is hard and no lie I would like the occasional high five.

As I keep writing I think, does my sister think that my post about suicide was about getting attention?  Does my sister think that I have exaggerated everything and that I am doing it all for attention?  Sometimes she does act like that.  Now right here I pause and think the last two paragraphs should all be in capitals to really punctuate my discontent and make it jump off the page and then I think maybe it might not all be about my sister.  What my sister did is not out of the ordinary for us.  My response should have been it bothers me when you make fun of my brain damage, I think you are minimizing the severity of my illness.

Even after I realized it was not out of the ordinary I was still angry.  Anger completely disproportionate to the offense.  I find that unexplained anger is usually just redirected fear.  What are things that I am afraid of that might be relevant?   I am afraid of being forced to rely on people and I am afraid of being pitied.  I am afraid that I will be relying on people outside of my wife for my day to day care and I am afraid that those people taking care of me will pity me and I am afraid that the world at large will pity me and I of course will be unable to stab them.

I think this post was about my fear, sorry sis :(

Does Jesus hate me and gays part 3 (Have I offended you or do all victims go to heaven?)

There are a couple of things that I need to explain before you read any further, first I did not intend for there to be a part three and second I wrote parts of this post at three different times and of course the way I think and feel have changed over time.  If it seems a little disjointed that's because it is but honestly most of my posts are disjointed so you will probably not notice a difference.  Thanks!

The genesis of this post is a text message my wife received the day after part 2 in this series had been posted.  As you may have guessed the text was from the former friend that was the topic of part 1 and 2 and from here on will be refereed to as the former friend.  In part 2 the former friend had said this to me after she was no longer my power of attorney:

"No problem. Remember we're available to help in any way you need. If this is the result of anything I've done to offend, please let me know so I may apologize; I love and value the two of you."

I assumed this was genuine and as anyone who read part 2 knows I reached out to my former friend to explain what I had found offensive, long story short she told me to shut up and I was to never mention what had offended me again.  Now that the exposition has been finished here are the contents of the text message that was sent to my wife, the only thing that has been changed is my wife's name was taken out other than that it is a direct quote:

"Hey Fats Wife, I haven't heard from you in a while, so I assume I have offended you. If so, I beg your forgiveness, and I'll be available if anything changes."

Now when I read this I was mad, not angry, mad.  Mad is more emotional than angry, it is based more in the gut than in the brain and the main ingredient is pain.  To tell the truth mad is always pain that is masked and that is done to try and protect yourself from more pain.  There is pain throughout the words that follow and I lash out at times during this post.  A part of me wants everyone to feel that pain and betrayal and as it is said misery loves company.

I will try and distill that pain into something we can all use and learn from.  All of what follows is speculation on my part.  I think the choice of words offend and offended from the two messages are key to how my former friend continues her narrative that she is the victim.  I think her thought process is that if she is acting in a "Christian way" and someone is offended that is on them and has nothing to do with her.  I think she bullies people from the high horse that is the "Christian way" in which she acts.  I believe she thinks that Christ has gave her a lift up onto the high horse but in fact she has climbed up there all on her own.

The previous paragraph was distilled pain which is not my favorite spirit but I do drink it upon occasion.  In the month since I posted part 2 I think about my former friend daily and I think that has brought me some peace but has also brought me some anger.  A lot of that anger is directed at myself.  How stupid am I that I missed that part of my former friends character?  Hindsight is always 20/20 and I should have seen the signs and distanced myself.  What kind of special idiot blinders did I have on that I allowed myself to be dependent on a person that had this amount of anger and vitriol in them?

That last question lead me to be a little easier on my self.  At that time I had become terribly ill and I was physically, emotionally, and spiritually weak.  I had always been the rock for my wife and now I was crumbling.  When my former friend came in and offered to shore up the crumbling rocks and there for my wife I did not do a lot of questioning, I was just grateful.  That is enough about me for now, I definitely got side tracked there but I think it is a good insight to what I have been living on this topic for the last month or so.  One more detour and then back to speculating about my former friend. 

I had a friend about fifteen years ago that was a devote Catholic and a philosophy teacher.  I had no credentials other than my own arrogance and the fact I was pretty darn smart.  We both had a love for Rene Descartes.  I will try and paraphrase from memory one point from one conversation that my Catholic philosophy teacher friend said that I think will eventually be shown to be on topic: 

First we both agreed that Descartes was a Catholic apologist and wanted to prove the existence of God with philosophy, science, you know that kind of stuff.  Not everyone agrees that Descartes was a Catholic apologist but just go with me here okay?  Second we both agreed that Descartes was a brilliant man whom me both admired for his contributions to philosophy, science, math and theology (fill in the rest yourself he did a lot of stuff) .  At the time I was an existentialist atheist and I would often say that if Descartes the most brilliant man to walk the earth failed to prove that God existed the rest of us should just give up and live our lives as atheists and pick a nice philosophy and stop killing each other over different "God" stories.  I was annoyingly self righteous back then.

My Catholic philosophy teacher friend at this point said that both Descartes and I had missed the point, you can never prove the existence of God and God never intended that we be able to prove His existence.  Jesus does not say "Prove that I exist and you will be saved" he says "Believe in the Lord Jesus and you will be saved" or in other words you must have faith.  At the time I said he was coping out and that the whole faith thing was his escape from the argument.  Looking back I can say that regardless of what side of the argument you are on most atheists and most Christians would say that belief in God is all about faith.

This is where I tie all this rambling back into the post and hope I make a point that was worth the detour.  I think that my former friend lives in a constant state of worry and fear.  I think she takes the Bible literally because for her it is then not a religious text but a scientific text book.  Once the Bible is a text book she can go to places like the Creation Museum and they will provide the "proof" she needs to know that the Bible is literally true in the young earth creationist kind of way and God has then been proven to exist.  Why is it important that the Genesis account of creation be that God literally created the earth in six days as opposed to it being literally a beautiful poem that truly expresses the creation story poetically?  The answer is simple, if it is a poem it would require faith in God as opposed to the alternative which simply requires you accept what is written in the text book and you have "proof" that God exists and no faith is needed.

My speculation is that my former friend must have everyone believe what she believes because she is trying to convince herself and not everyone else but hopes that when everyone is convinced she will be convinced.  Sadly when everyone is convinced it will only drown out her doubt while she surrounds herself with the white noise of other people but in the quiet moments that come to us all when we are alone she will still be scared and will turn to her faith and still find it lacking.  In truth she needs the Bible as her text book because ironically she does not have the faith or the belief in God and the Bible.  She judges people based strictly on the most literal interpretation of the Bible because there is not enough faith to look at it any other way.

The Bible is not sufficient for her and she requires proof that the Bible is strictly and literally correct and that is why she looks outside of the Bible to places like the Creation Museum to provide proof that the Bible, her textbook, is literally accurate because the alternative is that the Bible is not an empirical text book and the Creation Museum does not provide empirical proof that the Bible is accurate and that if you are a Christian you must have faith.

I do not think my former friends faith is strong enough for her to believe in the Bible without proof and that is why she is scared and lashing out.  I think this is why she attacked me on those occasions and it is what will drive her to lash out in the future if somebody disagrees with her about creationism or gay marriage or anything that contradicts the literal interpretation of her textbook because she is scared.

When Jesus was asked what where the most important commandments he said that in fact two commandments contain the whole law of God:

Thou shalt love the Lord thy God with thy whole heart, and with thy whole soul, and with thy whole mind, and with thy whole strength;Thou shalt love thy neighbor as thyself.

There is a lot of love there and it is what I strive for everyday.  I fall short everyday and what follows is me falling short.  I do not think it is loving to attack a sick man about his opinions on gay marriage, not defend yourself but instigate two fights about gay marriage and then when you lose those fights threaten the sick man that you will abandon him and his wife in their hour of need if he ever brings up that he was attacked by you.  I think she tells herself that she did not attack me and that I have been offended by her "Christian ways" which are not really attacks and that my wife is not upset about her attacking me and that she is also offended by her "Christian ways".  My former friend knew why my wife and I had been "offended" but if she were to acknowledge that she knew why we were "offended" then she would have to admit that her actions at least played a part in us being "offended".

In my opinion my former friend is ignoring the parts about love in her text book.  In order to be saved there is not a requirement for someone to stop sinning and in they do not even need to have read the text book (Bible) but only that they believe in God and accept his Grace.  Then the Holy Spirit will begin to work in your heart and of course you nurture that with fellowship and study.  I have been saved and I do not think you could find many evangelical pastors to say that I am saved I am now going to hell because I am pro gay marriage.  I think the important thing to do is Love thy God and Love thy neighbor and by doing these two things bring the Good News to your neighbors and friends. No where in the Bible does it say that you must be perfect and if that if you are not perfect you should expect attacks from your fellow "Christians" especially if you are sick.    

The end of the post is finally here and it is apparent to me that I have more to work through on this and although I would like for part 3 to be the end of this series I am afraid there will be a part 4 and hopefully I will not fall as short as I did here.

PS

Unfortunately it would not be hard to find an evangelical pastor to say I am not a Christian so if you wanted to use this post in discussion with your less than tolerant Christian friends be aware they are just going to say I am not a Christian.