Tuesday, December 30, 2014

Midnight Mass (A Morality Tale In Several Paragraphs)

My wife had to work on Christmas Eve until 11:00 pm so she would not have time to come and get after work and get me to the Cathedral in time for me to find a seat.  I need a seat because my poor, disabled bones cannot even stand for the parts of Mass that you are normally supposed to stand for let alone the entire thing.  Under those circumstances my sister was generous enough to haul my crippled butt and the rest of me up to the Cathedral in time for me to find a seat.

Warning details of the limitations of the sick man traveling from his sick room to the Cathedral:

My body has been not as cooperative as I would like as of late.  I wake up four or five hours after going to bed.  It is the pain that rouses me from my sleep and sometimes after a little writhing about I can get back to a couple hours of sleep and sometimes I cannot.  I keep what I call my morning MEDs by the bedside so once it has been established that sleep is actively evading me, I can wolf those MEDs down and wait to begin my day.

My morning MEDs consist of about fourteen different pills and capsules, this does not include inhalers, eye drops, and that like.  The important drugs for getting my morning started and hence getting me the ability to move are some steroids, nuerotrophins, and pain pills.  The steroids reduce inflammation, the nuerotrophic to get the old brain firing and hopefully keep me awake and the pain pills I take for pain.  Usually within one to two hours everything has kicked in and I can start moving towards the bathroom.

There are days that I do not leave the bed, sometime my morning cocktail is not enough to lift the weight of the illness (the weight of my illness is 97% Pb and Au) and the bed is where I stay on those days.  Thoughts spin and refuse to take solid form, the fever of pain (not a real fever, but a fever like state brought on by pain) spins the old merry go round in my head.  There is some time spent gnashing my teeth and although I usually don't tear my clothes and when I do tear my clothes it is usually by accident and not from passion.

I have a small holy water font on the wall right outside my bedroom and above that there is a prayer of morning offering.  The font has a small plaque showing Saint Bernadette witnessing the appearance of our Lady of Lourdes at the grotto in France.  I have an affinity for Saint Bernadette that I will endeavor to explain in a later post, this one already feels as though it is long and heavy with words piling up on each other.  I stop there and offer up my suffering and begin my day with God.

Some days the offering up of the pain goes better than others.

That was a lot of exposition, but now to Christmas Eve!  If you read this blog on a regular basis, you know I am converting to Roman Catholicism.  On Christmas Eve or more accurately 12:01 am on Christmas Day there is a Mass to celebrate the incarnation of the word (it is Christ-Mass or Christmas) or otherwise known as the birth of Jesus!

I can no longer legally drive and my wife was working until right before the Mass was to begin so she could get herself there, but did not have time to retrieve me and get me to the Cathedral.  I put out the call on social media for a ride and my sister stepped up to give me a ride.  She arrived at my house in the early evening and we watched a movie, tried to order some Chinese food (they never answered, either too busy or closed), we did order some pizza and had some lovely conversation and as the time approached, I rounded up some oxygen tanks had my sister help me with my shoes (a little awkward for both of us) and away we went.

My walker would not fit in my sister's car, but I was not worried I figured for a once a year event I could gut it out.  We arrived early and were able to park quite close.  The air was cold and full of pollution and I traveled only across a street and before I was huffing and puffing and it became apparent that my supplemental oxygen was not supplemental enough.  By the time I had traversed the half block to the Cathedral (I did have to rest twice and probably would have rested more had there been other spots to rest) my joints and nerves had begun their dance of pain.

A rector (one who likes me, the others do not know me, but there is no telling whether they would like me or not) seeing that I was in great distress whisked me in a side door so that I would not have to stand in line.  We then made our way to my pew (not really my pew, but the pew I was always like to sit at, it is in the back so I do not have to go that far) and I sat down and began to gather my wits back around me.

My wits did return to me, but resting in my favorite pew did not bring any relief to the nerves and joints felt a little better, but when I am not being Pollyanna the joints did not really recover much.  As time went on my lovely wife joined us my nerves had moved from the slow waltz of pain to more of the Mike Flatly Lord of the Dance dance kind of pain.  In true Dude fashion I told my nerves that this aggression would not stand, especially on Christmas (it really ties the year together, not like Easter but it does tie the year together).

About twenty minutes into the Mass it felt as though my feet were being boiled like cheap hot dogs and that was punctuated with the feeling of hat pins being run through my legs at various points, maybe more accurately hat pins attached to jack hammers because I would feel the stab and then before I could catch my breath from gasping at the first stab I would be stabbed again.  There were invisible knives inserted into my ankles and my knees and my hips.  Which does not feel good, but then it felt like some invisible being was beating my joints with an invisible ball peen hammer.  At this point I was moving around a lot, my wife has informed me that most people would call it "writhing in pain", my wife is fancy.

I leaned over and told my wife that I was not going to make it through the service and we gathered my oxygen tank and a purse and such and embarked towards the exit.  I did not realize that this was to require a Herculean effort on par with the travels of Marco Polo down the silk road.  First, let me say that walking with a cane or walker and with oxygen has spoiled me.  In a crowd of people they will part like the Red Sea when Moses is coming to let the disabled folk through, but that was not the case at the Cathedral (I am not sure if it is ironic or not that people would not part like the Red Sea at a Cathedral but I think it is).

The Cathedral was packed, but there was room to part, but nobody would at least until I physically touched them on the shoulder and said excuse me.  Now that sounds normal until I mention one detail, everyone was facing me, they could see me coming but would not move.  I am not sure what I think about that, but it is not the thrust of this post so I will let that sleeping dog lie or I will not beat that dead horse or something else like that.

I came to the Roman Catholic faith for many reasons, chief among those reasons was their understanding of suffering.  I knew it would not be easy and I knew there would be moments of doubt, but I guess I did not know "know" it.  I was disappointed that I was not able to become free through embracing the pain, that is me paraphrasing a quote from the Blessed Chiara Luce Badano, but on further contemplation I am disappointed that I was disappointed.  Looking back over the time I have been ill, I was disappointed the disease did not go away on its own, I was disappointed that none of the drugs worked to treat the symptoms of the disease, I was disappointed I could no longer work, I was really disappointed when I could no longer drive.

The new year is soon upon us and this year my resolution is to accept with joy everything that each day brings.  Expectations of things "should" be has been the cause of disappoint and unhappiness for me.  On Christmas Eve, I had a sister that was willing to come give me a ride to the Cathedral and I have a wife that has stuck with me in spite of my illness and shows me kindness greater than I deserve.  I have a rector that likes me a beautiful cathedral to attend and many in the congregation that know and care about me and make me feel the community of the Church.  I am a rich man and everyday I will do what I can and let God take the rest.

Loves to all and a happy new year!

PS

I have been trying to learn this lesson for a long time so....but I have faith....







Tuesday, December 23, 2014

Happy Early Merry Christmas (Catholicism, Conversion, and Death: not necessarily in that order)

Peace on earth and goodwill to men.

I grew up during the cold war, that is the global backdrop of my childhood.  I have also eluded that the local backdrop of my childhood (i.e. family, friends, strangers, & church folk) was not...well it is the Christmas season and I am feeling charitable so I will just say it was not what you would see in Norman Rockwell painting.  I never felt safe as a child.

Full Disclosure: I have not felt safe until I started my conversion to Catholicism.

The world today is full of shooting wars as opposed to a cold war.  There is a lot of overt hate and intolerance, I say overt because I am sure people hated each other when I was a kid but you certainly did not see it manifest in such public and violent ways  People are vocal about their intolerance of "others" cultural, religious, and racial differences in a way that is alarming.

I look at today and I look back at yesterday of my childhood and put them side by side for comparison.  I put my objective eyes on and I believe there was less to fear when I was a child than there is to fear now, I mean overall...not like specific threats...that is like a whole another book, not even a blog post, like a book. so not specific just overall things are scarier now.

That being said I am coming back around and yes it is happening: this is a religious post, not a post with religious content, I have had those before, this is an outright, show it in the sunshine religious post. 

Nobody knows when their ticket ticket to ride is going to get punched, when the last train to Clarksville is, when we are going to get lifted up where we belong (miss you Joe Cocker), when we all out of love, when we need to walk that way, when we will become a dancing queen, when we are headed to the dirt, when the rain comes again, when the static from channel z ends, when we will get eaten by the werewolves of London, when Diana Ross leaves us to not hang on anymore, when U2 finds what they are looking for, when Luka from the second floor moves out completely, when Semisonic tells us that it is closing time, when you find where your mind went, when PJ Harvey sings that she is rid of you and knows it is for good, when the cowboys from hell kick your ass one last time, when all Patsy Cline has left is sweet dreams of you, when it is time to put down the pretty machine for the last time, when Sister Christian has to go motoring by herself, when you find out what the lead singer of Morphine found out (the only cure for pain is death), take that final crazy train and find out where it leads, you head like bat out of hell for your final reward, and finally you are no longer a subterranean homesick alien.

Just to be clear nobody knows when they are going to die.

Few people in the world live like they are dying and we are all dying just at different speeds and definitely some deaths are more easily predicted than others.  I am certainly no exception to this rule and even after my diagnosis of sarcoidosis I did not live any differently but after a couple of years of being sick....it was oh shit I am going to die and possibly sooner than even the little dark man in the back of my head had thought.

When that realization finally sunk in I started to live like every day was precious and I wanted to be the person I had always wanted to be and I wanted to do the things I always wanted to do.  The irony (and not in that Alanis Morissette bullshit kind of way) is that by the time I realized the gift and beauty that is a day of life I was no longer able to do all the things I had wanted to do but wait it gets even more ironic.

Not to be deterred I set off on the list of things I always wanted to and I did my best to do the things I could.  The first thing I wanted to do was not be an asshole to everyone and if you are someone in my day to day life you know that some days I am better at this than others.  Second (this should have been first but I am only human) I wanted to be Catholic.

Generally speaking the program you go through to convert to Catholicism as an adult takes a year and usually all the adults converting complete the program and are baptized at Easter and Easter is coming soon.

Before I get into the religious finale I just wanted to say you should live each day like you are dying, kiss your wife, your mother, your father, your sisters, your brothers, your friends (maybe only kiss your friends that are Europeans) and tell them you love them (if applicable) and if you do love them act like it and spend those days with them enjoying their company, life is shorter than you think and it is much too short not enjoy each precious day as much as you are able and don't be petty (I am still working on this one) but really whether you are religious or not there are only a few days spent on this earth and everyone should live like it (in a good way).

In the past nine months that I have been actively converting to the Catholicism, I have been reading books, going to a weekly class and of course weekly Mass and what has got me you may ask?  Peace, in a word peace.  I am not Pollyanna and everyday is not filled with joy and I have trouble embracing pain like the saints but instead of dark little man in the back of my mind there is light and that is light from God and is something I lean on.  I know that does not make sense and I will not try and explain it.  It is transcendent and I feel like a kid on Christmas eve waiting to open presents and the anticipation is building until Easter and my baptism.

PS

I am also less of an asshole, not completely not an asshole I am still working on it but much less of an asshole.

PPS

The non-spiritual support I get from the clergy and members of my parish is indispensable and now I am part of a community, it is a community of believers and it may be the first time I have ever been part of a community (in a good way).  We also laugh and joke about non-Catholic things and I have made friends and trust me when you are sick having friends that are not freaked out by your potential death (at least freaked out less because they all know where I am headed (knock on wood)) and being in a social group again is really awesome (sorry I could not come up with anything better than awesome).

PPPS

I know I have had a lot of run on sentences and I have abused conjunctions and I ask for your forgiveness.


Tuesday, December 16, 2014

Did Conan Really Know What is Best In Life? (There Will Be No Discussions Of Cats)

Picture if you will in the theater of your mind Arnold Schwarzenegger in his seminal movie role as Conan The Barbarian, that is if you are too lazy to use Google and YouTube because the scene I am describing is on the Interwebs, but again if you are too lazy picture it in the theater of your mind...
Conan has been training to be a warrior for a while and he is sitting in the lotus position on a table where his teachers or trainers or masters or whatever they are eating and don't ask me why he is sitting in lotus position on a table where people are eating and a little side note Conan is not eating.  Recap real quick Conan is sitting in the Lotus position while his "masters" are eating around of him, some by his bum and some by his feet.  Another side note here that I did not direct this film or adapt the book into a screenplay and side note to a side note the books are good and I know it is a cliche but the books are much better than the movies.

Now that I have set the creepy Tableau one of the teachers asks the students in attendance and of course Conan is one of these, side note, none of the other students are sitting on the table in any position. The teacher or trainer or Sensei  or whoever the Hell this guy is asks the students 'What is best in life?" and the first guy is like it is my hunting hawk and the wind and snow and the next guy is like hot meal and a cold woman, at this point I have to admit I don't really remember exactly what the other students say but it is crap like that and then we get to Conan.

Conan says "To crush your enemies, to see them driven before you, and to hear the lamentation of their women."  When you are right, you are right and it is hard to argue against Conan's sound logic and the logic Conan uses here is sound.  It is a little Old Testament and I am more of a New Testament kind of guy, but I do not see any flaws in the logic.  I lived by this philosophy for part of my life but then I found Jesus and then I got sick and well... 

Well, today I am not really in a position to crush my enemies, see them driven before me or to hear the lamentation of their women because if I have any enemies left they do not have any women to lament them, on second thought if there are any enemies left they probably still live in their mother's basement and I am sure she would lament them being crushed but that does not change the fact I am not in a position to crush any enemies.  Since I am unable to follow the way of Conan and thereby follow the way of Crom, I must find a new philosophy for day to day living.

Side note:  I see that I did not use the correct tense at certain points above and I also switched tenses for no apparent reason at times.  For the record it is all past tense and by Crom, I am not spending the time to fix it

All sarcasm and exaggeration aside (at least for the most part) I do not miss the days of my youth, but I do miss Conan and building computers out of boxes (they did not work) and reading sci-fi books from the 50's recommended by my youngest uncle.  My uncle also taught me to play chess and backgammon and I appreciate that he never let me win.  People say youth is wasted on the young, I am sure it has been attributed to Mark Twain, but quotes can never be verified anymore without work, I would say that healthy is wasted on the healthy.

Computers made of boxes do not make me happy anymore and my deficit in problem solving and vanity make it much less likely that I will play games that require strategy like chess or backgammon.  Now before you get too far down the well and find that girl from The Ring I have found other things that bring me joy, maybe not that joy of a child but I find joy where I can.  I like blogging and I am even getting better at is as time goes on and  there is the company of my wife, which I do not truly appreciate until I became sick and there is Mass.

Once a week (twice if there is a Holy Day Of Obligation) I go to Mass at a beautiful cathedral and there are friendly parishioners who are glad to see me when I am there and miss me when I am not.  I was an atheist, a deist, an evangelical Christian and now I am on my way to being Roman Catholic and all I can say is I wish I had not required my own struck blind moment to make that leap of faith and I wish I could tell you it is all rainbows and unicorns as one of my friends is fond of saying but it isn't.

Everyone morning I say the following prayer:

O Jesus,
through the Immaculate Heart of Mary,
I offer You my prayers, works, joys
and sufferings of this day,
in union with the Holy Sacrifice of the
Mass throughout the world,
for all the intentions of your Sacred Heart,
in reparation for my sins
and for the intentions our Holy Father.

Some days the offering up of suffering goes better than others.


Tuesday, December 9, 2014

My Cat Keeps "Accidentally" Turning Off My Oxygen (Is It Personal?) (Life has value, God, Natural Selection?)

I have a cat.  I think the cat likes me, I think.  We have only known each other for a few months but I think we are developing a relationship.  My cat likes to crawl and climb.  She climbs on furniture as you would expect but on two different occasions she has turned off my oxygen while I was sleeping.  I am not sure how long it takes but I wake up gasping for air and I look over and she is standing on top of the machine with a look that says "Did I do that?" just like Steve Urkel.

When I watched Family Matters I always wondered whether Steve Urkel was a buffoon or was he chaos hiding in plain sight?  I have never been able to answer question then or now, but now I am living my own sitcom, I am Karl and my cat is Steve Urkel.  As I live this sitcom I wonder was the fictional world of Family Matters just a sitcom or was it based on the long lost comedic tragedy rumored to have been written by Sophocles?

I have a lot of thoughts concerning Alf in relation to the cat but I am not sure how it ties in but I do love the eighties classic TV vibe that I have wandered into.  There is the obvious tie in that Alf always wanted to eat cats but even if my cat is turning off my oxygen intentionally I do not think I would want to eat her, well probably not.


You will notice that there were two spaces between the last paragraph and this one, you know what that means?  This is going to be a little less funny and more related to being ill, you know that whole sarcoidosis thing.

It is terrifying to wake up breathless.  Full disclosure I almost drowned when I was a child and when I wake up breathless...it brings me back.  Mortality has been on my mind since the sarcoidosis diagnosis and I have probably not thought about death this much since I was really into The Cure back in the 80's.  Over the past year I have been in the process of converting to Roman Catholicism and while that has not moved mortality from the front of my psyche it has turned off the flashing neon sign that was flashing the end is near.

That being said there is something primal about breathing and when you awake from slumber (did that sound like Poe?) from the lack of breathing your body screams and claws and scratches for life.  In our genetic design there is an imperative to stay alive and whether you are Roman Catholic and believe that God values all life and gave us this imperative or that it has evolved on it's own through natural selection without the aid of God they both say the same thing: life is valuable and God has a plan for you and your suffering or you should try and pass on your genetic code, people give short shrift to natural selection, it took a lot of evolution to get to you or me.

Tuesday, December 2, 2014

Thanksgiving, I was only haunted by my dad for a minute

My wife and I have returned from our Thanksgiving at the Zermatt resort.  My wife was a little uncomfortable with people serving her as she had never stayed at a "fancier" hotel before but by the second day she was good, had the whole handshake money in the hand tip.  It was fun having room service and food from Frisch (local vegan restaurant, my wife is vegan) for Thanksgiving dinner.

The room was huge and had a fireplace, a balcony, a dinner table, a king size bed and a huge tub.  They have a spa in the Hotel and I had scheduled a day of spa activities for my wife for the Friday following Thanksgiving.  She reported back that it was good, not as good as some dedicated spas but good.  My wife and I are short on immediate family that are alive and local and it was nice to have a getaway.

My parents were divorced when I was six and somewhere along the way Thanksgiving became my dads holiday.  There were some dry turkeys for the first several years but along the way dad became quite the cooker of turkeys.  My sisters and I fought on most holidays and Thanksgiving was not an exception and my dad was not a peacemaker, I think he would best be described as a silence maker.  There were at least as many holidays that were filled with laughter and my father could fill a room with his laughter and illuminate any environment with his smile.

On this Thanksgiving after my wife had gone to sleep there was melancholy brought on by the absence of my father.  No tears were shed but my eyes did water.  It is better this year than the first year he was gone, well I am not sure better is the word, easier.  Easier is not the word either, I am thinking that is some combination between distant and less piercing, like I was stabbed with a spear but it has been withdrawn and it only stabs me again on Thanksgiving or when I reach for the phone to call him but most of the time the spear is withdrawn, most of the time.

PS (Health Note)

The resort was 1200 feet above our casa and I will tell you what, it was rough the first day.  I didn't really put it together that the altitude was responsible for my discomfort until the next day when I had begun to acclimate to the altitude.  I swelled up like that guy from Big Trouble In Little China who explodes at the end of the movie and once the swelling had gone down the next day it was pretty apparent that it was probably a little bit of the old congestive heart failure.

Now what is the sarcoidosis take away health tip from this little jaunt up the mountain?  Do not ignore your body, if you feel like you can't get comfortable and which ever way you lay you feel like your chest is being compressed and you can't breathe, well you might be dying and in more of an immediate kind of way than the existentialist we all are dying kind of way.  Loves to all and sarcoidosis hopefully just for me!

Thursday, November 13, 2014

Today I Do Not Smell (Bad)

I promised a whole post about faith and saints and religion and my experience with the aforementioned.  That post is being written but I am finding that I am less than forth coming about those topics.  Trying to put words to the unwordable is hard and I have a self imposed stigma that surrounds my faith.

Anywho...

That being said, today I do not smell bad.  I took a shower, I brushed my teeth, I did fall short and forgo the beard oil but I did put on deodorant.  The last couple of weeks have been rough.  I have spent a lot of time smelling bad.  I spend a lot of time sitting and marshaling my physical and mental faculties so that I can leave the bed and arrive at the chair with the laptop so I can communicate with you all.  Do not worry no guilt trip, I communicate for all the wrong selfish reasons.

Today was a perfect storm (almost perfect) and I am writing and all I can smell is the gentle odor of sport fresh deodorant and an occasional cat fart.  As Ice Cube so brilliantly put it today was a good day, I mean today is a good day but then I wouldn't be quoting the song so I mean you know what I was going for there so I am just going to leave it and move on, now.

In a non-flippant way I would some how like to share what the tough times are like and how I make it through and go on with a smile.  The past four or five years I have had a pretty good idea of the combination of things that have kept me going.  Faith in Jesus Christ and the Roman Catholic Church, my beautiful wife, my ugly friends and last but not least the kindness of strangers.  I am thinking the flippant started coming out there towards the end..maybe.

I never had a Glass Menagerie but I did have a plastic one.

Those things do get me through but the last weeks have been dark, darker than a Tim Burton movie, darker than Donnie Darko, darker than that part of the movie Legend after the Unicorn is killed.  I am coming out of the darkness (knock on wood) and it feels as though I made it through by reflexes left in my lizard brain from childhood.  In the acuteness of the moment all the things that keep me going fell away and I just survived because that is what I have always done and that is what I know.

Over the long haul I have the faith that all life is sacred but when  push came to shove I did not kill myself because of the lofty spires of my faith it was instead something deep and primal.  Everything about life is beautiful even the pain and all of it is a gift.  I have been thinking it would have been nice to have the receipt and no I am not taking the metaphor where you think I am, I do not want to return my life but I was thinking maybe I could exchange the pain parts for something else.

I am not sure what I would exchange the pain for.  The limits of humanity are such that after five years I am having a hard time remembering the nostalgia of the past and my imagination has found its limits as well and I am left with a thought.  Even if I could exchange the pain would it only be for store credit and what would I exchange it for?  Is there something else I would be interested in?  Can I order from the catalog and have it delivered to the store or I am limited to what is on hand?  Life is full of questions or I guess I should say my life is full of questions.

When I ask myself what is good today, I do have an answer to that question, I do not smell (bad).

Thursday, October 30, 2014

I do not know why the cage bird sings but I know why disabled people smell (sometimes like urine)

I have been around old people and they usually smell and not in a good Channel number five kind of way.  They smell like liniments and ointments (I am not sure what those are but I know they smell) and more modern things like Bengay and the scent from adult diapers.  Not all the smells are bad, like Werther's, who doesn't love the smell of hard candies?  The tie in to disability is coming and this will not become a rant about old people.  If you live long enough you will become disabled, so if you want to know what it is like to be disabled find an old person with a walker and they can tell you.  At least I think so, I have never talked to an old person with a walker, there is never enough hard candy.

I could end the blog post here with this insight, being disabled means you can't do what you want and you often smell and more often than not the smell is not good.

Of course that is not the end, I love the sound of my own voice clacking away at the keyboard, it is like a red red robin bob bob bobbin along, singing that old sweet song.

The first three years or so it was not easy to cope but I was able to cope.  My definition of coping was making it to work and staying at work for the full day.  During that three years I did not succeed at putting in a full day of work everyday but it was a passable performance.  It was rough and there were many mornings that hours were spent crying in the shower but I did it and there was a sense of accomplishment.  I always get a sense of accomplishment from a job well done or just a good day of work.

I think I am about to digress into a discussion of how I defined myself through work and that is for another time, I must bring my focus back to urine or at least the smell of urine.

As I live the fifth year sick and I have watched how the sick has progressed in an uneven fashion but definitely on a downward trajectory and on this day I admit I can not will myself through the sick.  The sick is now dense like the fog from that movie The Fog and not the crappy remake the original by John Carpenter with the lovely Adrienne Barbeau starring as a disc jockey that was a hold up in a lighthouse that had been converted to a radio station and transmitter.

Anywho my body no longer responds to my will on a reliable basis.  I am a practical man or more accurately being sick has flowed over me like a river carving the Grand Canyon and has whittled me down to a practical man and as such there are days when hard choices have to be made.  The unexpected by product of a deteriorating body is how easy some choices become.

One of the hard choices is you when wake up on Sunday morning for Mass and your body says with regrets you won't be attending.  In the past I have not taken no for an answer and it has sent me into a downward spiral where I end up being sicker longer than if I had just stayed home.

Just an FYI I ended up writing a whole other blog post about a young woman who I believe is going on to sainthood in the Roman Catholic church and what I am trying to learn from her example but it did not really fit in with this post but don't you all worry it will be coming soon.

Since I got side tracked I have kind of lost the flow but here I go again just like Whitesnake!  Other hard decisions are spend time with wife, friends and family, or take a shower.  I think you get the gist of what the hard decisions are.  What may not have been apparent to all is what the easy decisions are.  Here they come and they will tie this all together with a bow and bring it back to smelling bad.

If the choice is take a shower or go to Mass, that is easy I go to Mass.  If the choice is between being present with my wife (not in too much pain) and showering, that is easy I will be present for my wife.  I think everyone gets the gist of what the easy decisions are but I think everyone is saying "What about the urine?", well do not worry the urine is coming right up, no false advertising here.

If you have been around enough old people you have probably been greeted with the aroma of urine on more than one occasion.  I have some insight into this that I have not seen any else talk about on other blogs or websites, that is bladder control.  As you get older everything stops working well including the bladder but what does that mean in practical day to day living?

It means sometimes you rush to the bathroom to urinate and you don't quite make it and urine just sprays everywhere.  In the past I have received some feedback that my writing style may be a too raw and that might be a fair criticism of what is coming next.  I am a man with a lot of hair, hair covers my entire body except the top of my head (I am bald, like a soprano) and when urine sprays everywhere the Brillo pad that is my exoskeleton of hair gets wet and just to be specific, it is wet with urine.  Now here is where the easy choice comes in, you can clean yourself up in one of two ways; you can do a superficial job and probably catch a little waft of urine sometime later or you can do a thorough job and be out of commission for a couple of days.

For a long time I would be out of commission for a couple of days but now I think to myself, self what does a waft of urine smell really mean in the grand scheme of things and you know what the answer is not much.


Above is the end of my blog post but I thought I should mention that I am losing control of my bladder from nerve damage and in a non glib way I can tell you, some days I have no choice but to ask my wife to superficially clean my urine and let me tell you something, that sucks on all kinds of levels, enough levels there might be another blog post about urine but I am thinking not.

Tuesday, October 21, 2014

Cat Scratch Fever (Week Four The Quickening!)

It is the beginning of the fourth week of my journey with cat scratch fever, it is the best of time and the worst of times.  Many of you may recognize that quote from Highlander Two The Quickening.  I think the screen writer of Highlander Two is often maligned and unfairly so.  Okay that quote is actually form a Tale of Two Cities but I am thinking that in this day and age that Highlander Two would be less obscure than a Tale of Two Cities.

As I look over the previous paragraph I think some readers might think I am a pedantic asshole.  I think that impression is coming through because I am a pedantic asshole, at least some of the time.  Another truth that most be told in the second paragraph is week four of cat scratch fever is not really like the quickening at all, the movie or the individual event when our Highlander buddy separates some heads if you know what I mean.

Paragraph three begins with another truth, it sucks to be sick and it sucks worse when you are already sick with a weird, rare chronic disease, you know like sarcoidosis.  Today I slept sixteen hours.  When you are down to eight hours of waking time you start to feel like taking a shit is not a good use of your time and maybe I should get a colostomy bag.  I try to use what is left of my rationale brain to analyze this and realize the stupidity of the idea but for a short time it seems like a good and that all would be right with the world.

Just for the record I think paragraph three was gratuitous and since I am counting paragraphs is this one sentence that I have interjected to be counted as a paragraph?  It was meant to be an aside, like breaking the fourth wall during a play with one quick comment but now some how it has become a paragraph.  These are strange times and there is more in Heaven and Earth than is thought of by your philosophy/science, this is of course a beautiful quote from the bard Jackie Gleason.

To the moon Alice, to the moon...I often wonder whether Alice ever made it to the moon and if she did would she mind if I joined her?  Sometimes I dream of shooting a bullet at the moon but the bullet is so large it can hold me and maybe some books or some futuristic solar powered Kindle.  I would like Alice to keep my mind sharp and distracted from my illness with her sass.  Not enough sass left in the world, that is of course why I think of the moon.

I think this post has become a proof of concept as to my ability to write an absurdest play, that is where the money is these days.  I have tried to model my life after The Bald Soprano as opposed to The Caretaker or Waiting For Godot but despite my efforts it may turn into a Gleasonian Tragedy.  I had a thought just now, how obscure are the references I have made?  I would appreciate feedback except from relatives who know everything so there would be no point for them to chime in, get the hint?

Last paragraph, serious stuff bringing it home in act three or maybe act five?  No one knows how long their time on this earth is and to that end try to take a step back and look at the absurdity that life can be.  My first reaction is to wallow and I think everyone's first reaction would be to wallow, even the sociopaths, it is hard not to wallow.  I would like to make a 1984 reference here but some kind of Animal Farm reference would be much more fitting considering all the wallowing talk but alas it eludes me so be sure to insert your own.

Really the last paragraph, I am going to repeat my thesis statement, being sick sucks.  We are all put on this earth to die and since I have been moderately to seriously ill for the past four, almost five years, I am aware of that.  I have been much closer to death than I am right now and those times I was close to death I entered a Zen state that I did not know I was capable of but this time if I did die it would be from Cat Scratch Fever and that is really harshing my Zen.

Life is absurd, do not forget to smell the fart that has been farted in your general direction before you decide to run, you never know if that fart is going to be your bag.

Thursday, October 9, 2014

Cat Scratch Fever it is not just for Ted Nugent anymore

My last blog post detailed my travails of what I thought was the flu, it turns out that was not the case.  After a week of still being under the weather and also noticing I had a leg that was red, hot to the touch and swollen I thought it might be time to go see an MD.

The MD looked at the leg and asked if those where cat scratches on my leg, the answer was yes, I have a new cat friend that is a little high strung.  Our new cat is going crazy much less than when she first came to our home but she still goes a little nuts every now and again.  She does not attack anyone she just decides that something has happened and she needs to run full speed from the room using her claws for her traction and if you happen to be in the way, well she will use her claws on your flesh to increase her traction and speed while running.

The point it my cat is high strung but a loving lap sitting kitty and the reason my MD was asking about it is because Cat Scratch Fever is a real thing and not just a song.  In this modern age with all the science we have it is now called Cat Scratch Disease.  That is because they have discovered it is caused by a bacteria that 40% of cats carry and that for most people that who contract Cat Scratch Disease it amounts to a little redness and irritation around the cat scratch.

I on the other hand take drugs to suppress my immune system and hence the increase likelihood of full blown Cat Scratch Fever, so unlike most of my blog posts this one has concrete information that could help someone.  If you are on immunosuppressants be careful around cats, there is more danger than you know, similar to the Rabbit from Monty Python's Holy Grail.  Be careful you all.

Friday, October 3, 2014

Early Morning Flu or When is it time to go to the Hospital? I don't know but my wife probably does!


Late Sunday night or early Monday morning, at this point that is not clear to me because the events of that night are shrouded in mystery, it was the fog of flu (as opposed to the fog of war) and the only thing that was clear was that I was a victim of the flu. By 4:00 am I knew the war of the flu was going to be serious.

I was not sure how long the war of the flu would last and this was my only solace.

That previous statement on hindsight seems to be a little to hyperbolic even for me.  First there is my Lord and Savior Jesus Christ and the Roman Catholic Church.  It comes up every now and then but on a serious note my conversion process to the Roman Catholic church has been trans-formative in a positive way.  The insight that I have gained from my Deacon (I don't own him but you know what I mean he is mine) and the Saints (not the football team, I like the Bronocs regardless of names) and contemporary Priests and Bishops have had prescient insight about suffering and the good that comes from it (even if I can not see it).

Second my wife has saved my life on a daily basis since I married her, sometimes literally, sometimes emotionally, and definitely spiritually.


On the that Monday morning I had all those things and my outlook was dark, especially when I closed my eyes so I did not have to look at my projectile vomit. 

Side Note: My wife is wonderful that is all (not really but really) 

Let the narrative of the flu continue!  Somewhere on that Monday morning I was no longer able to get out of bed and I mean literally could not get out of bed and I am talking the old school definition of literally when it used to mean literally.  At another point that morning I lost the ability to form coherent sentences, I am probably not indicating the severity of the issue, I lost the ability to communicate.  From a layman's perspective I think I appeared like I was the victim of a stroke.  I wish I was saying that lightly, it must have been terrifying for my wife.

The incoherent moments would come and go, well sort of I guess it would be more accurate to say I was less incoherent at certain times than others and during these times I would say no every time my wife would ask if we should go to the hospital I would say no and shake my head.  There is some history there that will not be fleshed out here but I will get to sometime in the future or I won't one of the two but the point I am making is do not hold it against my wife, it is all on me.

My eyesight started to fade away to white like when you would turn the contrast knob on an old TV, I did not mention this to my wife.  I am not sure if it was I did not want to tell her or I was unable to tell her, looking back I was in bad shape and I should have gone to the hospital.   I have had a couple of other incidents when I was alone that I was much closer to death than I was Monday morning and I usually use the fact I am alive as an argument for why I did not need to go to the hospital, today I will not make that argument.

It is hard to argue against going to the hospital in the future when this time I was incapable of making a conscious rational decision based on the facts, my condition at the time precluded it.  My wife did not have a way to know this and it is unfair to put her in the position that my judgement should always override hers.  If anything she is probably more capable on a day to day basis of making decisions for me because she gets a more objective view of the situation.  It is a good thing I am getting baptized soon.

As Monday wore on my wife took care of me and watched me like a hawk as my breathing deteriorated and my fever went up and the vertigo kicked in and it seemed as though every inch of muscle and bone had been personally punched by those guys from The Fantastic Voyage, not to mention vomiting and too weak to get out of bed were still in the picture.  Through all that she was a rock.

What did the Flu (at least that is what I hope it was) from this week teach me?  My wife is awesome, she is so awesome that awesome is not an awesome enough word to describe her.  Also I learned it is unfair to through necessity force my wife to make more and more decisions (she has stepped up and been brilliant) and then cut her out of any input on whether I should go to the hospital or not.  If you are in a similar situation I hope you can have an honest conversation with your spouse about those decisions, I do not know how many spouses would feel better taking on a more active role or worse, I can see it both ways.

In my case it turns out I have been selfish and the selfishness has been de facto punitive action against my wife.  There are so few things that are really within my control (shhhh don't tell me there are actually no things within my control) why would I want to even unintentionally punish my wife?  The answer is I wouldn't in case anyone was wondering, I was going to leave that unanswered and end there but then I thought somebody will remember when I was not particularly nice in the past and be like I can see him intentionally punishing his wife he was kind of jerk.




Thursday, September 25, 2014

I can not see clearly out of my right eye but I can see clearly now the rain is gone

I can't see clearly out of my right eye, it happens or I should say that it has happened before. I am not a doctor but I play one in my head so I will go ahead and give you a self diagnosis, uveitis. Now you may be asking yourself how did I get in this great big house but you are probably wondering what uveitis is and I hate to disappoint, uveitis is the inflammation of the part of your eye that gives it color. Now you can Google that shit if you want to get in depth but for the sake of the words I am laying down that definition is sufficient.

Uveitis left untreated can cause blindness and shhhh don't tell anyone this next part, sometimes if you have some rare shitty manifestation of a rare disease it can cause blindness with treatment. Anywho it is really annoying as I try and write this because I do not have an eye patch or the ganas to make an eye patch so if I want to see the screen clearly I have to close my right eye. Now I know before you get up in my grill with these are first world problems, yes I understand that I would probably be dead if I lived in a third world country or during a zombie apocalypse but that does not change the suckiness of it.

You may have noticed that the first two paragraphs are written in my usual style, I would call it caustic but most would call it bitching and moaning but wait for it.... even with one eye closed things seem clear to me. Things are clearer than they have been since I was first diagnosed with sarcoidosis. I am in the process of converting to Catholicism (Roman) and I attend a class each Sunday after Mass. The class is taught by a Deacon from my local Parrish and on the way from Mass to class I mentioned to the Deacon that I was feeling separate from God, not that I had lost faith but I was feeling separate, that there was a space between God and myself that was not their before.

I also mentioned that coming up on five years of being ill (and not in a good 90's kind of way) that it was wearing me down and that I was concerned my suffering was serving no purpose. In Catholicism you can offer you suffering up with suffering of Christ, there is a larger explanation that you can go Google for yourself because as usual I am to lazy to Google it myself and provide a link. I asked the Deacon if he had any reading recommendations and he suggested the book A Rise From Darkness by Father Benedict Groeschel.

Once I got home I set about ordering the ebook, there was one small problem, I could not remember the name of the book.  I remembered the name of the author and that he had written it after he had been hit by a car and I came up with a book entitled There Are No Accidents.  I read the book in a day.  The reason the speed I read the book is significant is I have been unable to read more than a couple of paragraphs.  What usually happens is I get one or two paragraphs in and then I can not remember what I have read and I have to start over, also the reading is slow going.  I usually have a hard time putting the words together into sentences so they make sense in my head.

I think that last paragraph may have been belaboring the point but you get the idea of how things were.  Before I was sick reading was a joy in my life and to be able to read and a book, any book, was wonderful.  I look back over what I have written and it seems like a three year old trying to articulate his thoughts.  I want to say it was a window out from the grey institution of being sick to look out on a world of color that I think I remember but I am not sure was ever real but here it is plain in front of me.

I don't want to throw around the word miracle and I wont in this case but the joy of reading again was a gift.  Then there is the content of the book.  There are two parts to the book, first an interview with the author before the accident and then his thoughts why he was in the hospital recovering from the accident.  I found the words of this humble Priest that had preached about suffering so often and now was faced with practicing what he had preached.  He did not fall short and his words opened another window for me, it was a spiritual window.  I have no words for this window but I will say I no longer feel separate from God and I can see clearly now the rain has gone.


Wednesday, September 17, 2014

My Cat Likes Live Prey

So a moth came into the house tonight, my cat began playing cat and moth with said moth.  I know I may get some mockery for this but after encouraging the cat to kill the moth I could not let her toy with it forever so I picked up my cat so my wife could get the moth and either put it outside or well you know.  I immediately realized the cat takes live prey much more seriously than say a cat dancer or a laser dot.  The cat began to convulse like she was undergoing electroshock therapy.  During the convulsions there was some damage done but I was able to put her into a bedroom and shut the door.

I then took care of the moth situation, unfortunately it was a job for the Wolf. 

I then took inventory of my injuries.  The forearms where bloodied as you would expect and even a pretty good gash on one thumb but as time continued to spit out ticks I began to notice a warm feeling around my left nipple.  Then the nipple began to burn as I began to take inventory of the nipple I noticed four claw marks starting right below my collar bone and ending under my nipple.  Upon closer examination I noticed that all four wounds were bleeding and my nipple was partially detached.  I think a lesser man might have gone to the urgent care.

The morale of this tale?  Don't get between a predator and live prey? YOLO?

Thursday, September 11, 2014

My New Diagnosis To Correct My Wrong Diagnosis Was Also A Wrong Diagnosis

I have not been regular the past month.  While that statement does apply to posting on a weekly basis it unfortunately applies to much more.  There is of course the obvious joke and while I am no longer shitting on schedule but that is just the beginning. In the many pains (intentional misspelling of pane) of stain glass that make up the window that is me the lack of regular shitting is in the lower left corner hidden by a column from most angles.  The pains (panes, huh wink?) are varied and some are jagged and are not found a place.

The main reason that I have not posted as often as I would like is simple, I have felt poorly.  All over, the kind of pain that lies on you like uneven chain mail that has been hit with too many maces.  A lot of the pain was taken on by choice.  The choice was not well informed but it was a choice I made none the less.  I went to see a new rheumatologist and she had a theory that I had inactive sarcoidosis and undiagnosed active fibromyalgia.

I thought the new rhumie was wrong.  There are not a lot of people that are up to speed on sarcoidosis and I expect since the TV show House has ended that there will be even fewer people that know anything about sarcoidosis going forward.  The reason this has importance is chronic and refractory sarcoidosis can cause small fiber neuropathy which has a lot of cross over with fibromyalgia when it comes to symptoms.  In the sarcoidosis rare disease online meet up group there are many anecdotal experiences that have shown that doctors that are unfamiliar with sarcoidosis and have seen a lot of Lyrica ads think everyone presenting with those symptoms has fibromyalgia.

This post is going to drag on and be about sarcoidosis and here we go.  There are no tests that can tell the difference between fibromyalgia and small fiber neuropathy, there are things that can definitely cause the scale to lean in one direction or the other but nothing definitive.  One of those things is if you have a positive EMG (if you want to know about an EMG Google it because I am to lazy to link to the Wikipedia article, better than that go to YouTube and be warned there are two inch needles being inserted into extremities and then electricity is run through the needles) so back to it if you have a positive EMG it almost always means it is not fibromyalgia.  Now I have a positive EMG and communicated that to my doctor.  She did not mention to me that she did not know much about sarcoidosis and I was also unaware that if you have a positive EMG it excludes fibromyalgia.

If I had known these things I probably would have avoided the next three months of serious unpleasantness.

As I think about I wonder if the new rhumie thought that I was mistaken about my EMG results or did she think I was lying about them?  I will give her the benefit of the doubt and say she thought I was mistaken.  Anywho I started to taper off my sarcoidosis medications and started to taper up on a drug for fibromyalgia.  I was under the impression that if I got better or stayed the same I had fibromyalgia and if I had bad trip so to speak it meant I had sarcoidosis. This was a three month process and at the end of month one I was in bad shape, by the end of month two I was in worse shape, by month two and a half...

Well by two and a half months the darkness started swirling up around me, it is like that ice palace from the movie Frozen if it had been done for the cover of a Black Metal album.  Things start to get bleak when you can not remember the last time you had a moment of comfort.  It has been years since I have had a moment without pain. These days I just aim a little lower and shoot for moments of comfort.  Of course this only relates to the physical but to my chagrin the physical seems to have a lot to do with the mental and emotional.

I can't remember what I have documented over the last few months and I do not feel like going back and reading my own posts, it is like hearing a recording of your own voice.  Over the past year or so I have had several situations that generally would be considered stressful and all though I can not say there is a definitive causal relationship between stress and my sarcoidosis flaring but I can say without a doubt there is a correlation.  This rubs me the wrong way, I hate that my mind can effect my body.  I will be honest I am not sure why I hate that but down to my core I can feel the hate.

I am surprised that I have viscera but I can tell that I have viscera because that is where the hate is for stress effecting me is located, right next to where I keep my methane.  I will explore in the future why I hate this stress thing, I do not know if I will find an answer, when I say I will explore in the future it usually means I know but I am tired of writing but this time I do not know.  

Thursday, August 28, 2014

The Streak Has Been Broken (A World Of Hurt)

The past couple of months have been rough.  It has been physically, emotionally but not spiritually difficult.  In a reflection of that difficulty this post will be short but it will be posted.  I am feeling guilt for not having kept my streak of a post every week alive.  I hope to delve into that in a future post but I am not sure I will live long enough to have the necessary psychotherapy to extract or get to the bottom of the deep black well of guilt that lies at the center of my soul.

Three months ago I started seeing a new rheumatologist.  A smart, funny and caring doctor and that is a rare thing.  I can hear the gears turning out there and I know my audience is thinking this sounds promising how is he going to bitch about this?  Here we go, there was a problem.  She does not think that my list of complaints is caused by sarcoidosis.  She thinks that I have fibromyalgia that is untreated combined with side effects from the drugs I am taking for sarcoidosis.

Besides the new rheumatologist I see four other doctors of various specialities on a regular basis.  None of these four doctors think she is correct.  I personally do not think she is correct.  This is relevant because the new rhumie wanted me to ween me off of all my sarcoidosis drugs with a few exceptions and start a drug for  fibromyalgia.  Now although I think the new rhumie is wrong I think she is intelligent, caring, thoughtful and just keep adding positive adjectives so I agreed to stop the sarc drugs and start the fibro drugs.

That was three months ago and I am now off the sarc drugs and taking the fibromyalgia drugs.  Soooo a few things have become apparent, if I have fibromyalgia these drugs are not working at all and I may not have sarcoidosis but the drugs I was taking for sarcoidosis did do something.  I mean when I was on the sarc drugs I felt completely awful and I was about to say read previous blog posts but I am really not sure what I have mentioned in the past and what I have not.  Soooo again I will say I was in a sorry sad state when I was on the sarc drugs and now that I am off the sarc drugs I will say that I really long for the sorry sad state and if I get back to that I will savor it and enjoy it just a little more.


Tuesday, August 12, 2014

Your So Vain I Bet You Think This Blog Is About You, Don't You?

I thought about starting this blog off in what I think would have been a hilarious way, it would have gone like this:

Yes, that is the answer.  Yes every blog post I have ever written has been about you.

I stopped myself.  Most of my posts are just my feeling and thoughts at the time they are written and what I mean by that is I do not usually have specific intention when I write.  This time I have a specific intention so be forewarned I do not anticipate it being funny or poignant.

Three times that I know of someone has been deeply offended by what I have written about them.  Only once have my words been about the person that was offended.  Before I continue I should mention that I am guessing that this happens much more than I think and most people seethe and do not confront me, the thought of that makes me sad.  At this point in my life I would hope to not cause any unintended suffering. Alright back to the topic at hand.

The two people that I did not mean to offend thought that my words had implications that they did not.  I would like to say I never imply or use subtext when I communicate.  My mother was a master of implications and subtext, speaking with her was always a chess match and unfortunately my mother's genius exceeds my above average intelligence and she would win, at least most of the time.  I spent my childhood in a cloud of words and I never had any security or trust.  With that history in mind I have done my best not to never imply or use subtext, now of course I can not deny I am influenced by my subconscious and I can not say I never ever use them but I try, I try real hard.

I have brought my fair share of people to tears and for the sake of this I will leave out everyone I ever dated but my current wife but unfortunately that still leaves a long list of folks.  For most of my young adult life and "mature" adult life I have handled disputes by getting angry and telling people exactly what I think.  I thought this was the alternative to my mother's methods.  Getting sick and finally feeling overwhelmed to the point where I was willing to seek therapy and by getting that therapy I came to realize a few things.

First and foremost my logic hammer can not beat someone into seeing the truth.  People perceive reality through their minds and their minds often do not use logic.  To that end I am learning to take a breath and think will things be "better" after I have spoken.  Second and second most I have learned that when your only conflict resolution skill is angry yelling people think you are an asshole.  I have learned other things but those two are really important.

To all my faithful readers I guarantee this: I will not write a blog post about you that contains anything I have not said to your face, well probably to your digital face because I am homebound but you get the drift.  For all those who for whatever reason did not get the drift I say this, if you are not sure if a blog post is about you, it is not about you.  I am learning to take a breath.  I have not been a 100% at taking breaths, meaning I still have no filter and if I am mad at you or think you have done me wrong I will tell you to your face, probably loudly.



It has been a long couple of weeks

In our day to day lives the rate at which time flows is a constant and there are of course exceptions to this, the last half hour of a workday, the last five minutes of a school day, the first dinner with your girlfriend's parents, etc.

Things have been bad the last couple of weeks.  It is hard to describe what I am going through to someone who has not had the same experience.  A quick run down would be fatigue, pain, shortness of breath, lack of mobility, brain damage (various kinds that I do not feel like listing), my eyelashes are falling out, bleeding from random skin lesions, vertigo and then I will say my three favorite words, blah blah blah (there are a lot more things but I am tired of listing in general).  Any one of these items I could ignore or at worst I could probably tolerate them on a one on one basis.

Together they are greater than the some of their parts and it is not like you just add them together, it is exponential, in unknowable, like what happens when you approach the asymptote as you head towards infinity.  The experience becomes indescribable.  Most of the last two days were spent sleeping and sitting on the bed.  When I would sit on the bed I would think to myself I should move, if I could get to the shower and then to my chair I could be clean and then I could interact with people even if it is just through virtual means, but I still don't move and I am really not thinking.

I sit on the bed and I am surrounded by the oblivion that the chaos of my symptoms create.  Now that sentence was going to be the intro to something but man in my present state that seems like a really cool sentence, I am not saying it is a cool sentence I am just saying that in my present state it seems like a cool sentence.  That sentence was cool but it still lacks the ability to convey what it is like.  I glance over at the chest of drawers and these drawers are moving horizontally away from each other and I get sick to my stomach.  If it did not make me want to throw up it would be like a moving Escher drawing but it does make me sick and I still sit on the bed.

My sister came over a few days ago because I needed to sign some documents for my dad's estate.  I did get up from the bed but I skipped the shower, had my wife help me get dressed and I took my place on my sick throne.  She comes over and we are chit chatting and she tells me I do not look good and asks if it is pain?  It is hard to answer these questions but in the short answer if it was just pain I would still have a driver's license, I would still be working and I would still be doing some other more intimate things that I shant discuss here, well at least not in this post, if I really want to help people and have them relate to my experience a post on sex or the lack there of must be addressed at some point just not today.

Back to today's topic it is so hard to talk with someone that has no frame of reference.  I remember when I was first diagnosed I had symptoms but I powered through and I would go on to internet support groups and read posts from these people that lamented that they could no longer work and I would think to myself that they were weak and if they would just pick themselves up by their bootstraps and get moving they would be okay, I never thought they would be good but I thought they could be okay.  Fast forward four, geeze I think almost five years now from my diagnosis and I humbled and ashamed to think I blithely told them that studies have shown if you are just able to get up and exercise your symptoms would improve.  I ask forgiveness and realize now that I was just kicking people when they were down.

I have some great friends that come by and visit me and my spirits are always raised and smiles swim across my face from the love and companionship they bring when they visit.  The friends that I have know me and it is great to be known.  My family has never been close and we as a family have had it pretty rough and this goes out from my immediate family and includes aunts and uncles and cousins and such and I know that when some of my family comes over they look at me and think he should just pull himself up by his bootstraps and just get up and nothing I can say will make them understand and the only way they could understand is if they shared the experience.  My family and I are not close but that does not mean we do not care about each other and my parting thought is I hope my family never understands.



FOOTNOTE:  Well not really, what I am adding here is that my friends and I have trust and this flows from knowing each other well.  Family and I not so trusting and mainly because we do not know each other well..  It is hard when someone that you have not spoken to in years asks to trust them or even someone that you talk to once or twice a year, it is hard to trust them as well.



Tuesday, July 29, 2014

I Write The Blogs That Make The Whole World Sing

I wrote this blog a while ago but a visit from my cousin (this blog post is definitely not about them) has prompted me to post it.

I have written this blog once a week for nineteen months religiously or close enough for the girls I date. That line makes me nostalgic for the misogyny of my youth but I will try to keep the regressions to a minimum today. I did have other blogs but I did not attend to them with any regularity but this blog, this blog I have written a post every week for nineteen months, give or take a week here or there.  I am pretty sure I only missed one week but in case I was wrong I did not want to give some anal retentive reader something to be anal retentive about.

In the course of time it has gone from a blog that only about twenty of my "Facebook Friends" a week read to a blog that is now read by an average of sixty different people every week and out of the sixty only about ten of them come to the blog through Facebook.  I wont bore you with a further drill down of the readership of my blog other than to say sometimes I do get as many as one hundred unique visitors a week, my vanity is appeased.

What is the point of the first two paragraphs?  Wasn't I supposed to include a thesis somewhere in the beginning somewhere?  I don't know, I consider it a great leap forward for me that I now proofread my posts before publishing.  A point, maybe not the point, but a point is coming next.  I write this blog for personal catharsis and I hope that my catharsis can help someone going through a similar circumstance.  I have said that before but that is not originally why I started this blog.

I started this blog because my family has a problem with communication.  I would tell one relative my current status and just like the children's game telephone by the time I would hear it back from a different relative it would be distorted, sometimes it made me laugh and sometimes it made me cry.  I am hesitant to bring up the second reason but I have always been honest in this forum on if I start writing in regards to who might be offended this blog would go from a source of relief to a source of stress.

The second reason I started this blog was also because of my family.  My family can be passive aggressive, martyrish, and narcissistic and I don't mean that in a good way.  I will just come out and say it, sometimes my family can be assholes and I don't mean that in a good way either.  There is a lot of anger here and I am a little apprehensive about tapping in for fear of what might come out.

Let us just start with a few facts, hopefully I am sounding like a dickhead, that is what I am going for.  Fact one I am not sorry I did not call you personally to give you an account of the latest happenings, I only have so much energy and making sure some narcissist is satisfied that I told them and not someone else about my health travails or at a minimum told them first or at least the same day is often not possible.  In person and on the phone I have had family accuse me of being a liar.  They just can not accept that I did not have the energy to call them, how is it possible I did not have the energy to call them, it is possible and I would appreciate some empathy and understanding (I come by being an asshole legitimately, I come from a long line of assholes and some days I am surrounded by assholes).  What I get is an attack that my lack of calling and communication is a intentional slight and how could I attack them, how could I do that to them?

It did that because I do not care about, your fears are correct, I do not like and I have never liked you.  My entire illness is a fabrication in order to give me cover while I continue to slight you at every turn.  I hope this admission gives you some peace.  Sidenote: there might be some that would say this blog post is passive aggressive and why didn't I tell people directly?  In response all I can say is if you think this blog post is about you it is.

PS If you want to know how I am doing send me a message or call and stop being a dick.

Tuesday, July 22, 2014

Not A Passive Aggressive Letter To My Sister

This post is not passive aggressive, other than in the obvious way that I am posting on a blog instead of talking to someone in person.

This is to my sister (not the one in the hospital).  I told her that I was not going to write another blog post about her and at the time I said it I had no intention to do so.  I am going to switch it up here and write an open letter to my sister.

Sister when you were last at my house you brought up a blog post that I had mentioned you in.  It was from quite a while ago and was surprised that it affected you that it was still in forefront of your mind.  When I sat down this morning to write a few things that had been simmering since your arrival and departure into and from the city of salt, I wanted to communicate with you and it seemed obvious that it should be a blog post because it gets through to you.

My first impulse was to dissect every slight and wrong that I felt you had committed and get deep down into the semantics and have a really satisfying fight/argument with you in a public forum so neither of us can place a spin on the results.  I did indeed write two blog posts prior to this one that were angry and full of detail and then all of the sudden I wasn't angry anymore.

Dad is dead and mom and I are not far behind him.

I have to prioritize now and being angry with you is a waste of time for us both.

 I do not know you very well.  I am six years younger than you and was only twelve when you escaped our family.  That is how I think about you going away to college when you were eighteen and I am in no way implying that is how you feel but that is how I felt/feel.

As adults I would not claim to know you, that does not mean I do not love and care about you as my sister but we have not had a relationship as an adult.  From my perspective this is not an attack just a statement of fact.  I will not assign blame as to the who or why that is the case just that it is the case.

I love to exaggerate to tell a humorous story, I like to see people smile and feel like I am a positive part of their lives.  I do not exaggerate about my health, in many ways I am still in denial about how the illness has effected me and that being said when I talk about my health no matter how bleak I am sugar coating it for myself.  I do not know the a word that means the opposite of exaggerate but that would be what I do about my health.

We are not close, you do not share your secrets with me and I do not share my secrets with you and neither of us is going to live long enough for that to be the case but what could happen going forward is we set aside our preconceived notions and stop expecting each other to understand the meaning that is implied by the words we say, we do not know each other well enough for that.  Lets treat each other like the strangers we are, I am not angry twelve year old and you are not a awkward eighteen year old theater geek.  That is what we where the last time we were together for any amount of time, that was thirty years ago and I am thinking we both might have changed since then.

Tuesday, July 15, 2014

My girlfriend is not in a coma but my sister is in a psychiatric hospital

I have talked about my sister being in the hospital before but I have never come out and said it, my sister has a mental illness.  I have been aggressive in my stance that mental illness should be treated like any other illness and that there should be no stigma associated with it.  Funnily enough I have never mentioned that my sister has been not in a generic hospital but a psychiatric hospital.  I have gone into great detail about my illness in hopes of helping others but I would not mention that my sister has a mental illness, that would have helped others, maybe more than my regular ramblings.

When someone has a serious mental illness psychiatrists, especially psychiatrists at in patient hospital, want to treat that mental illness with drugs until the person is able to function "normally" on a day to day level.  They are not real concerned with quality of life.  I have experienced this same phenomenon with my own doctors, they see a serious physical illness and they want to treat the illness to make sure I stay alive for as long as possible and often regardless of my quality of life.

I know that when I bring up quality of life issues with my doctors we can have a conversation.  Some doctors are willing and engaged to converse about quality of life and some are not but they will at least have the conversation.  I do not know if that is the case for people with a mental illness.  Can someone with a mental illness say I would rather be crazy than deal with these side effects, can they say that their quality of life is so diminished that I need to try other therapies for their mental illness?  I have a feeling that those requests may be brushed aside because after all the person is mentally ill and can they really judge what their quality of life is?

My sister demonstrates a pattern among many people with a mental illness, she does not like to take her meds.  This happens with other diseases the most famous example I can think of is Steve Jobs rejecting the medication that was suggested for treatment of his cancer.  That being said it is more common in the realm of mental illness.  My sister has bipolar disorder and in order to treat her bipolar disorder successfully she needs to take some drugs that are heavy duty and have serious and unpleasant side effects and periodically my sister decides not to take those drugs.

I understand all of this on an abstract level but on the concrete level of day to day life I am angry.  All though I preach that mental illness should be treated the same as any other illness but I still think couldn't my sister choose to hold it together at least until my dads' estate was closed or Hell maybe until I die?  Stress takes a toll on my health in real tangible ways and doesn't my sister care about me enough to hold off on being crazy so I could have less stress?  I know these are all bullshit questions and my sister does not choose to be mentally ill but she does make a choice not to take her meds.

What weight should I give to my sister not choosing to take her meds?  When she is on her meds should she be held accountable for choosing to stop them?  Is she herself enough when she is medicated that I should be angry with her?  I do not know the answer to these questions, Hell for all I know these questions are all rhetorical and I am too stupid to realize it.

When my sister was in the psych hospital either last year or the year before I was talking to her on the phone and I was angry and I asked why wont you take your drugs, your choices impact people that care about you and I worry about you.  She told me I did not have to worry about her anymore, that she had relieved me of all responsibility.  Is it bad that sometimes I wish I could just not worry about her?

All I know is that my eyes are heavy, heavy even though I am taking pills to treat narcolepsy.  I am sad, I am worried, and I feel the weight of the situation.  I have not talked about it much in this forum but I have had a decline in my health over the last few weeks or maybe two months or so, it is hard for me to judge.  I can feel the stress take away energy, energy I probably never even had in the first place, energy that is probably just an illusion from my narcolepsy drugs and you know what?  It was a shitty illusion, I did not have much energy even in the illusion of the life I lead.

A friend of my sister and my other sister have handled the situation this time and I know it is out of kindness and concern for my health that I am kept out of the minute by minute play by play of her illness.  Silence gives you a lot of time to worry, I worry about my sister and I wish she was well.

Wednesday, July 9, 2014

Caregivers

Below is a link to an article written by a wife of a sick man.  I imagine my wife feels some if not all of what she is talking about and I hope everyone that reads this would remember that care taking is harder than being sick.

http://www.theglobeandmail.com/life/facts-and-arguments/caring-for-my-sick-husband-i-am-going-through-untold-suffering/article19163110/

Tuesday, July 8, 2014

Visit to the neurologist

I made an appointment with my neurologist with the specific intent of discussing my cognitive issues. I had been on an increased dose of prednisone for the month preceding my appointment with the neuro man. Non nuero symptoms of a various and sundry nature "necessitated" the increased dose.  Little things like trouble breathing, trouble walking, trouble standing (vertigo).  Prednisone needs no introduction so I shall just say this, it never helps that much but it helps some and that is more than any other drug I have tried.  I have mentioned it in other posts but I shall just say this, even though I already said I shall just say this and I am aware that I am now saying more than just this do not side track me and let me spit it out, prednisone is a harsh mistress and after a short time she will always turn on you.

I have blogged about that in the past and if you have a hankering for more in depth complaining about prednisone feel free to check out those older posts but really just trust me it is pretty gnarly and sometimes miraculous but mostly gnarly.

Anywho when I got to the appointment I was not firing on all cylinders but the engine was running on the starting fluid called prednisone and my cognitive impairment had improved. Wow I really like making car metaphors, I am thinking that I may go for a simile next.  Car similes sound really tasty.  Back to the story it is hard to measure and find the cause of cognitive issues when they are not happening so we started talking about pain and then fatigue and one thing lead to another...

I had already been taking Modafinil for my extreme fatigue upon the recommendation of a doctor that although she is not considered a sarcoidosis specialist from my experience I would say she is and if nothing else she is the closest thing we have in Utah.  Well anywho you can take 400 mg of Modafinil a day but from the studies that I and the sarcoidosis specialist were aware of indicated there was no benefit in taking more than 200 mg a day.  Boom goes the dynamite the neurologist is like yeah there is no benefit in taking 400 mg all at once but there has been studies that show if you take 200 mg in the morning and then 100 mg in the afternoon it can give you a little extra boost and hopefully increase that elusive quality of life.

Is there a moral to this rambling tale of drugs and sickness?  Not really, well maybe a little bit.  First the extra 100 mg in the afternoon has helped, not like I had hoped but it did help.

Sidenote:  I think I am going to stop hoping and go full zen and just let it be.

Sidenote to the Sidenote:  No drug I have taken has worked like I have hoped, another reason to go full zen.

I was going to cancel my appointment with the nuero man since I was not having severe symptoms but there were several positives that came from the visit.  Quality of life, it did improve, not a whole lot but at this juncture every little bit helps and he also laid some knowledge on me.  Some of the knowledge I enjoyed learning and some made me sad, it is hard when your body betrays you.

The neurologist helped with the fatigue and he also stuck me with needles in my feetsees to see if I could feel it.  I was disappointing to hear him say that he had stop because he was going to break the skin, thus indicating I had no sensation in my feet.  He then moved my big toe on each foot up and down and asked if I could tell whether it was going up or down.  I apparently have also lost a great deal of my ability to tell what position my toes are in.

My initial thought was why do I care about toe position?  Apparently your brain uses the information from your toes to help keep you upright.  This combined with the damage to the nerve that carries information from my ear to my brain causing vertigo and together it is difficult to stand and not fall over and then add the fact that I can not tell where my toes are it is amazing I don't fall down even more than I do.  What is the positive from all that?  I learned the word ataxia, well not that positive because I have it but I do like new words.

In the end never give up hope but never be too hopeful.?!

Friday, July 4, 2014

On the fourth of July lets remember that this is the United States of America so stop being an intolerant bigot

On this the 4th of July I would like to quote from a letter George Washington wrote to his agent in regards to hiring men for Mount Vernon  "If they be good workmen, they may be from Asia, Africa, or Europe; they may be Mohammedans [Muslims], Jews, or Christians of any sect, or they may be Atheists."  What is my point in saying this today?  This is United States of America and we should hold to the ideals it was founded on.  In other words be tolerant of other peoples and their beliefs or in other other words stop being an intolerant bigot this is America after all.

Happy Holiday

Tuesday, July 1, 2014

Waiting for Miracles is Hard Work

Last Saturday I went to mass at my local Cathedral and as is usually the case my wife and I arrived a little late.  I have a hard time getting moving and a hard time staying moving and a hard time moving quickly and those are the three reasons we are usually late.  I normally sit at the back of the Cathedral because it is large and those seats are usually open and I am usually late, those are the three reasons I usually sit in the back.

On this day there was a lovely woman in her 70's sitting in my favorite pew.  It is my favorite pew because I can park my walker behind a column and nobody trips or catches a sleeve on it.  The music has already started (There is a new organist man can he wail, that is a compliment) so I stand in the pew behind her and ask if it would be okay if parked my walker in front of the column which would block her exit from one side of the pew (she could still get out of the small pew on the other side because she was the only in that pew)?  She smiles a grandmotherly smile at me and says of course.

The time for communion comes, my wife and I do not take Communion.  Communion is for the members of the Catholic Church and all though I am on the road to conversion my journey will not be complete until next year when I am baptized at the Easter mass.

Sidenote:  For the curious, if I do take a turn for the worse before next Easter they will take care of me and I can be buried in a Catholic cemetery.

Sidenote to the sidenote:  If anyone ever has any morbid questions they would like to ask, I do not mind answering them at all.

Smiling grandmother gets up when the usher indicates it is her time and she travels to the Altar to receive communion.  She comes back to her pew and prays for about five minutes and when she stands up to leave she reaches over the pew and grabs my hand and says "I prayed for you to be healed" and with a smile she walked out of the Cathedral.  I had never seen this lady before and probably because I usually go to Sunday Mass and this was the first Saturday Mass I had ever attended.

My wife began to cry and probably not for the reasons you think.  My wife and I both believe that all prayers have value and are heard and answered but in the end we must rely on the judgment of God. That means if the time is right I will be healed and if the time is never right I will never be healed.  She was not crying because I was going to be healed and she was not crying because I was not going to be healed.  She cried because of the overwhelming emotions that came when a stranger had taken time out of their day to pray for me.

That five minutes she gave me may not seem like much but on that Saturday it meant the world.  Over the past four years we have had a pretty rough go when it comes to people.  A couple of people have stepped up and a couple of people have helped as much as they could and can not be faulted and then the rest of my friends and family kind of suck and when that is juxtaposed with the selfless act of a smiling grandmother...well I hate to be cliche but it is was a moment that restored our faith in the men and women of this world.

What did I take away from this fabulous encounter with this fabulous woman?  Simply that it was wonderful and the only way it could have been any better is if she called me mijo.  Okay and one other thing that is probably a little more important...the people that go to the Cathedral are kind and generous and I am lucky to go the most beautiful building in Utah (In my opinion). The Cathedral is great beyond its beauty and that is because of love.  Every church regardless of its beauty should be full of love.

It is hard work to wait for miracles but it is worth the wait.

Tuesday, June 24, 2014

Wife and Weakness

The first thing you read when you get some random illness that has no known cause or cure is that you need to avoid stress.  After four years of being ill this still escapes me.  I will take some of the blame, it is after all hard not to obsesses about how your body is devouring self and laughing in the face of modern science but it does need to be put aside, there is still a life left to live, right?  That being said this post is about the world, you know that thing that keeps spinning and as it turns out my wife might just be my world.

My wife has become the center about which I rotate.  Copernicus was wrong she is the only star I know of.  Sickness is isolating but I will never be alone because my wife lives her wedding vows.  My wife and I still need interactions outside of the marriage, The Turtles were quite prescient when they said two is the loneliest number since the number one.  I have encouraged her to get out and enjoy her friendships and she has a lot of friends after all she is quite likable.  She does not like to leave me alone, it is hard for her to enjoy herself when she is worrying about me.

I encourage her for selfish reasons, if she does not get time away from me despite her love and her vows I would become an anchor or a small black hole. I fight everyday to be a man she can love and is worthy of her love, because for certain I am not the man she married. Over the past four years it has been hard to become someone new and remember to strive to be someone that my wife would want to love.  We both mourn for the man I was but we can not mourn together.   We are mourning the same man but truly we are mourning two different men, it is hard to explain but somehow the man my wife is mourning was a better man than I was, I admire him greatly.

I miss having strength.  Without strength you must rely on people or if I may paraphrase my favorite playwright Tennessee Williams I now must rely on the kindness of strangers.  Now that I am weak I have given much thought to not having strength and at this point I can say that being physically and mentally strong gives you an illusion of security.  When I was a child I never felt safe and I wont bore everyone with my sob story because it is really no different than anyone else I grew up with.  I am sure everyone knows someone who had it rough in the same way I had it rough.  The one thing from my childhood that keeps me going is that one guy that slept with his sister, anytime the shit gets real bad I always say to myself at least I am not the guy that slept with my sister.

My childhood was like an after school special about abuse and as I grew up and became physically strong no one abused me anymore.  I often joke I was raised in a Skinner box but that is an attempt at humor, truthfully in many ways a Skinner box would have been preferable to what I had.  At the age of twelve I had a growth spurt and reached the height of five foot ten inches tall and could pretty much beat the shit out of anyone or at least use my size to make people believe I could beat the shit out of them and the abuse stopped.  It might have stopped because I was no longer a cute kid anymore but in my mind it stopped because I was strong and able to defend myself.  At the early age of twelve being strong and defending myself became a large part of who I am.

Now I am weak and with weakness comes dependance or I should I use a less loaded word and say I am now forced to rely on people.  I beat my head against the wall for four years denying my loss of strength but eventually I became so weak that I could no longer beat my head against the wall.  In more concrete terms I have been sick for four years and three months and during the last three months I have made a cease fire with the reality of my weakness.  Part of the terms of the cease fire are that I must accept that I am no longer strong.  With that there has been some Pink Floyd like screaming and falling down the spiral abyss of depression kind of stuff but those are the last throws of the strong man dying or should I say the strong man realizing he has been dead for four years.

There are days of peace now.  Days I see the beauty in my wife doing things for me and I those words are inadequate to describe the fairy tale like experience it is to see someone love you and help you and care for you and keep the union of our lives together.  You ever see that movie Legend with Mia Sara, Tim Curry and Tom Cruise?  If not you should it is a brilliant movie by Ridley Scott that still holds up today.  Anywho there is a moment that was filmed with a soft lens and some Vaseline and we see Mia Sara reach out to touch a unicorn and it is beautiful and it is a transcendent moment.  There are days in my weakness where I reach out to my wife for help and it is beautiful transcendent moment and we are one.

Side note:  I am aware of the similarities between Adam reaching out to God on the ceiling of that church, it was intentional.

I am not sure that last paragraph said anything or that it conveyed what I wanted.  I want to clarify a couple of points.  First point of clarification there is beauty in being weak and needing someone.  I did not fully appreciate the love of my wife until I became weak, when you become weak and you are willing to accept help you and become open.  When I first admitted my weakness and asked for help with no pretense I was struck down like Saul on the road to Damascus.  I was struck by the beauty of my wife and the light surrounding her love.  This is an inadequate simile but it really can not be described in words, it was a moment of transcendence.  I have learned to be grateful for help instead of resentful, well at least for the most part.  Sometimes people can be a real douche when they are "helping" you but today remember how beautiful it is to have people love and help you.