Tuesday, March 31, 2015

Palm Sunday and My Dad (The Tale Of Satan's Tic Tacs) Part 2

This is the second part of a multi-part series (I am not sure how much many parts I am going to write) here is a link to part 1

Palm Sunday and My Dad (The Tale Of Satan's Tic Tacs) Part 1

Day Two

This is almost a side-note but I think it is still at the aside level so I wont separate it as per protocol.  When I am on large doses of prednisone I can write and write and write, obviously I have more time since I am not sleeping but also my brain manages to shift down while I am going up the hill of writing.  If you try going up a hill with your car in 3rd gear, depending on the car, you can make it up the hill but your car will climb the hill slowly and perhaps die but if you shift the car to 2nd gear all the sudden you seem to have more power but you don't you are just making better use of the power you already have in the current situation and that is what my brain does when I am on high doses of prednisone.

The point of the preceding paragraph, which I have to mention now because I did not manage to make it in that paragraph, and that point is if I do not stop writing I will not stop writing.  The rambling will continue and like you saw in Part 1 it went here and there because everything that popped into my huge noggin had to be extrapolated on and the writing, much like the beat, goes on.

Other side of the magic of being able to write and write and write is that when I stop and then come back to "finish" what I started writing I might be able to stay on topic the writing style is the same and the random sushi popping out of my noggin will not relate in a cohesive way to yesterdays noggin poppings.

Paragraph four of aside, I am going to start back onto the topic of Palm Sunday and my dad and the Tic Tacs of Satan but it might not flow like I think it should in relation to the previous post and I am pretty sure it wont flow by the measures of you my faithful reader.

As time goes on and the side effects of prednisone begin to mount you will need to bring some more drug buddies along for the ride.  After a couple of weeks of no sleep and people are really starting to avoid you, this is the stage right after they look at you funny, you go to the doc and say hey I need some sleeping pills or I will literally go nuts and boom there you have some sleeping pills.  Then you begin to swell and retain fluids and in my particular retain fluids to the point where you can no longer bend your legs and then you say hey doc this whole non-bending leg thing just will not stand and boom you get some water pills to help eliminate extra fluids (in my case it did not work).  Then your skin gets so thin that when hit a shoulder against a door frame, just a brush, and boom your start bleeding and then the doc is like well that one you just kind of have to put up with because there is no drug to counter act that side effect.

This list continues and continues and I can't remember how many drugs I took at my mostest drug taking point but I think it was like twenty seven and yes I say like because I grew up in the eighties.  Prednisone also has one really sobering effect, not a side effect but an effect, it stops your immune system from working.  Sarcoidosis is a disease of the immune system and when push comes to shove the only thing any of the drugs they give me to "treat" my sarcoidosis is try and stop my immune system in various ways and this effect can have one bad side effect death.  When you are full of fluids and your lungs are damaged and your immune system is not working and then you catch a little bug.  There is a little cough as you fade to sleep and by the morning you feel as though you are drowning from every breath and there are rails and wheezing and you have pneumonia but it is not even a regular pneumonia it is some weird pneumonia that is antibiotic resistant and combined with you weakened immune system and you almost die.

I do not know whether I have written about that before, the whole drowning in my own fluids, I think I have but only in a jestful kind of funny isn't it great to read this funny fat sick guys blog kind of way.  I had denial and not de nile, denial.  I was sick, I had as the best case a life changing illness and at as the real case a life threatening illness and there were several times that I came close to death and would only admit it in the back of mind, under the reptilian part, I mean this was way in the back.

After five years I have done the cost benefit analysis and I would rather be alive and suffer than dead and not suffer.  Certainly my impending conversion to Catholicism has informed this decision but it is not the only reason.  I know many people that have known me since my youth long for the days of the fat existentialist atheism that they had fallen in love with and hoped to change and bring in the light from the depths of darkness of his angst and I know those people are thinking isn't it convenient that he gets a disease with some suffering and he finds a religion that has a positive outlook on suffering?

Yes it is convenient and I would even go as far as to say it is the divine convenience, it is the third cousin of both divine tragedy and divine comedy and overlooked for simplicity sake but no more.  The conversion has been years and will continue for years.  There was a great man, an evangelical preacher, he was a good friend and when I was struck blind like Paul he was there to guide me towards Jesus and from there my journey has lead me to the place I have always known would be my true spiritual home the Roman Catholic Church.  It feels good to be home.

Again stay tuned I think I have many more pages to spill out!

Monday, March 30, 2015

Palm Sunday and My Dad (The Tale Of Satan's Tic Tacs) Part 1

Today is Palm Sunday and so far it is has been a beautiful day, not without tears and some poignant moments.  The service was beautiful and started in the Plaza of the Cathedral of the Madeline, I did not start the service in the Plaza.  I have not talked about sarcoidosis or that I have sarcoidosis for the past while and I know a lot of people started reading or read this blog because of that connection to sarcoidosis.

First things first, I still have sarcoidosis and it still sucks.  My conversion to Catholicism has changed my focus and that has been apparent in the posts over the last years but I think I owe it to myself to not let this blog become a rose colored version of my life.

I went to our diocese's Chrism Mass last Thursday which is where all the oils that will be used for the upcoming liturgical year are blessed.  Priests come from all over the state to bring the blessed oils back to their Parrish and renew their vows.  The mass is a little longer than most but still just barely two hours which compared to the Mormonism I am familiar with that is still one hour shorter than three hours they have every Sunday.

The Chrism Mass was beautiful but by the end of the two hours I was trying not to disturb my fellow parishioners with my writing in my pain.  The neuropathy caused by sarcoidosis had my feet on fire to the point where I had my wife take off one of my shoes.  The Easter Vigil is coming up and that is going to be three hours long minimum and there are retreats of varying lengths and not to mention other Masses between now and then.  I was scared that I was not going to be able to make it and this is literally or figuratively (at this point I have no idea which is correct) once in lifetime experience.

That is where Satan's Tic-Tacs come in.  Five years ago when I was first diagnosed I frequented an online sarcoidosis support group and there was a member in that group that referred to prednisone as Satan's Tic-Tacs.  Anyone that has taken high dose prednisone for anything for any length of time will find that a fitting name for this "medication".

Everyone knows about the bargain Faust struck with Satan (if you don't highlight and Google) and 20 mg pill of prednisone is a deal struck with Devil, of course not on the level of Faust but none the less a deal with the Devil.  The first day your doctor gives you that script for prednisone you are dejected but hopeful after all one third of all sarcoidosis cases resolve without treatment and another third will resolve with treatment that leaves only a third of chance that your sarcoidosis will not resolve.  The next morning you take your first dose of prednisone (high dose prednisone must be taken the morning) and within a couple of hours you feel it...

Your joints begin to move with a fluidity that you can barely remember from a time of yore.  Your lungs slowly allow more and more air with each breath and you feel you could become a human bellows.  You no longer sleep fourteen to sixteen hours a day and in fact after the first day you wont need sleep much at all.  After a couple of days the inflammation in your ears begins to fade on your balance is better, not like a human compass better but better because it is a deal with the Devil and deals with the Devil have a catch and that is just the small beginning of the catches to come.

Also within a couple of hours your heart feels as though it will explode and not out of your chest like a cliche but just explode but stay in your chest and die from the exploded heart kind of deal.  Your head begins to pound like that one New Years Eve that you drank a unknown number of beer and the best part of a fifth of rum and apparently answered a call from a friend that happens to be a girl that  moved to California and you told her to move back and you would take care of her but then the next day you had a headache that felt as though Thor and The Hulk had been using your head as a medicine ball and you get a call from that friend that is girl and she does not believe that you can not remember your offer of the previous evening, yeah a headache like that.

You do not even mention those side effects to your doctor because even thou those side effects really suck you are a grateful because they pass and the pain and discomfort and general feeling of unwell fade and you are scared that he will lower your dose of prednisone because you did start out at a reasonable dose of prednisone and you did not see much relief until you hit eighty milligrams a day and your doctor was concerned about such a high dose but you said hey do not worry because you were fat and the milligram per kilogram load would not be as great as with a person of correct weight for their height and that is like a totally legitimate thing to consider and you say you will call if there are any heavy duty side effects but you don't because after those few hours in the morning you don't feel it.

The Pain, the tenderness, the fatigue, keep naming symptoms, the symptoms fade and not so you are not aware of them (except fatigue because after a week you have really not slept at all and you think you might be going psychotic from lack of sleep) and there is a moment to look over and see how beautiful my wife is and not think about anything else, not have to "mindfully" observe your pain or push through or past, all that is needed is a few well placed nudges and you can sit there and enjoy the sight of your smiling wife and she does not smile that way much anymore.

What way is that you may ask?  Without a look of worry or concern from you, just a genuine smile from her because she can see you are not in pain that you are enjoying the moment and the gift from God which is life.

Tune your radios to this same station at the same time to hear more from Fat Rasputin, well probably more the future is not mine to know but I do know from the past that I have been listening to a lot of old time radio this past week, mainly Pat Novak for hire and I think that is because the Bishop is from San Francisco, bye for now.

PS I did forget to talk about a bunch of things like skin lesions and such but I still have brain damage as an excuse so be aware this is not an exhaustive list of everything I have going on but it is the list I can remember to put down right now.

Friday, March 20, 2015

Saint Patrick's Day (This Year It Is Personal)

So it has been a long week, acupuncture, x-rays (not related to acupuncture), blood tests, wonderful last church class before Easter but I am officially beat up.  Also for the record when a doctor makes you spend the day at the hospital just to do what you asked him to do over the phone, I know he cares and he wants me alive but it can be a little frustrating.  Also my automated Reddit to Facebook decided to share every post I have ever upvoted instead of just the new ones but hey it is Friday.  Also I literally slept 20 hours one day and it fells like a lost a day from this bug I picked up, I remember the good old days when I was sick on Saint Patrick's Day from drinking to much booze, oh the times they are a changing.

Tuesday, March 17, 2015

If Someone Asks You What You Have Been Doing Sometimes The Whole Truth So Help You God May Be Too Much

This is a post I started a few years ago and never finished, well at least until now (sinister laugh, provide your own sound effects).

I have not been able to work now for over a year.  When people meet me it is like there is some Harry Potteresque sorting hat that divides them into two camps, the people that like me and the people that do not.  If I was a writer I would add some fancy nuance to that statement but I am not as much a writer as I am man who types the first thing that comes to mind for better or worse.

Side-note:  Bravado aside there are some people that do not have strong feeling for me one way or the other but I read some other blog about writing blogs and I did not think that would be as dynamic and I am trying to modify my writing style from rambling to dynamic rambling.

When I was still working I thought most of my co-workers did not like me but liked that I got stuff done, also I worked cheap.  I had a few people I was close to at work but you know I was that one guy who worked in the back office that lacked social skills and did not understand humor in the "traditional" sense.

At least that was my perception of the status quo before I became noticeably ill.  When my co-workers noticed my sickness manifest itself: they were nice and they were compassionate and they were caring.  Now I noticed my co-workers generosity of spirit but thought it was just that, generosity of spirit and I did not think more people liked me all the sudden, I just thought hey nice people are nice to people in need it does not mean they like the person in need.

So fast forward to a few years ago (remember I started this post a few years back) and I had not been able to work for a while and my prognosis was not looking good.  My wife and I had been working with a lawyer and ourselves to plan for my imminent demise.  We were hopefully planning for a long way into the future just to cover our bases but secretly my wife and I both thought we were planning for the not so distant future.

At this point I think the exposition is done, at this point to the best of my knowledge the exposition is done.   I will notarize this later but really I am sure it is done, probably.

So you see I stop by my old workplace, the credit union, to get some financial stuff in order, you know the stuff for my not so maybe imminent death.  I am talking with the manager and my wife is there and everyone is smiling and from what I recall I was at the top of my game and I was making people laugh and smile and such and then it happened.

Another manager came in that had been promoted to like an area manager let us say for the sake of this blog post.  She came in and was happy to see me and more than oh is that nice to see you kind of happy, it was like a genuine pleasure to see you happy.  I do not think I appreciated this at the time but the past is the past and I hope to learn from it anyway here it goes.  She asked what we had been doing and I said planning my death.

I was not being glib and I was just being matter effect and all right I might have been trying to be a little funny.  This person that was genuinely glad to see me started to cry.

It took me years to come back and finish this post.  It made me uncomfortable to think that I had read people wrong.  I am afraid of people and reading them was my way to control that fear and then it happened.  After some thirty five years I had changed and I had become more lovable and that was terrifying.  I still have not worked it all out but having people care about me is a weakness and at that time I could not see the strength in being loved.

Just to clarify: it is not funny to joke about your death to people that care about you.  It is my coping mechanism but I have tempered it or I better said I try.  Loving God and loving your neighbors are the two most important commandments but what is rarely mentioned is how hard it is to be loved.  Growing up as a burgeoning sociopath I did not have a problem with a lot of people coming around loving me.

I am no longer to be feared, my anger has left me and my body is broken.  Sometimes you catch a glimpse of the road ahead and it helps you carry on and that there may be freedom to be found in the pain, the pain of the past, the pain of the future, and the physical and emotional pain of the now.

Tuesday, March 3, 2015

It Has Been Long Time Since I Published A Blog Post (Did That Sound Like A Led Zeppelin Song)

It has not been a long time since I have written, most weeks I manage to some write something and indeed some weeks I am prolific, I have some thirty odd posts that I have not published.  Then you may ask yourself what is the deal?

There are a lot of deals and you knew that before asking, I mean really what in life is simple?  So I have a couple of options. Number one I could bitch about how my brain refuses to allow for decent copy editing most days and the stuff I turn out is usually in desperate need of copy editing and then that would proceed into bitching about how some days I can just not muster enough of, well for lack of a better word ganas.

Ganas is a Spanish word that does not directly translate into English. Depending on the situation it can be poorly translated as desire, forward, want, things of that nature but none of those really it do it justice.  My friends that are fluent in Spanish know what I am talking about and everybody else is lost and to bring the lost back on to the path and for the those that are not lost make sure they know where we are going forward.

I only use the word ganas in one way when speaking to anyone in any language.  Fire, like the fire of passion.  Language fails me here either from my lack of mastery or its' lack of ability but the result is the same, every time I try and write about the fire of ganas it comes up short.  It is basic and primal, fire for today, fire for tomorrow.

Much like the triangle of fire from my boy scout days the fire of ganas is made up of three parts.  The spiritual, physical and mental make up the three parts.  It is not an equilateral triangle and it is not a total sum game, meaning there is no number system that describes it.  You are not trying to get to 300 and some days it is 200 from faith and 100 mental and other days it is 100 from each, it definitely does not work like that.  Anywho after a paragraph of trying to describe it I have managed to tell you several things it is not, I think it might be me falling short and not the English language.

I think it this time I am going to let you the reader use your understanding of what it is not to imagine what it is.  Also throw in some Jiminy Cricket just for some spice because there is spice in ganas.

Aside:  I like similes and metaphors, there I have said it out loud.  I know everyone already knew this but the first step is admitting you have a problem.

After all that I have not mentioned Led Zeppelin or what ganas has to do with posting on my blog, I think you are probably smart enough to figure it out but just in case you are not.  The title is going to have to be enough clever Led Zeppelin talk for today and below I will try and bring the Ganas around to why I have not posted in almost a month, wow I do suck I am sorry but can I use the sick card?  I am sick I swear....


The past while has been hard for me physically, I am often reluctant to talk about the details because I hate reading those blogs where there person relays how sick they are get off in some Munchhausen By-proxy Syndrome kind of way from people reading their story and feeling sorry for them.  I write this to document my successes and struggles with the twofold benefit that I release it from my mind and during that process I sometimes learn something and other times it is just a release that it is now somewhere else and not just in my mind.  The other benefit is that I hope I help people, I hope I help a lot of people but even if I just help the few I know about that is enough.

Aside:  When I was first diagnosed with sarcoidosis there was a blog that I read and related to and it gave me a lot of comfort during some hard times (i.e. existentialist angst at the thought of my potential demise).  The guy writing that blog died so again I will pledge to do my best to not die.

This has been a little bit rambling and I am in doubt of its overall coherence but I will try and wrap it up here.  My faith is God has been strong.  My spiritual health has wavered in the past, I have an understanding of the spiritual purpose for my pain but some days my pain wears against my understanding like understanding is sandstone and my pain is water and my understanding can slowly be washed away.  My wife does a lot of the heavy lifting when it comes to reestablish my faith but I have also been lucky to have a relationship with a Deacon from my church who has helped with the heavy lifting and has given me tools that I can use to lift myself up.

All rightly then that was a little off topic but I am going to leave it in, I think there might have been a good simile in there.

Over the past while that I have not posted there have been different problems with my ganas so to speak.  Mostly it has been physical but it would be a lie to say that I have not had weakness in the mind or the spirit.  There are days where my mind has no desire to process anything, i.e. information, emotions, Judge Judy, I mean anything.  I do not know if your mind can really get tired but there are days where my mind is too tired to push anything onto the virtual paper.  I don't like to think about it much by my physical decline has affected my mind in ways I still do not want to consider but for the sake of my current unrealistic world view I would still like to treat my mind as being completely separate from my body.

I think I am ashamed to say that some days the spirit is not willing.  It is not as easy to quantify as physical or mental and I am aware of how nebulous those are.  There is never a day that I doubt my faith but there are days that my spirit finds my faith lacking.  It is not a failing in my Church but a failing in me.  In its simplest terms there are days when I feel the world collapsing and I ask why me?  I will not get a satisfactory answer to this question why I am alive and the petulant child in me lacks patience.

Everyday that anyone gets up and does anything is a wonder, congratulate yourself, someday life is harder than others but you get by and move from day to day and some days that is a miracle.