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.

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