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.