Tuesday, March 18, 2014

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

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

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

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

Everyday Cognitive Failure in Sarcoidosis

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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