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.