Tuesday, April 15, 2014

Panic Attacks and Bleeding (Not at the same time, well sometimes at the same time) (Hey maybe do not eat while reading this either)

Sarcoidosis is a funny beast or I should say my sarcoidosis is a funny beast.  Sarcoidosis is usually boring and not really funny or beast.  Most of the time sarcoidosis behaves in a predictably mild way but there are always outliers even if you think the world conforms to the Bell Curve.  Once you start talking about the outliers in the world of sarcoidosis you are talking about diversity, a community of individuals.  That was fun to write, I like words, anywho the point being that my sarcoidosis is my sarcoidosis and my medical team has reached the point where there is no data, there are no educated guesses, and in fact the best we are shooting for now is informed guesses.

You may now be asking yourself what does that preamble have to do with the title?  The answer is simple, I do not know, I am hoping it will tie in before I am done writing.

I sleep laying on a blanket I place on top of my sheet.  Over the past four years of being sick various substances have leaked out of my body during the night and now for easy clean up the blanket is in place.  This morning I woke up to a bloody blanket and it was not bloody like a had a bloody nose in the night bloody but horror film bloody, actually the more I think about it, it was probably more a thriller film bloody and not a horror film bloody.  Standing next to my bed it definitely looked like a crime had been committed.

Sarcoidosis effects my skin and rather than get all technical I will give you a few easy ways to picture it.  The first way it effects my skin is I have skin lesions that look like a really bad rash and having had some really bad rashes (I prefer not to talk about those details) they feel like a really bad rash.  They will ooze and fester, that was also fun to write.  I do not think they actually fester and truthfully I can not remember what fester means but I love saying it in my head, fester fester fester.  Anywho they itch like crazy, to the point you want to take a garden rake to them but don't scratch them not even with your nails.  What happens if you do?  Well apparently the rash is just the top manifestation and there is damage through all the layers of my skin and if you scratch they bleed.  They bleed like someone does when they are being scarified in a movie (I was left to my own devices as a child and my own devices started with Hammer Horror and went from there).  They bleed like a hose put on a trickle to water some plants and direct pressure does not seem to be doing in the trick but it is hard to tell because you are still scratching them.  I would rather be in pain than itch like that, it literally tested my sanity.

At this point I do not really have problems with my type one lesions anymore.  They always occurred on my shins and at this point I have a four inch by six inch scar on each of my shins.  When those lesions flare up now so to speak the scars will raise a quarter to a half an inch and it kind of bothers me but there are not a lot of itching sensors left in my shins so I can tell something is going on but not enough to distract me from my other symptoms.  When the flares are really bad my scars will open and bleed a little even today but not like the good old days of first being ill and not enough to cause my morning crime scene.

As I see this blog post lengthen I am going to be quick about the next two types of skin lesions and kind of lump them together.  I get two different kinds of lesions on my torso and my non shin legs (mostly by my hips close to the torso).  They are different but they are the same.  They both seem to eat me from the inside but in a more subtle way, there is no itching.  At some point (that point varies from lesion to lesion) they will begin to bother me and it is hard to describe.  It kind of feels like an insect walking across your skin but the insect is going around in a circle in one spot on your skin but it does not feel like an insect and you go to investigate because you can not tell what it is.  Those words were not fun to write, that description is not right and I can not find the right words.  Maybe the way this feels has not been described in the English language before or maybe my derivative writing style can not muster the vocabulary necessary to describe them but either way that will have to do.

They usually occur in places that are not easily viewed by my naked eye (or my eyes with glasses on  for that matter) and I will reach to feel what is going and it is like a volcano BOOM!!!!  I will bring my hand up and there will be blood and bits of tissue and there is a hole left in my torso or legs sometimes as a big as a golf ball!!!!  That is right exclamation points!!!!!  These holes will bleed and bleed until they do not feel like bleeding anymore and my efforts to stop the bleeding have little effect or maybe no effect and I am just kidding myself.

One time when I was still working I went to the bathroom, wait for it, wait for it and I sat down to use the facilities and my underwear was red with blood.  One of my lesion friends had exploded with me none the wiser.  Now I am sitting there doing my business that I came to the bathroom to do, thank goodness it was a single bathroom and I was not in a stall, and I am thinking about how to proceed in this situation.  I grab some paper towels and line my underwear to form a makeshift adult diaper designed to catch my blood.  I am not usually thankful for being fat but this time I was, nobody was going to notice I had a roll of paper towels in my pants and no that is not a sex thing.

Then I proceed to perform first aid on my new found hole.  It is bleeding and after ten minutes of direct pressure I am thinking that somebody might need to use the bathroom and I better just go with what I had to go with at that time.  At that time I had a bleeding hole and some paper towels, I tore off some paper towels and shoved into the whole thinking that if I sat still it would give something for the blood to coagulate around and I could get through work.  Now before you deride this idea who has not shoved some toilet paper up their nose to stop a bloody nose?  Now you might be telling yourself that a bloody nose is not the same as a bleeding hole in your leg and it turns out you would be right.

I did make it until the end of the day and when I stood up to go home everything felt wet.  I had black jeans on, thank God, and I sat on a black vinyl chair, thank God but even with those two factors working towards me I was panicked because there was a pool of blood in my chair and even though my pants were black I thought I might drip blood from my saturated Levi's.  What did I do?  I searched my cubicle that I had never really gone through since I had come to occupy it and I found a dusty roll of toilet paper and you know what?  It was beautiful and I was able to get out to my car and all was good with the world, bleeding embarrassment avoided.  As I write this I am not sure why I have included this tale of woe but I do not care it is included and it is not going to be excluded BOOM!!!!

I think you the reader has probably ascertained that I have been bleeding for a while and like a lucky MacGyver I find away to fix whatever problem the blood may bring.  Which leads us to today.  This morning when I saw that blood I had a panic attack.  Not because there was blood on the blanket, not because I was bleeding but for a reason I could not readily describe to you.  Does that sound irrational, maybe a little crazy?  Yes, boom?  I guess I would probably not have been panicking if the feeling was rational.  This blog post has become way to lengthy so Google the symptoms of a panic attack if you want and just be aware my experience is pretty typical.

You ever see that bumper sticker or T-shirt that reads of all the things I have lost I miss my mind the most?  In the past I never thought it was particularly funny but now I find it hilarious in an ironic kind of way not really laugh out loud kind of way.  A couple of weeks back I was complaining about how hard writing had become but now that does not seem to be that big an issue, now don't get me wrong I still can't write and this little post here took me eight hours to spit out and contains no editing but it does not seem that important when you can feel the pressure of an anxiety attack forming and you know there is no reason for it but it still keeps coming.

I shut down my Facebook account because I felt like it was crushing me under its enormous weight and I have shut down everything but my email and phone.  I will use email still but chances are I will not answer the phone when someone calls and chances are even greater that I will not pick up the phone and make a call.  I don't want to leave the house and if I was feeling better physically I would be in a blanket fort as I am typing this.  I had every intention of shutting down this blog but it is terrifying me like any other contact with the outside world but I got an email from a friend of mine today.  She said she had been inspired by my blog and had made changes in her life for the positive because of what I write here.  She inspired me and all though my hands are trembling and it feels like some giant is crushing me in his hand, I do feel a little victory now that this done.

All of the things I have lost I miss my mind the most and I am discovering there is something new to lose everyday, cognitive, emotional and I am literally terrified to find out what I can lose next but I have friends who care and I will post this to Facebook and tell everyone why I will not be around on the social media but well, ummh I am scared to do that but I will.  I have friends that care about me and even though it is hard I care about my friends.

(My wife will fix most of the crap mistakes later so if you read this and it makes pretty good sense I need to thank her, I am also terrified to be with anyone including her but she really cares about me and she will hold me when the terror comes and for a few moments love does conquer all)