Sunday, June 30, 2013

Have you ever put a gun in your mouth?

Yes, I have put a gun in my mouth.  I write this blog for two reasons, one for my own catharsis and two with the hope of helping someone.  If I am writing this too help people by sharing my experience I should probably share the parts that make me uncomfortable as well.

The month before I started Remicade was bad.  To put things in perspective I was on the receiving end of pedestrian/auto accident when I was fourteen.  I had several injuries but the worst was my leg.  My foot had become disconnected from my leg, at least in the sense of my skeleton.  It was attached but not in a natural looking fashion.  My tibia had also split length wise, three inches from the ankle.  At that time it was the most physically painful thing I had ever experienced.

Flashback to when I was first sick.  What finally drove me to the doctor to finally be diagnosed with sarcoidosis was pain.  I was leaving a dinner with my father and it felt like someone had ran a railroad spike through my back to the point where it was almost coming out the right side of my chest.  If getting hit by a car was a ten on the pain scale this was an eight.  I went around with that pain for two weeks.  It had not lessened and I finally broke down and went to the doctor.  I won’t bore everyone with details but if you have any questions or you would like me to expand on something for a future blog post let me know.  My email is and my twitter handle is @frasputin.

One final flash back to about a year after my diagnosis and I knelt down to lift a chair up to put a rug underneath it.  My knees felt like someone had stabbed large carving knives into my knees and then had grabbed a ball peen hammer and was beating around the knives that had been stabbed into my knees.  With the car accident still being rated as a ten on the pain scale, this was a twelve.  I became nauseated and for lack of a better word swooned.  The happy ending to this story is the pain eased up in about five minutes; now in what I call pain time, that seemed like a lifetime.  

Now we come back around to the month before I started Remicade and it was bad.  My hips, knees, and ankles have been the most effected by sarcoidosis.  For the entire month the lowest my pain level was an eight.  There were hours at a time when the pain level would be a twelve.  I would writhe in pain, I would cry out, and sometimes I would weep.  I took pain pills and found no relief, I took twice as many pain pills as I was prescribed and found no relief.

Now I am about to talk about religion and faith.  Do not let that scare you off.  I came to Christianity late in life and I must say with great reluctance.  I do not speak of my faith often and I never try and convert anyone.  I could not be converted by anyone when I was an agnostic. I had searched and read a great deal.  I had always believed God would not give us the ability to reason and then ask us to suspend it.  Most people I spoke with had no real understanding of their own faith, and to be honest I thought them fools and dismissed them.  In the end I had a Saul on the road to Damascus experience, since I did not share my experience with anyone and it has no earthly reference I do not speak about it.  (I am aware Saul did not actually get struck down on the road to Damascus). 
I do pray- but not for relief.  There is a Catholic prayer that you can ask Christ to take your suffering and use it. Here is a link to the prayer .  I like the idea of my suffering being offered up for the life of the world.  I buy a lot prayer cards from this site, I like his prayers and he has a good ministry.  Whenever I buy a few cards from him he always send me twenty or thirty, but I digress.  

I am an optimist in the sense of Thomas of Aquinas or I guess more accurately
 Gottfried Wilhelm Leibniz.  You are welcome to read about optimism from these two giant thinkers but I will give you a brief and incomplete sense of what I mean.  I will start with a few postulates that I know cannot be proven but I believe.  God sees all, the past, now, and the future.  God is good.  God is all powerful, including complete power over Satan.  That being said the world he created must be good and following that the pain that I experience is good.  Not good in the immediate sense that we can understand as humans but good in the sense that is part of God's plan which will always be for good even if it is beyond our understanding.

Now I know at this point you are probably wondering is he ever going to get the gun into his mouth?  The answer is yes the gun will end up in my mouth shortly.  I rambled on about my faith because it is the reason I keep a positive attitude in the face of adversity.  I have never questioned my faith or that my suffering is for the good.  I have questioned my ability to live with the pain.

I should also specify the month before I put the gun in my mouth was no picnic.  The level of pain I experienced  effected my ability to reason, my brain started to lose its form.  It started to become the consistency of runny Malt-O-Meal and then individual grains of Malt-O-Meal began to swirl and it became difficult to keep two of them together to form a thought.  All I could think is that the pain would never lesson and would never end.  I never wanted to take Remicade and my mushy brain did not consider it as the only or most desirable option.  I own a gun and it began to speak to me.  It would say I can end this and send you on, the pain will end and you will be free.  As the pain would become acute, what the gun was saying started to make a lot of sense.

I would sit in my chair and I would need to take a shit.  It would hurt so much to get up I would start to think, how bad would it be to shit myself?  I never did, at least not in relation to pain.  There was one instance but that is for another post.  I could not sit still and I could not move, I was in a lose lose situation.  I would think about killing myself in the abstract to start with.  Could I still go to Heaven if I shot myself?  It was a nice mental exercise but as time went on and my reason left me the thinking about suicide became less abstract and less philosophical.
I own one gun.  It is a .357 Magnum handgun.  I went and opened the safe and took out the box that held the gun.  It is looks like silver and smells of gun powder.  The silver almost looked like it was moving.  The smell was of cheap gun powder that is dirty and burns slowly.  I held it with both hands letting it rest across them almost like was holding a prize fish for the camera.  It was cold and heavy in my hands, it felt good.  It was not far from where the gun was resting to my mouth.  The distant was covered quickly but in slow motion and then it was there.  It was colder in my mouth than in my hands and I was surprised it tasted more like gun powder than metal.  I knew I had an alternative in the short term; I could try Remicade.  When your brain is occupied with pain it does not leave a lot of room for rational though. There are reasons I put the gun away, but it was hard.  I do not remember putting the gun away but I did.

Now what is the moral to this story?  There isn't one.  Sometimes it gets better, sometimes it stays the same, and sometimes it gets worse.  The only thing I have to tell you is I understand and I do not regret being alive today.  The Remicade has reduced the pain and I feel re-energized.  That being said the pain is returning, not as bad and not as relentless as before but it has left me afraid.  Afraid to sleep on the chance that I wake up and my respite is over.


The majority of my blog posts are stream of consciousness that spewed from brain, spell checked and the posted.  I thought that this was more important topic than most of my posts so I had some editorial from a cousin and would like to thank her here.

Sunday, June 23, 2013

Remicade Begins

It is hard for me to leave the house.  I do not enjoy going to hospitals.  When  I get home I am sore to the point of immobility and fatigue, well do not even get me started.  All that being said none of these are the reasons I dreaded going for my first Remicade treatment.

Over the last three years that I have been ill Remicade was always in my back pocket that if things got real bad we could always pull out the Remicade.  The fact my doctor wanted to start Remicade indicates that things are really bad.  Also and more important for my psyche is that there is nothing left to try if Remicade does not work.  This is the last drug that is used for sarcoidosis.  After this I might be heading to Canada to see if hook worms can modulate my immune system.

The post is actually being generated over a few weeks.  My second treatment is coming up this Tuesday.  The first treatment was a non-event for the most part.  It was painful and I could not get comfortable in the hospital bed, but the staff was nice.  I guess I should specify I was in pain from being sick the treatment itself really caused very little pain.  The only side effects that I experienced the day of the treatment was some burning at the IV location and a headache.

The next week after that first treatment was quite rough.  I thought sarcoidosis had taught me what fatigue was, I was mistaken.  I slept twelve hours every day, one day I even slept sixteen hours.  I would wake up tired even after sleeping that long and my limbs felt like they were soaked with water to the point were they had tripled in weight.  The second treatment is coming up and I have not noticed any improvement but there probably wont be any noticeable improvement until the about two months in.

The second treatment is over.  This time I was much more prepared.  I have finally gotten Fallout 3 to work on my Windows 7 laptop.  A small thing but with a large impact.  First I have never finished the DLCs of Fallout 3 so this would not be a rehash but some new game playing experience.  Sorry I nerded out there a little bit.  The point is I brought a game and my narcotics so I was much more prepared.  I took the narcotics and the headache was minimal and playing Fallout 3 the time flew by.  Four hours and out.

The next week after the the second treatment was much better.  Now I was still tired but did not sleep over twelve hours.  My limbs felt a little damp but not soaked.  I still have not noticed improvement but as always I am still hopeful.

Monday, June 17, 2013

Can I have a cat? (A repeat if you follow me on Twitter)

My wife and I have discussing getting a cat ever since I fell in love with my sisters feline a few years ago when I was at her home for a visit.  I have not had pet since my childhood dog was put to sleep when I was sixteen.  I loved that dog greatly and in fact was left so hurt after her death I never had another pet again since.  I did have two cats that I had concurrently with that dog but never a pet since.

I am home most of the time now since I am unable to work and or drive.  To be honest I am lonely and the thought of a cat as a companion does make me happy but the second thought that comes right along is could I tolerate the loss of another beloved companion?

I asked my wife this very question and her answer was that she did not think I could handle the loss of another pet.  I then inquired as to why she thought I should get a cat?  At this point I should remind the reader you should never ask questions if you are not prepared for the answer.  Her answer was that with the proper care the cat would more than likely outlive me.

Sunday, June 9, 2013

What not to say to someone who has a potentially fatal disease (Part 2 religion)

I must preface this by saying my faith is what people see when they say they admire how I handle being ill.  In another post which will be titled The Reluctant Christian I will attempt to explain how I rely on faith to live each day but for now I think it would suffice to say I am a man of faith and I do actively rely on it.

Now with that the personal stuff is out of the way let us continue.  This is the United States of America and in this country and we are guaranteed freedom of religion.  That is the freedom to practice our religion but also that my practice of my faith, for lack of a better word, will not be inflicted on anyone who is not interested in my faith.  I believe in these principles to such an extent I would give my life in order to protect them.

Now with that the philosophical stuff is out of the way let us continue.  Things you should not tell someone who has a potentially fatal disease, number one you have the power to heal yourself.  Again I know these are well meaning people and I do not discount that my positive mental outlook helps me cope with this disease but since I am still sick that means I am not using the power and I must still want to be sick?

Number two if you believe what I believe you will be cured.  Now this is wrong on so many levels it is actually hard for me to articulate.  So my faith must be wrong because I am still sick and if I just convert to your faith I will be healed?  I am not interested in converting to your faith if your God will not help people unless they convert and that he moves you to pray on the sick who at their weakest.  I welcome anyone to pray for me in their way and if I am healed by them I will convert.  That is a standing offer.

Number three God is punishing you for your bad deeds.  So Hitler has to kill himself but for me being a child bully and being married a few times gets me sarcoidosis?  If that is how God really operates I prefer not to believe in that God and enjoy my ignorance.

Sunday, June 2, 2013

What not to say to someone who has a potentially fatal disease (Part 1 science)

There are lots of things not to say and I will admit I misled with that title because I only want to focus on a couple of things you should not say someone with a potentially fatal disease.  Do not tell them you know of something that will help if that something does not have specific scientific or clinical information.

Now I am not talking about the general stuff like drink lots of water, get enough rest, don't step on rusty nails, etc.  I am speaking of the I read on the internet about this diet, laser, incense, etc that has been shown to heal everything.  It makes perfect sense, your electromagnetic flux is out of alignment, your Ph is out of balance, you need to eat the same diet as the dinosaurs.

I will admit that I am losing my patience for these well meaning people.  It is possible that these people have not been exposed to the scientific method or critical thinking and I use this to comfort myself but upon occasion I will explode.  Do not bring anything to a sick persons attention unless it has something formal to support it.

I do not need peer reviewed publications but I do need at least a scientifically based hypothesis or a formal study of preferably double blind nature but I will take any kind of study.  Some guy or girl on a website spouting pseudoscience crap that they are for the most part making up with a little basis on what they can remember from high school is not acceptable.