Monday, August 26, 2013

Pain Pills (Part 2 Fear)

Now here is the real fear.  The pain makes life unbearable and the drugs, well they don't make you feel good but they make life tolerable.  My current doctor who has followed me for three years understands and would not take away my pain pills.  What if he dies, what if he moves, what if he moves facilities and is no longer on my insurance?  That means a new doctor...

I am fat, I think that is the simplest and most descriptive word.  Sometimes when I see a new doctor sometimes all they see is that I am fat.  Real life example I went to see a rhuematologist and he kept telling me my nerve damaged was caused by my diabetes.  Only problem with that is I do not have diabetes.  I told him I don't have diabetes and he continued on about how I need to see an endocrinologist.  I told him I have an endocrinologist and that if he would look at the notes he would see I don't have diabetes.  I also invited him to call my neurologist and he could explain to him how sarcoidosis was the cause of my nerve damage.  This was like me talking to a brick wall.  Apparently in the medical world if you are fat you are a liar.

That is what I am afraid of, the fat factor.   I can't imagine what it would be like without pain medication and I am afraid.  I am seeing a general practice doctor and I am hoping to build a relationship with them so they know everything that is going and I can be a little less afraid.

Pain Pills (Part 1)

When I first started this blog I made reference to the fact that my room has become my prison  As I become more ill it become more accurate.  My pain level has increased greatly and I have finally broken down and requested an increase of pain medication.  The doctor gave me a prescription without any reservation.

I have been reluctant to take pain pills, I have been reluctant to stop working, I have been reluctant to admit I am sick.  I do not like to be dependent on anything or probably anyone when I really think about it.  I spent two months writhing in pain before I finally broke down requested that increase.  My main sarcoidosis doctor have built a relationship over the last three years and I have been reluctant from the start too take any drugs of any kind for sarcoidosis.

When I was first diagnosed I refused treatment for three months until I literally could not walk and was out of breath just getting out of a chair.  When we would try a new drug that would that would take six months to start working I would stay on it for a year just to make sure it was not working.  This is just a small sampling but it gives you an idea of the relationship I have with my doctor, he tries to give me drugs and I refuse.  So when I finally ask for an increase in pain medication he is like oh my and gives to me.

Now I know this was not very interesting but I swear part 2 Pain Pills The Terror will be.

Wednesday, August 21, 2013

Leaving the dream

First things first, sorry about the delay in the post.  A little bit of stomach virus / food poisoning / who knows but it did keep me down for a couple of days.  Now for the post.

I was emailing back and forth with one of my sisters and she asked what I as doing, I of course responded that I was dying (I think it is funny).  She then in turn said I was leaving the dream.  I think this is of course auto correct changing living misspelled to leaving but even if that is the case it is a beautiful sentiment.

Is this life just a dream and when we die are we actually waking up?  Beyond the beautiful sentiment if this is a dream lately it has become boring.  My grandmother always used to say that if you were bored it was a sign that you have a boring mind.  At this point grandmother I am willing to concede I have a boring mind.

The days run together now.  There are two reasons the days run together.  Number one the brain does not function as well as used to, partly from the disease and partly from the drugs I take for the disease.  Number two the days are the same, there is little variation from day to day I can never tell what day it is.  The only difference that I can tell is whether I have a doctors appointment or not.

Maybe when this dream ends another begins.

Monday, August 12, 2013

We all have to die from something

I have not given a lot of the details of the treatments that we have tried or that we are trying at any given moment.  For the most part I think these details are boring and I know that it is selfish on my part to exclude these details from fellow sarcoidosis sufferers that read my blog and may be helped by this anecdotal information but hey we are all selfish sometimes about somethings.  In order to stream what follows out of my head a few details about my treatment are necessary.

There are no drugs approved by the FDA to treat sarcoidosis but there are five different groups of drugs that are commonly used.  Usually you start with one drug, if that does not work you switch to another drug and so on and so on.  Depending on your doctor you may go through each of these five categories in turn sometimes trying one drug from each category and sometimes trying different drugs from each category.

Now if that doesn't work they will usually try a duo of drugs, one from say category a and one from category b or maybe one category e and one from category a.  You get the idea but generally speaking they (they being the "doctors") do not like to give you more than two of these drugs at any given time.  The drugs used to treat sarcoidosis are pretty hard on the human body.  Possible side effects are blindness, liver failure (death), heart failure (death), kidney failure (not death but not pleasant), cancer (maybe death maybe not) and erectile dysfunction (definitely not a good side effect).  Those are some of the highlights of the possible severe side effects and I have not even mentioned any of the host of lesser side effects.  When you mix two of any of these drugs there are a whole new list of side effects and quite a few of those are potentially fatal.

Yawn, I am pretty bored and I imagine everyone reading this is too, but now the background is complete we can get to the good stuff.  Over the past three years I have taken at least one drug from all five of the categories and during this time my condition has continued to decline.  Now lets skip ahead to a month ago.  For people that want to use Doctor Google I will list the four drugs I was taking to treat my sarcoidosis (I wont give you the list of the sixteen other drugs I take for symptom relief and to counteract side effects of the first four drugs I was taking).  Those drugs were prednisone, leflunomide, methotrexate, and remicade.

Now after two months of taking this mix I did start to experience improvement.  Unfortunately that only lasted two weeks and then the decline began again.  This has been the pattern for me.  We try a new drug or a new combination of drugs and I see some improvement for a couple of weeks, a couple of months or a sometimes even a few months but eventually decline begins again.  We, the doctors and I, have been aggressive in our treatment of my chronic and refractory sarcoidosis and at this point to little effect, hence the refractory part.

Taking all these drugs together for little or no effect is not a tenable path forward. What does that mean?  That means that the focus going forward is no longer finding away to treat the sarcoidosis but to make me feel as good as possible.  Now I probably would have used the wording making me as comfortable as possible but the implications of that terminology probably strikes a little to close to home.  We are not stopping the remicade, methotrexate, and prednisone and there has been cases were remicade has become more effective over time but in essence we are conceding that at some point barring a lightning strike I will die from sarcoidosis and that if I continue to decline at this steady rate that point will not be to far off.

So I did just write that at some point I will die from sarcoidosis.  Not the most pleasant of thoughts but if I am to be honest the thought has been in the back of my head for the past year.  I know this post has taken a dark turn of sorts but I wanted to let you know next week I will be my charming, witty, and entertaining self or I might be wallowing in self pity but definitely one of the two.  Last but not least don't cry for me Argentina.

Monday, August 5, 2013

Getting Your Affairs In Order (Part 2)

Telephone meeting with the lawyer was boring and upsetting at the same time.  There is a lot of tedium when it comes to planning your death and that is where the boring kicks in.  The upsetting part is probably not what you would think.  It did not make my death "real" because of all the planning, I have grown pretty comfortable with the idea of dying.  Now don't get me wrong I am not looking forward to my death and I am not excited by the prospect of being no more.  So what upset me?  The questions about living in horrible scenarios.

There are the questions you would expect, if you are brain dead do you want to pull the plug and other easy questions that I had considered before ever seeing the lawyer.  Then you move into when you want to be resuscitated or i.e. your DNR rules.  There are lots of things to consider but I will go ahead and skip to the upsetting things.  Would you choose to be resuscitated if you would live for many years in unbelievable pain?  Now I am oversimplifying this for sake of this intellectual exercise but that is pretty much the gist.

Once this possibility had been brought to my attention it did seem obvious but cut me some slack I am on a lot drugs that effect my brain and I am distracted with the whole trying to make the decisions about keeping me a alive and to have some kind of quality of life.  So would I want to be alive if it would involve a lot of suffering?  It turns out that after this was so initially upsetting the answer was apparent by my current actions and actually I feel kind of stupid.  If you follow my blog there was a post a few weeks back called have you ever put a gun in your mouth? and that post was about being in so much pain that it drove me to seriously consider suicide.  The fact that I am writing this and I did not shoot myself indicates that I would want to live even with suffering that had no hope of end other than death.

That is the boat I am already traveling in.  Could it get worse?  Sure things can always get worse and I am grateful that they are not worse.  I am grateful I have a wife that has stayed with me and given me excellent care.  I would be dead right now if it were not for my wife.  There are two reasons for that, one her care has been the difference on several occasions between me living and dying, two I would not have the will to live if it were not for her and I would have given up long ago.

I look back over this post and it is getting kind of convoluted, not my best work.  I think I am still convoluted in my head about this topic and maybe thats why it comes out convoluted.  Alas stay tuned and maybe before I die this will all work itself out.