Tuesday, April 8, 2014

Doctor Today (Short and Sweet because I am tired)

I have not talked in detail about my current symptoms or what kind of treatments I have been on for quite some time.  When I started this blog my intent was pretty simple, I wanted to tell the story of how sarcoidosis has effected me and by doing so help myself and others.  I thought the blog would mostly be about treatments and doctors with a little pinch of how with the help of my wife and Jesus I managed to keep my head up and keep slogging along with a smile on my face.

At the beginning I kept to that format but over time it has become a once a week journal that whatever is at the forethought of my mind is what gets put down into words.  I have chronic and refractory sarcoidosis so being sick does come up in my weekly foray into the old noggin but it is no longer the direct focus.  When you look at the title and the first couple of paragraphs I know you must be thinking finally he is getting back to some treatment tips and tricks.  That is not the case.

Today I am four years and a couple of months into the sarcoidosis saga.  There are still no drugs approved by the FDA (Food and Drug Administration) for the treatment of sarcoidosis and I have taken all the drugs that are recommended by the experts and that brings us to my appointment today.  Two months ago is the last time I saw my doctor and we had decided that it might be time to get off as many drugs as possible in an attempt to differentiate between side effects of drugs and symptoms of sarcoidosis.

I was disappointed to find out that they were all symptoms.  I am usually not deluded, well at least not about being sick.  My hope was that I was no longer sick and that when we stopped the drugs I would start feeling well, maybe even good and we would find all my complaints were just a horrible set of side effects from the drugs I was taking and that the sarcoidosis had gone into remission.  What did I find at the end of the drug free rainbow?

I found that my complaints are the result of either sarcoidosis or as a yet to be diagnosed disease to be named later.  Things are looking a little dark right now and I would like to inject the light of hope.  I have not given up hope and if anything I am more hopeful now than I was before I was sick.  My wife has held to her wedding vows and stands by me in sickness everyday regardless of the toll it takes on her.  For the record that is not a hyperbolic statement to jazz up my blog post but simply the beautiful truth about the lovely lady that is my wife.

What my wife does would be impossible for me to accomplish and she amazes me daily.  I will talk about my wife more in the future but I must stop now or this post will not be finished today.  I also have some amazing friends and family that on good day wash away the troubles of the day and help to furnish smiles for my wife and I.  I have faith in God and I hope that my life is useful in his plans and I do not foresee that hope abandoning me.  Hope insertion complete, enjoy the light!


The final paragraph is here and I will finally get to my doctors appointment.  I must first reiterate how exceptional my pulmonologist is as a doctor and a person, he is exceptional.  My doctor and my wife are concerned about my quality of life, I think that is because I have indicated my quality of life is low.  Don't get me wrong I have things to live for and enjoy everyday but I would love to be able to go to a museum or a movie without a huge amount of suffering.  I wish that suffering was not the correct word to describe what an outing of any kind brings me but it is the correct word.  The suffering is enough these days that I only leave the house for Mass and doctors appointments.

I was wrong but I swear this is the final paragraph.  My exceptional doctor is going to do some research and try and to come up with a treatment.  He is going to read a lot of papers in medical journals and try to choose the best experimental treatment.  He cares, he is going to read all those papers to help me.  More than likely he will never use that knowledge for any other patient.  That is a good doctor.  I will keep everyone informed of what we are going to try next.  Remember to have hope.  Most people are good and I know God is good and in between those things I just try and have happy thoughts.