Wednesday, May 29, 2013

Decline and Death (Sorry for the delay will try to post on the Monday schedule from now on)

It has been three years and three months since I was diagnosed with sarcoidosis.  During that time there have been ups and downs but unfortunately the overall trend has been one of decline.

If anyone is honest with themselves things start to decline when you turn thirty whether you are ill with a rare disease or not.  My father passed away suddenly two days after my fortieth birthday.  He had certainly declined since he was thirty but he was still independent and able to take care of himself for the most part.  In fact he was on a road trip with a girlfriend when he died in a Best Western Bathtub.  Drowning certainly is a rough way to go but I am glad he never had to rely heavily on anyone for his daily needs.

I have two sisters and they have both have taken the death of my father hard.  I certainly was upset to hear of my fathers death but it did not destroy me in the way it has my sisters.  I was in the emergency room when I received the call from the girlfriend that was with my father when he died.  I will post another time about the specifics of why I was in the ER.

Something that I do wonder about is why I was not necessarily able to handle my fathers death better than my sisters but that I was able to keep up with the day to day of life.  I think that when someone close to you dies there is a shock that they will no longer be around and all the emotions that come with that but also you are forced to face your own mortality.

Before my father died I had already been forced to face my own mortality.  There are lots of way you can die from sarcoidosis but they are all maybe's.  It can effect this and it can effect that, blah blah blah. About 2 years ago I found out that I had pulmonary hypertension caused by sarcoidosis and all the sudden one of the maybe's became a reality.  Pulmonary hypertension is always fatal but initially I was able to avoid facing my own mortality.

Pulmonary hypertension when caused by sarcoidosis generally moves with the disease and although it is fatal I thought we could control the sarcoidosis to the point where I would live long enough to die from something else.  Last September when I was finally unable to work anymore I was no longer able to deny that despite the ups and downs that I was overall on the decline at least as far as my health goes.  Now it is plain to see all things being equal I will probably die from sarcoidosis and if things continue on at the present rate it will not be some abstract distant future but sooner than later.

We are all born to die and I am no longer ignoring that fact.  In the coming weeks I will begin Remicade which will literally be the last ditch effort to restore some quality and length to my life.  Regardless of how well or poorly the drugs work I will be aware that my new friend the end is never  far away.

Friday, May 24, 2013

Still Sick, Still Alive

I originally started this blog for two reasons.  One to give myself a forum where I could vent and just spew what was on my mind.  Number two I thought that perhaps sharing my experiences with sarcoidosis I could help other people that are newly diagnosed.  There was a blog I found helpful when I was first diagnosed, it inspired and informed me.  The writer was more articulate than I am and the only reason I continue on with hope of helping people when he had done it better is that he died and I hope not to die (at least not to soon).  I remember how crushed I was when I read the post from his wife saying that he had died.

I have been side tracked by my dad's death but I promise to return to chronicling my experience with chronic illness.  At the moment there is not any good news to report other than I am still good looking and still always hopeful of what the future will bring.

Friday, May 17, 2013

Good things about my dad being dead!

1. I no longer have to try and explain what the "cloud" is.

2. No longer need to clean viruses received from emails promising naked pictures of friends.

3. I will not receive in drunken calls at three in the morning from the small towns in England

That is about it, it turns out there are not a lot of good things about my dad being dead.

Monday, May 6, 2013

Doctors who really care (well at least their office)

I have been switching some of my doctors, I can no longer drive some I am trying to consolidate everyone close to my house.  One doctor's office refused to send test results to my new doctors office and said they were going to cancel all my prescriptions.  I asked them if it was punitive to cancel my prescriptions before I even have a chance to see my doctor so then I would not have drugs I needed.  I then said if they can't send my results to my new doctor they were required by federal law to give them to me.   They then became very friendly and said they would not cancel my prescriptions until I could see my new doctor and they would have those test results in the mail today.  It is good to know that they were really concerned about my health and making sure I was okay.