Monday, February 25, 2013

Fear of the Apocalpyse

I only have one reaction to being afraid and that is anger.  I am angry that I need help.  I know it may seem sick but I used to imagine a post apocalyptic world, not necessarily zombie infested but probably.  I had developed skills and plans for how I would survive.  I would have my little fortress with windmills and solar panels.  Now I am sick.  If society were to collapse I would not be able to get the drugs I need to live.  Now that is abstract and now for the concrete.  I woke up this morning and you could say I was having trouble being ambulatory,  so much so in fact I would not be able to escape even one slow moving zombie.  Now I am in the position of hoping there is no apocalypse, a position I am not comfortable being in.   

Thursday, February 21, 2013

Update about my health

I have not updated lately on how I have been doing. Frankly that was because there has not been any good news to share and I do not like to focus on the negative. I have chosen to just been trucking along. The effects of the illness had been creeping into my life, I could no longer drive a car, I could not walk from one room to another without needing to rest and catch my breath, and could no longer completely dress myself. Now that the depressing back story is done here is the good news, today I had to go to the hospital for some blood tests which is something I do every two weeks. My wife comes home from work and drives me to the hospital. Two weeks ago I felt like I was going to die by the time I made it to the lab, I should have used a wheel chair. Now this time it was very unpleasant and my wife still had to drive me but I did not feel like I was going to die and that is progress. Every day is a gift treat it as such, I know I do.

Monday, February 18, 2013

The importance of your Narrative of your sickness

Doctors are supposed to get a narrative of your illness when you are first seen.  There are things that can be revealed by how and when your symptoms came about that can not be revealed by tests or examination.  I wish I had known this when I first became ill.

After the initial evaluation determined that I was not dying quickly and we could all take a breath I was lucky that the first doctor that was in charge of my care took the time to get a narrative of what and when things had happened.  Since then I have seen ten other doctors over the past three years for various problems that where outside the prevue of my main doctors specialty and even a second opinion at a world renowned hospital.  Few of these doctors took the time to get a narrative.

There seems to be a new boiler plate theme to appointments now.  The doctors appear to be checking off boxes on a checklist as opposed to actually getting the story of how you became ill and what may actually be the problem.  If the doctor will not listen to your story and interrupts you do not be afraid to speak up and advocate for yourself.  Now this is not a license to be douche bag, if you treat your doctor like crap your concerns will definitely not be addresses.  Ask open ended questions like "does that explain my toe pain, shortness of breathe and headaches?" and in my experience it helps if you come off as though you are stupid and really need it explained to you.

If the doctor can not explain what causes your symptoms that is a warning sign.  If the doctor will not admit that he can not explain some of your symptoms get up and leave and tell them you would like to not be charged for the appointment.  There is one great exception to this, if you have a rare disease and you are seeing a doctor that has written a text book about your disease it might pay not piss him off but barring that if they will not be honest with you there is no point in seeing that doctor again.

Monday, February 11, 2013

Asking for help

The first thing to remember is most people suck.  Now I know this is not a bold statement but for me to continue we must all start from the same place.

When I first became ill in this age of Google I spent a lot of time reading on the internet about sarcoidosis and other general articles on how to handle being sick.  It is a rare disease and hence there are not a lot of facts to absorb about the disease specifically.  I then moved on to the generalities of dealing with a chronic debilitating illness.  First thing on the list is be willing to ask for help because people are willing they just do not know what to do or so the articles said.  In truth when I have asked for help most people have let me down.

Now to end on a more positive note, there are several people that have been wonderful in their unsolicited help.  I must admit I am afraid to ask for help anymore because I would like to still think the best of people and not be let down.

Monday, February 4, 2013

Watching Movies

It is coming up on six months since my home confinement started and things have settled down to a routine.  There are variations that arise, there are good days and there are bad days.  One of those routines has become watching movies.

Before I became acutely ill almost every Sunday my wife and I would go to the first showing of the day at our local multiplex.  The thing about a Sunday morning matinee in Utah is the theaters are empty even on opening weekends.  I remember seeing Harry Porter and only sharing the theater with a dozen other folks.  The whole reason we would go to the Sunday morning matinee is to avoid people.  Now after six months of isolation it is hard for me to think that I used to avoid people.  I think that might be irony.


I miss the sweet greasy popcorn and Dots.