Monday, July 29, 2013

Getting Your Affairs In Order (Part 1)

If you follow my blog you know my dad died back in March and that combined with my declining health has finally motivated me to "Get My Affairs In Order".  Just for the record the quotation marks used in the previous sentence are of the air variety.  There are things that I thought would be hard that have been easy and there are things I had not thought about which are not necessarily hard but confusing to say the least.

The actual decisions about what I wanted done with my remains was quite easy.  My dad had been cremated and a big part of that decision was just practical in that he died quite a few states away from his home.  When it came to his final internment it was easy for my siblings and I to just divide up the ashes and kind of each do our own thing.  I think if we would have had him embalmed and kept intact it would have been much harder to divide him.  The convenience definitely appealed to me, for my dad I had a little pendant urn, a small urn for my desk, and a nice full size one for display.  Also I have a good amount that I will have interned with his mother.  One sister had part of him interned in a mausoleum at an Episcopal church in a town he was fond of, my other sister I believe will have some of his ashes interned at a family cemetery.  Cremation makes things easy.

I would like to be cremated in a pine coffin.  I always loved working with pine.  It is a soft wood and it will literally bend to your will.  Easy to sand and easy to finish.  Love the grain some of the best knots I have seen outside of walnut.  Also it will stain easily and take on almost any finish.  Last but not least who can forget the beautiful fresh smell. Now that is wood I can spend all of eternity with.  I have requested that my wife keep my ashes around until she passes away and then have them interned or scattered or frankly whatever as long as they are with her.  Boom goes the dynamite first one down.

Now for the actual service.  As I have mentioned in past posts I am a Christian but not of the proselyting variety.  Funerals are for the living and not the dead and as such I want my funeral held at the religiously neutral site of a funeral home.  I want all my friends regardless of their religion or lack their of to feel comfortable coming to my funeral.  If there is going to be any religious speaker of course I mandate that they would be Christian but I would be fine without any religious presence at my funeral.  Again funerals are for the living and since I will be dead I do not need a sermon or any kind of reassurance in my faith.  I think that my life and the demonstration of my faith through how I lived my life should hopefully serve as beacon to people that are open to having Christ in their lives.

Now do not worry I am still keeping the religion talk to a minimum and in part two of this post we will be discussing more practical legal stuff and of course the food to be served at my funeral.  Both very important topics.  See you all next week.

Monday, July 22, 2013

Remicade continued

I have finished my third infusion of remicade last Tuesday.  Besides a little pneumonia I have experienced improvement in all of my symptoms with one important caveat.  I have experienced an increase in joint and muscle pain.  I have run out of adjectives to try and describe pain and I will not bore you with anymore futile attempts.  That being said what the hell I am I going to say then?

Pain sucks, blah blah blah, pain changes your life, blah blah blah, nobody understands, blah blah blah, quality of life, blah blah blah.  All my posts are stream of consciousness but this one seems to be more stream and less consciousness.  I thought that if the remicade had shown any signs of not working I would freak out.  Remicade is after all the last treatment available and if it does not work that will be that.  Somehow I have gone from being ready to kill myself to some kind Zen place that somehow resembles apathy.

I am still scared of pain and I do not know if I have ever really been scared of death or not.  The fact that I am still scared of pain would lead me to think that I should be scared that the remicade is either causing severe pain or not preventing the disease from causing more pain but I am not.  I am not sure why I am not scared either.  This could simply be today and the massive amount of drugs in my system or maybe I have turned over a new leaf and found apathy?

Friday, July 19, 2013

Chronic Pain (Someone Else's Words)

I am not a big linker.  I think most people can search on the Internet for themselves.  I am not an aggregator after all.  That being said I read this and cried.  It was a moment of release to know that someone understands.  Also it is good advice if you know someone with chronic pain.  Read this!

http://www.wikihow.com/Understand-Someone-With-Chronic-Pain

Monday, July 15, 2013

Things can always change quickly for anyone, but I choose to ignore that.

I have gotten worse and it has been quicker than I thought possible or have ever experienced.  I am the sickest I have ever been with sarcoidosis.  Last week the pain had gotten extreme and I was unable to get enough oxygen even when I was just sitting in a chair.  Your oxygen saturation should at least 88% or you should be on supplemental oxygen.  When sitting mine was 84% and would go down to 71% on just a trip from my chair in the living room to the bathroom.  Having to have oxygen on 24/7 just to survive sucks, I will probably end up there at some point but I will admit it was alarming how quickly I went from being somewhat on the road to recovery and then unable to walk without great difficulty and unable to breath without assistance.  We have added back in my favorite drug prednisone in large doses.  The large doses of prednisone has helped with the pain and the breathing but unfortunately it has not been completely helpful.  I do not wish to alarm anyone or get up on my cross so to speak but unfortunately my condition seems to have become unstable and potentially able to quickly decline.

The point of all of this is twofold.  One I would like to keep my Internet family in the loop and two I may die more suddenly than even I thought possible.  If I do die suddenly I would like all my amigos out there with sarcoidosis to remember that 19 out of every 20 people with sarcoidosis will die from something else.  Just because I shuffle off this mortal coil, that's right I went there, does not mean that you should give up and more importantly you should get as much joy from each day and the people that are presented to you in that day as you can.   

Monday, July 8, 2013

I wish things were the way are on the TV show House

I wish things were like they were on the TV show House, you get diagnosed with a rare disease and of course that may take a while but once diagnosed they give you a cocktail of drugs and you are noticeable better within forty eight hours.  Actually having a rare disease is nothing like that, except the part where it takes forever to figure out what you have.  I have tried many different drugs for this disease, some of them you need to take for six months before you can tell whether they were working or not.  The drugs are of course dangerous and I guess that is reflected on TV, they always say there is a chance that the treatment could kill you.  The way the treatments could kill you is a lot more vague than sudden death.  Below is just the warning on the interaction of two drugs I am taking it is not even their individual potential for killing.  The best part is that the current recommendation is that you should take both of these drugs at the same time if you have sarcoidosis.  Crazy.

 Major Drug Interaction

methotrexate interacts with the infliximab in Remicade (infliximab)

MONITOR CLOSELY: The use of tumor necrosis factor (TNF) blockers with other immunosuppressive or myelosuppressive agents may increase the risk of infections. Serious infections and sepsis, including fatalities, have been reported with the use of TNF blockers, particularly in patients on concomitant immunosuppressive therapy. Agents that may be significantly myelo- or immunosuppressive include antineoplastic agents, radiation, zidovudine, linezolid, some antirheumatic agents, high dosages of corticosteroids or adrenocorticotropic agents (greater than 10 mg/day to 1 mg/kg/day, whichever is less, of prednisone or equivalent for more than 2 weeks), and long-term topical or inhaled corticosteroids. Concomitant use of TNF blockers with other immunosuppressants such as azathioprine or mercaptopurine may also increase the risk of a rare and often fatal cancer of white blood cells known as hepatosplenic T-Cell lymphoma (HSTCL), which has primarily been reported in adolescents and young adults receiving treatment for Crohn's disease or ulcerative colitis. Cases of HSTCL have also occurred during use of these agents alone. Because individuals with rheumatoid arthritis, Crohn's disease, ankylosing spondylitis, psoriatic arthritis, or plaque psoriasis may be more likely to develop lymphoma than the general population, it is difficult to assess the added risk of TNF blockers, azathioprine, and/or mercaptopurine.

MANAGEMENT: Patients receiving a TNF blocker alone or with other immunosuppressive or myelosuppressive agents should be monitored closely for the development of infections. TNF blocker therapy should be discontinued if a serious infection or sepsis occurs. Close monitoring for signs and symptoms of HSTCL (e.g., splenomegaly, hepatomegaly, abdominal pain, persistent fever, night sweats, weight loss) is also recommended during use of TNF blockers, particularly in combination with other immunosuppressants such as azathioprine and mercaptopurine.