Saturday, May 31, 2014

Stelara approved.

The pharmacy says I am approved for a trial of Stelara.  Not sure what that means, but I'm guessing that they aren't going to give it long to do it's thing before deciding it's a failure.  Still waiting on the Dermatology department to "map" my psoriasis and the Rheumatology to teach me once again how to jab a needle in my belly fat.    So begins the journey to the last leg of the pharmaceutical trip for a while.  Work or not work this is the last option until something else gets approved.

I also start moving Saturday.  I have found a house with a pool.  The pool was #1 on my must have list.  Swimming is about the only real exercise I can do consistently, and my psoriasis improves so much from the time in the sun and chlorine.  Last year my skin nearly cleared up from being in the pool almost daily.  Plus being in the water even if I'm not doing enough actual swimming to be considered a cardio work out helps keep my joints more fluid.

Soooo forward on the march continues.

Happy June eve!


Monday, May 26, 2014

Here we go again.. on to Stelara (fingers crossed)

So I announced it on Facebook, but I'll let everyone here know as well.  The Rheum has put in the request for me to start Stelara.  It could be a bit before this actually happens as I will only be the 2nd patient on Stelara at the Phoenix VA, and the 1st for Psoriatic Arthritis. Because of the cost it seems the pharmacy is quite reluctant to authorize it unless all other options have been exhausted.  Since I am one of the lucky ones who have gone through EVERYTHING else on the Psoriatic disease menu I get to yell BINGO now right?

One thing that has been getting in my crawl this week is thinking about my liver.  I find that adding ibuprofen, at night especially, helps my inflammation and stiffness in the morning.  Now logic would seem to go that with taking so many meds that are so harsh on the liver finding ways to minimize them would be the thing to do.  I asked my Rheum to put a recommendation to my GP who acts as my pain management doctor to switch my narcotic from lortab (hydrocodone/acetaminophen) to the same dose of narcotic with ibuprofen in an effort to lower to toll on my liver.  She outright refused because she said my liver numbers have been good (I've seen them and they are in the good level, but very close to the high end of good) so she sees no reason to make that recommendation.  Now I realize I'm not a doctor or even a heath care professional, but I try to employ common sense and proactive behaviors when it comes to my disease.  Knowing that at some point my liver is going to say enough is enough is a reality.  Extending the life of that organ when it's health is a determining factor in my receiving many of the treatments to treat my disease would seem proactive to me.  SO telling me that because my numbers currently fit in a pretty little box right now is the reason to not be proactive in minimizing the abuse that organ is taking seems to be crazy talk.  I know my dr's are overtaxed and their priority is to attempt to fix what problems I have right now (lord knows I have enough things that need immediate attention), but I hope to live in this body for many more years even if it means living with scaly skin and harassing the grandkids and chasing hot young boys from my wheel chair.  I can live with Psoriatic Disease, but living without a functioning liver is quite another thing.

It makes me wonder if maybe as a community we need to start encouraging big picture care with long term in mind with our physicians.  The treatments are slowly killing us often faster than the disease.  It's like a vicious circle.  I know it isn't just psoriatic disease that faces this challenge.  Many of the immune diseases have the same treatments.  Are we putting off pain, deterioration and ugly skin for a generation of people who need to have will need to have extensive care for liver dysfunction or failure? As many of you know this is the type of circular thinking that keeps me occupied when I'm having insomnia or painsomnia (which is frequently as you know lol).  For more information on liver disease and it's causes and treatments here's WebMD's information on liver failure.

I hope you all are having a peaceful Memorial day for those of you in the US.  Being a Army Veteran myself I spend this day pretty isolated and quiet.  Bless all of the service members who have lost their lives for our country, the ones who keep living in war even once they've come home, and those of us who will pay for the rest of our lives physically for our time serving our country.