Wednesday, August 22, 2012

I got a new drug.

So in the last 24 hours I have gotten the Simponi approved and received my first dose from the UPS guy.  I will be taking it tomorrow so fingers crossed!  I also got my FMLA approved.  Now I will probably lose about 20% of my income because I don't get paid for FMLA days, but I also won't get fired for my absences.  80% of something will always be better than 0% of nothing, right?  Also if I'm making 20% less  my kids might actually qualify for some federal student aid.  LET'S GO PELL GRANT! 

This week has been a pretty moderate pain week thankfully.  I haven't needed a vicodin since Monday.  Now this isn't to say that I'm not in pain.  It just means my pain levels are manageable without narcotics for now.  Something I have found people who don't have chronic pain can't wrap their minds around is how people with chronic pain perceive pain.  I personally haven't had a day without pain in so long that I can't remember what it was like to be pain free.  People in my life will frequently ask me if I'm in pain.  If I answer honestly my answer would always be yes.  What doesn't factor into the black and white answer is the fact that when you have chronic pain you learn to have a level of "acceptable" pain.  It's still pain, but you don't really register it anymore unless you focus on it.  It's like if you work in a building that has a piece of machinery with a constant hum.  Do you hear it?  Yes, if you think about it and acknowledge it you hear it, but on a day to day basis you learn to kind of ignore it and it just becomes that white noise you don't really hear anymore.  This is part of the reason that having mental coping mechanisms can be so important.  It can be a quick flush down the toilet of life if you let the pain be a focus for too much of the time.  It can become all consuming.  It can drive you to being mentally ill on top of physically ill.  It's a delicate dance to manage your pain, your mental health, be mindful of your medications and their side effects and living a somewhat normal, all be it adjusted, life.

As I've said  before reading is one of my coping activities.  I also practice that deep breathing "in through the nose, out through the mouth" used in both Lamaze and yoga.  Funny both those things use that breathing practice as my experiences with both have had extreme and painful results afterward.  Anyway,  know your comfort positions.  Mine change over time and depend on the particular joints having a bad day.  When it was just my hips I would sit kind of Indian style and then lay back.  This stretched out my hip flexors and forced my back into a more comfortable arch.  I could sit like that and day dream for a good hour at a time.  Yes I looked a bit crazy dropping down on my coat on the floor of the airport, but it sure felt a lot better, and those long boring layovers were much more tolerable.  Laugh.  This one is a universal mood enhancer.  I'm blessed with the ability to find humor in the not humorous.  Much to the dismay of many people around me who find it impolite, but none the less there has to be a reason for inappropriate humor.  Maybe my arthritis is the reason.  No matter what's going on I can usually find something humorous and inappropriate to say or think.

So to end today's blog I'm asking everyone to keep their fingers crossed that not only does Simponi help my arthritis and my psoriasis, but that it doesn't bring on the side effects from the depths of hell.  I'll take a few minor ones, but I'd rather not gargle glass, be bald or get pneumonia.