Thursday, July 31, 2014

Life in the fast lane.... Oh wait a minute. I need to rest

I am now about 2 months into Stelara (7 weeks, but who's counting).  The good stuff is starting to really kick in, but the lack of stamina is hanging on like a big gooey booger.  I've been an insomniac most of my adult life, but the last 3 years it's been painsonia so there wasn't much benefit to being awake at 3 am when the rest of the world is enjoying the dreams.  Now however I do everything in spurts and with insomnia that works just fine.  The other day I used the inability to go to sleep time to organize my jewelry box, and then when I was awake 3 hours later at 5am I took advantage of the early morning coolness to clean my pool.  Of course by 8 am I was ready for a nap so 2 more hours of sleep and I'm raring to go for another 3 hour spurt of productivity.  I've had this pipe dream of being able to go back to work someday, but I highly doubt I will find an employer that can appreciate my unique schedule.  I also wonder if I'm ever in a relationship that I live with someone how they will be able to understand my night time activities.    ANYWAY, I'm medicated and getting side tracked.  Back to Stelara progress.  My skin had a mild plaque flare after the 2nd dose, but not enough that most people who weren't me would notice it.  I also had some pustular flares on my hands.  One blister in particular is still hanging around.  It will come to the surface, but angry and tender, fill full of fluid and then shrink again and become a hard lump.  It's in hard lump stage today, but I see fluid beneath the lump so it will be filling back up again soon.  The other few spots either ruptured quickly and turned to cheese grater skin or just reabsorbed nearly as quickly as they appeared.  My pain is the other big improvement.  I have dropped to half dose of my pain meds and don't need them every day on the clock to stay around a 6 in the pain level (I know the stupid pain rating system).  To put it in words at 6 I can think, but the pain is most definitely there and a constant nagging, but the nagging I can dull out if I work at it.  Once it gets to 7 I'm no longer functional and there is no way to be functional without pain meds.  Then even with pain meds it's more of a resting functional because the pain is still there with the inflammation, but it's no longer consuming my world so much that I live in the fetal position.  I have noticed that my pain is still very much affected by barometric pressure, and since it's monsoon season here in the valley of the sun there's a lot of barometric changing happening.  I moved to Phoenix because it is a much more stable environment barometrically 10 months of the year.  I'll have to wait till September gets here and the weather levels out again to really see where I am in the pain realm.

One thing that is not a good thing is that my brain fog is worse than before.  I've had dr's make snide comments about how they don't know how I'm standing straight with the levels of narcotics I'm on let alone that I can talk straight.  Now I'm on less narcotics than I've been on in 3 years, but my brain just doesn't function.  My family is always either finishing my sentences or doing that thing people do when people stutter that is them willing a word to come out, but trying to not be insensitive about the stuttering.  If I had to do a complicated math problem (which happened daily when I worked) to save my life I'd be dead.  There is just no way I have the brain stamina or focus to do that these days.  I'm not getting lost in my house, but if it gets much worse I'm going to need to leave sticky notes on the walls to remember where the bathroom is.  I'm sure I will find a way to adapt, but as many of you who have brainfog know it is a truly frustrating part of the disease and medication side effects.

I've been working on a few non Stelara blogs because I'm sure you're as tired of hearing about it as I am of talking about it, and next week I'll start publishing them.

Hope you all can find a safe haven from your pain and find your joy anywhere you can.

~Heather.