Monday, October 26, 2015

I'm BACK!!!!!!!

Well I have had a very extended hiatus.  Partly because well life.  The other obstacle has been my computer.  I have a netbook with a condensed keyboard and it was just too much for my wrists and swollen fingers.  It was also having some operating issues so now this has been remedied with a full sized keyboard, 17 inch screen (because I'm fairly sure I'm going blind too), and the keyboard is under-lit with LED lights that change to various colors of the rainbow.  This last feature has it's negative sides as well because I find myself fixated on it when I'm on my pain meds and nothing is going to get done.  I can stare at that thing for HOURS.

So enough with my excuses.  I guess we can do a life update since it's been (ahem) 8 months since I've been blogging.  I have been declared a failure on Stelara almost exactly a year after starting.  The rebound flare was not as bad as some I've had, but it was no fun.  My last shot was in June.  I was already in flare and just never came out of it by the time I'd seen my Rheumatologist in August.  My skin isn't nearly as bad as it has been in the past, but it is slowly but surely degrading.  I've already started getting the winter crack and here in Phoenix it's been in the high 80's (SO not winter weather).  My inflammation however is the real problem.  Sausage toes and fingers  have started to reappear as has the Claw.  My Dentist's assistant saw the Claw when I stopped by to make an appointment.  I also had my cane with me that day, and he was shocked at the decline since I'd seen him 6 months earlier.  I also am having the oh so wonderful wandering mystery pains.  You know the ones.  They just pop up out of no where and you know you didn't run a 10k or lift dead trees in the last few days so there is no reason to feel like elephants have been river dancing on your body. At any rate my body is back to it's old tricks with a vengeance.  It has mellowed a bit this month, but mellowing means it's back to my good ole normal crappy.

My current management program is lots of rest and pain management, but the Rheum has said she would approve Otezla.  I'm a bit hesitant as it's fairly new on the market still, but I have joined an Otezla group on Facebook.  It looks like there are quite a few people on there who either were on the trial or got started on it immediately after it got FDA approval so there is some good historical use information there.  I will probably lurk and learn till around Thanksgiving and email my Dr my decision so there's time to get whatever pre prescription tests done.  It also takes the VA a while to decide to give in and approve the funding for newer drugs.

I'm not sure what direction the blog will go in for the near future.  I get sick of hearing myself whine so I know y'all don't want to hear it.  There's very little medication wise happening in the US right now as everything new is in trials.  I may do some on diet, distraction, and such, but I know we all get that from everyone who has a cousin's uncle's dog sitter's sister's landscaper that magically healed themselves with blah blah blah.  If anyone has requests I'm happy to listen, but can't guarantee I'll follow through.

One thing I do want to let y'all know is that 23 and Me has had the FDA limitations lifted and they are doing medical DNA coding again.  It is very costy, but I'm hoping that they will have a holiday sale because I want to get my parents and kids tested.

So for now I'll say adios.  I hope everyone enjoys their Halloween!!!