Saturday, January 31, 2015

Sometimes it's the little things.

A while a go I was "normal" people sick.  You who have chronic illness/pain know what I mean.  Above and beyond YOUR typical yuk you have a virus/infection/one of those nasty bugs that everyone complains about at some point or another.

I have a picture my daughter took after my last surgery several years ago.  I was on the couch resting and she'd brought me my teddy bear Theo.  This bear is nearly as old as I am and I won't admit to the exact number, but it's over 40.  It has been around the world with me, been with me through 2 births (without drugs), 3 marriages and divorces, every major life moment for most of my 40+ years, and because he's my oldest friend I keep somewhere near by at all times.  At any rate she'd brought me my Theo to comfort me and I dozed off with him curled up in my arms and she took a picture.  I now put this picture as my Facebook profile picture whenever I'm "normal" sick.  Something like hanging a sock on your dorm room door to let your room mate know your "busy", but letting my friends and family know I'm not feeling up to being social and likely passed out like in the picture is my status.

Tonight I'm feeling a bit stressed out for no apparent reason and decided to take a bath.  While in the bath I started thinking about the last time I had this picture posted.  Someone who shouldn't have access to my profile had seen this picture and was publicly making fun of me because of this picture and how it's immature and attention seeking.  Now I really could giving a flying shit about this person's opinion of me, but for some reason sitting in my bath this came to my head.  Not because what this person had to say affected me, but because I wondered at what point do we lose a level of innocence in what soothes us.

I guess after almost 2 decades of dealing with Psoriatic Disease in it's varying degrees of severity, especially the last 4 of extreme decline, that I've learned to see the beauty in the simplicity of innocence and accepting the beauty of it.  When nearly every part of your body hurts and someone rubbing your ear lobes is soothing (and also one of the few places that doesn't hurt) is this infantile because it's how I soothed my child when she was an infant or is it beautiful in it's simplicity that another human can look to find any small way to soothe you when you are in pain?  When you miss your children and your arms ache from their absence is a pet or teddy bear childish or the act of filling a loss, even temporarily, with something that is familiar? Or in the case of my picture when my child is looking for a way to soothe me after surgery by giving me something that soothes her.  All these innocent simple gestures are things I've learned to see as what they are.  Beautiful, tactile, and comforting moments of calm in a world where life is chaotic beyond just the daily grind and typical life stresses.  I for one will take those moments anywhere I can find it.  Sometimes the most simple, innocent action is the action most needed to find that peaceful calm place above the pain, above the worry, above the anger.

I guess the point of my rant after my bath is to remind you all that no matter what anyone thinks of your soothing habits don't let anyone jade or tarnish them with their bile and ignorance.  In truth people who are so wrapped up in their own opinions are truly miserable in themselves so there's no need to use them as a mirror.  Grab your teddy bear(or whatever your totem is) and smile as you let the feeling of calm that the tactile memories of it's soothing you takes over and keep going to your place of peace if even for a few minutes.

As for Theo he has been put away for a few years.  He's safely stored for later emergence once the threat of chewing puppies, attack cats, and children who try to smuggle him away for their own soothing rituals has passed.  I will not disclose his location as my daughters occasionally read this lol.

For now the picture of him cuddled in my arms while I sleep is sometimes enough to bring a smile to my face because during many times of crisis he was my anchor and will always be special to me.

Thursday, January 1, 2015

Happy New Year!!!

Yes I know I've been absent for more than 2 months, and I apologize.  Today was Stelara day and since I'm in bed listening to what I hope are New Year's fire works with the post Stelara flare and headache I figured I'd go ahead and say hi to everyone.

It's been a roller coaster of a year for both my health and my personal life.  Part of my absence has been the end of my 4 year relationship with someone I still care deeply for, but well, stuff happens.  I didn't want to come here and use the blog as a personal bitch and moan forum with passive aggressive nastiness so I have kept to myself for the most part.  The other part of my absence has been that my laptop is in need of updating (it decided to take a 5 minute thinking break right when I was typing this)and since my patience levels are at about zero I didn't want the aggravation it brings to me.  Stelara has made a lot of improvement for me.  My skin is nearly totally clear, out of a 6 week cycle I have huge improvement in functionality for about 4 weeks, but I'm pretty sure I'm still getting progressive damage happening especially in my lower back region and my left shoulder.  I see my Rheum on the 7th and plan to discuss options with her from going back to the nutritionist to tweek my diet, start PT to attempt to strengthen my core and the muscles around my shoulders and possibly getting some massage therapy, as well as increasing Arava.  The Arava is standardly only given at one dose level, but I found a study that they did see improvement in RA patients with an increase so I will be discussing with her if an increase might be worth the risk to try to boost the Stelara impact and longevity  of efficiency in each cycle since it really starts waning about week 8 of the 12 week cycle

So there you have my life for the last months.  Not really much to report.  I have tried to forward new information on meds and studies to the Sausage Toes and Scales Facebook page, but even that has been pretty neglected.  Hopefully I'll feel inspired and get back on here on a regular basis, but in the mean time may you all have a safe and joyous New Year!  Here is hoping that 2015 brings us that much closer to a cure for Psoriatic Disease.