Life without Facebook

It's been a few days since I deactivated my Facebook account to focus on NANWRIMO this month.  I will admit the first day was tough.  Especially in first thing in the morning.  We get so numb to how connected we are to our digital online presence that until we aren't plugged in we think it's not so bad.  I knew I was on a lot.  It's my connection to a lot of the outside world.  The way to stay in touch with and part of my friends' lives who live all other the country and world.  How I communicate with the friends I have developed that are in my favorite PsA support group.  How I am notified of events with family, friends and community.  It's basically my contact book, calendar, and communication with anyone important in my life.  Not to say it's the only way, but it's a main one.  I would check it first thing in the morning before I even had coffee/tea in hand.  It didn't dawn on me until after I had deactivated it that it was how I kept track of so many events.  I've had to message several friends to get reminders of when things were happening so I could put it on my appointment calendar.

It'a been 5 days now and it is getting much easier.  Most the time I don't miss it.  Late at night when I would be awake IMing with my other insomniac friends I'm feeling a bit at a loss as to what to do with my time, and since most my games are Facebook attached I don't have those time wasters to occupy my brain when it's not being cooperative for anything else.  But when it's all said and done I'm doing pretty well without it.  December 1st I'll be back on it though.

I am not doing so well already with the whole book writing thing.  The first day of writing and I've been gallivanting around with a friend.  I think I'll work on it some after I post this blog though.  It's only 8 at night so I have 4 hours of the day left to get my shit together.

So off I go to try to get my thoughts in order.  Happy Dia De Los Muertes everyone!  Say a little hi to those you love who have moved on.  Have a great week!!

~H

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!!!

~H

Why granny what large teeth you have.....

Once upon a time is the basis of every great story.  It leaves the promise of fulfilled fantasy, the threat of unknown horrors, and the potential for the illusive happy ending.  Most of us were at some point influenced by these fairy tales masked in a bit of violence and despair.  The dream that even when the big bad wolf eats our dear old granny and uses her as a granny suit ala Wild Bill of Silence of the Lambs (I wonder if the wolf insisted on granny putting the lotion on her skin with threats of a hose down), that in the end good and beauty would prevail and the big bad wolf would be slain for the peace of the world at large. 

Living with an immune disease is sometimes like running from the big bad wolf every moment of your life.  The only difference is the illusive slaying of the evil beast is truly a fantasy most of us dream of, but have little realistic hope of ever seeing in our lifetime.  I know many like me follow the medical news in hopes of that silver bullet that will turn our nightmares of drooling snapping jowls and yellow eyes called immune disease into the “normal” person we once were, but without the dreaded result of killing us in the process.

The commonality of fighting immune disease with fighting monsters in stories seems very real to me.  Every new treatment holds so much hope of releasing me from the claws of the monster and freeing me to forever after in blissful normality, but in the same breath I wonder which bullet will be the one that brings my death or further infirmity.  Which one will cause a severe allergic reaction (as many have luckily not fatally), which will be the sea witch’s curse which allows me to walk and dance on land beautiful and whole only to have it wrenched away when the time has expired without my truly bestowing the adequate gift of payment to the witch and not only returns my scales, but plunges me into depths of pain I had happily forgotten existed. 

Currently on Stelara I thank the pharmaceutical white knights every day for the relief I am having even on days when relief is illusive and the white knight somewhat resembles Don Quixote jabbing at leering windmills  because I know, or at least I pray, that the appearance of the dark shadow that is my wolf will again retreat soon.   Yet with every bad day I wonder and fear if this is the time that the beast has won.  The day when my body has finally been overpowered once again by the aggressor within never to emerge somewhat whole and to outer appearances unscathed by the darkness that lurks within.   When will the day come when I return to the waiting game for the next valiant hero to attempt to slay my dragons of pain and disfigurement that lurk in my core through to the coding of my being?  The who I am atomically with its flawed and self-destructive DNA?  When will the dragon really win or is there truly a hope of slaying the beast without being eaten whole in the process?

In the core of my being I do not believe I will ever see a cure for myself, but the true fairy tale for me that holds a glimmer of hope is that the next generation will find the dragon slayer and that my generation will be the cattle fed like sacrifices in the process.  I am at peace with that as long as my children and grandchildren and their children have hope of being able to never live with this torturous existence.  I am a wasted rescue at this point because too much damage has been done, but I am not a wasted life.  I will proudly stand and stare without fear at the beast and let it slowly consume me if it means my failures help provide successes for our future.  Now this doesn’t mean I am lying down and waiting for death.  I will fight kicking and screaming, likely causing myself more damage and pain in the process, prolonging death at the jaws of the monsters as long as I can.  I am not built to surrender.  I am built to fight and claw, make as much noise as I can, cause as much damage to my aggressors as I can and when I go we will both show the scars of our fight.   Accepting I am the sacrifice to progress doesn’t mean I am a lamb.  The best meals are meals well won so come on wolf, dragon, sea witch, come and have a taste and may I leave a bitter taste in your mouth because some day my kind will slay you.  It may not be me, but someday my psoriatic siblings, our offspring and those who fight for and with us will win.  We will have you crumpled at our feet and you will be relegated to the things of fairy tales.  

We will have a happily ever after!

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.

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.

~Heather