Monday, April 3, 2017

Here Comes the Sun

The heat has been arriving early here in the valley of the sun.  We had 10 straight days of 90F in the month of March and it's just way too soon for that nonsense.  My psoriasis has always been classified as severe both because of coverage and severity of the plaques and cracking, and I have 3 types of active psoriasis (plaque, inverse, pustular) at any given time.  Right now I would consider it moderate personally as even though I have severe coverage, I have minimal cracking, itching and scale build up, and my pustular is keeping to a few small blisters on my palms and feet that haven't affected my ability to walk or use my hands.  This time of year is when the ramp up of advertising starts up about how we don't have to be embarrassed by our skin if we would just get this medicine or use this cream. Maybe this special frequency light therapy is all we need to rid our world of the plague of scales and itch.  I understand the drive of these commercials, but they've always rubbed me wrong.  If it was oh so easy why aren't we all in remission and running around in shorts and tank tops playing golf and shopping?

I always thought I was pretty ambivalent to other people's opinion of my skin.  I didn't go out of my way to hide it, or so I thought.  When I started this blog it dawned on me that maybe I wasn't as ambivalent as I had convinced myself I was.  In fact maybe I am a huge lying hypocrite especially to myself.  When I worked it was in a lab that was always around 65F.  This meant that even when it was 100F+ outside I was fully covered in long sleeves, long pants, closed toe shoes.  All my spots were covered and I told myself it was because it was cold in the lab. I even bought shirts with extra long sleeves so I could cover my hands past my knuckles which incidentally have usually been my most plaqued and cracked area.  That was in my head because my hands were cold, but really if I'm honest with myself was to pull the sleeves past the ugliness.  Really lets be honest those long sleeve shirts from Target really aren't thick enough to help heat my ice cold circulation challenged hands.  On hind sight I wore these clothes ALL the time, not just at work.  We tell ourselves a lot of little lies to convince ourselves we aren't as vulnerable as we really are.  Maybe I'm not as bad ass as I thought I was.  I then decided to stop hiding.  I'd go out in shorts and a tank top and let my freaky psoriatic flag fly.  The people staring wasn't too bothersome.  I've been stared at my whole life for one reason or another, but the people stepping away after they stared just pissed me off.  Yes most are trying to be polite by not asking uncomfortable questions, but damn it  ask me and I'll tell you I'm no threat to you.  I'm not contagious.  In fact if I am on DMARDs or  biologicals you are probably much more dangerous to me with all your germiness and poor hygiene than I will ever be to you.  I swung so far to the other side I would often embarrass my oldest because any interaction with people at any public place became a teaching opportunity.  I was like the missionary of education for the Psoriatic congregation to the ignorant and needing to be educated public.  I'd wear shorts when it was clearly not short weather just to get people to say something.  I've never been a halfway girl.  If I'm going to jump in it will be like a bull in a china shop decency be damned.

Today I've mellowed a bit.  I still pull my long sleeves over my knuckles, but usually it's because they hurt from even change in temperature in the air.  I will however be wearing the shortest shorts my 45 year old ass can carry off in public with my leopard spot scales out for all to see.  I wear flip flops and put my feet up where people can't help but see the cracks and scales on my perfectly manicured feet even if those colorful toe nails are missing a nail or two courtesy of psoriasis under the nail bed. I wear my bikini that shows the inverse psoriasis in my belly button and under my breasts.  I still get the looks.  I just don't feel like I need to explain myself if someone doesn't ask.  I will smile and carry on living my life as best as I can spots, cracks, scales and all.  I'm not totally impervious to bouts of self consciousness, but I am at least honest with myself that I'm human. That means on days I feel strong enough to look past the stares and comments then by God I will.  It also means on days I'm feeling especially self conscious about my appearance that that is ok.  I would have those days with out Psoriasis.  All of us have insecurity and we learn to live within our perceived weakness.

I don't know if there is a lesson to be learned from my rambling, but hopefully knowing that even those of us who post pictures of our scales on the internet have times of insecurity, and that's ok, that you are not alone in how you feel about your Psoriasis.  We all want to find that miracle drug that will give us remission.  We all want to look in the mirror and not see scales and scars.  We all have days when looking in the mirror just isn't going to happen.  That is OK.  Each day is a new opportunity to love ourselves in what ever incarnation we are in on that day.  IT WILL BE OK.

Wednesday, March 15, 2017

Here we go again.... and WHEEEEEEE

I'm ready to call it.  Otezla is in it's death spin if it hasn't reached total shit can status.  I made exactly 1 year.  Seriously it was on day 366 I woke up and I swear I heard those pesky ninja ballerina elephants stampeding out of my room and leaving me feeling like fresh road kill.  Well road kill undoubtedly feels better because well, it's dead.  It's been a nice break from the stampede.  Sure there's been days that I had a duo or trio of elephants tap dancing on my joints, but not the whole damn herd.  They'd gone on vacation for the most part.  Oh well, it's not like the first time or the last I will be at this point of fun at the circus that is Psoriatic Arthritis.  My beloved super power/kryptonite wouldn't be doing it's thing if it wasn't keeping me on my toes.

So as I've officially failed all TNF~Alpha biologicals and DMARDs approved by the FDA at this point it's time to research the newest greatest best thing since sliced bread options.  I don't know if I mentioned this in the blog, but I reached toxicity with Lefludemide in October so that was my last DMARD option.  I shared it on the Facebook page, but in all honesty it was one of the most miserable not pain related experiences I've had in a long time.  You think opioids make you constipated you've never met the med that flushes Lefludimide. ANYWAY If you want to know message me and I'll be happy to share the misery that is that awesomeness of torture.  Point being I am out of DMARD options.

So here are the options, drum roll please......
Cosentyx. FDA approved for both Psoriasis(Jan 2015) and Psoriatic Arthritis(Jan 2016)  This is a IL-17 inhibitor.  The newest trend in biologicals and the first to target this particular protein.  It is also approved for  Ankylosing Spondylitis.  It is a monthly injection with a loading cycle of 4 doses spread a week apart and then every 4 weeks after that.  It seems to have all the typical horror story reading when it comes to potential side effects and death.

Taltz: FDA approved for Psoriasis (March 2016) in Phase 3 trials for Psoriatic Arthritis with positive indications.  This option would require bringing Dermatology into the mix until it is approved for PsA.  It is also a IL-17 inhibitor.  Loading schedule is a double dose at day 0, then regular dose every 2 weeks through week 12.  Then standard dosing of every 4 weeks after that.  Again pretty standard potential side effects and maybe death.

Siliq: FDA approved for Psoriasis (Feb 2017). Another option that would require Dermatology cooperation.  Another IL-17 inhibitor.  Dosing is injection weekly for first 3 injections and then every other week for normal dosing.  This one has a black box warning for suicidal ideation and behavior.  Beyond that side effects are similar to the others.  No current information on FDA trials for PsA.

There you have the options and a little info on the newest meds in the last year that are not listed on the other medication blog posts.  I see the Rheumatologist Friday for our little come to Jesus powwow.  She always loves when I get to this point. If anything I have some hope that with it being a totally new inhibitor that is really focused on Psoriatic disease that possibly it will be my miracle.  I could use a few or 5 or 10 years on a steady pharmaceutical regime.  

One final note.  If any of you decide to take Siliq or Otezla both have warnings for mood altering from mild to extreme.  Please be aware of your emotional state and health at all times, but especially when taking these meds that have increased potential for issues.  I have a signed medical release in my file that if I am acting in a way that is dangerous to myself or others I have 3 designees who have authority to commit me for observation and treatment without my consent.  I trust these 3 people completely to have my best well being at heart.  Fortunately it hasn't been needed, but it relieved a stressful concern for me that I had someone who was aware of my behavior if I ever reached a point that I was not aware of myself.

I hope this finds you all in the best condition you can be in.  Take care of you!  You can't pour from an empty pot.

Friday, January 20, 2017

The annual Girly Bits appointments

I posted on the Sausage toes and Scales Facebook page that I am going to take a bit of a new direction with the blog.  More of a misadventures in life with Psoriatic disease.  So with out any further delay, here we go..

A week or so ago my friend in TX sent me a Snapchat of her Gynecologist's office bedecked in pictures of the Pope and inspirational sayings that aren't so inspirational while a stranger is probing your uterus.  As I chuckled at how uncomfortable it must be for her to have her bits on display in front of the pope like a check of virtue in mid evil times it dawned on me that my time was coming.

To most people this means remembering to shave the day of their appointment and if they are getting a mammogram remembering to not wear deodorant.  For me however this takes planning.  Otezla has my Psoriasis in a state of not good, but not as bad as it could be.  It is however bad enough that shaving is not a regular activity in my hygiene routine.  Last time I shaved my shower resembled the shower scene from "Psycho" with the blood circling the drain and I still didn't have a good shave.  So at this point in the story my legs look like I'm growing out the leg hairs to donate to locks of love.  I kid you not.  I could braid it.  When it gets to this point and I have quite a bit of psoriasis coverage I usually opt for Veet.  It doesn't seem to irritate my skin, I don't have to get an economy pack of razors, and in 10 minutes my legs are hair free.  So I head out to the Walgreens to get the Veet.  My appointment isn't for a week, but I don't want to wait to the last minute and find all the Veet is out of stock in Arizona.  Guess what! Walgreens was out of stock.  Not panicked yet I head across the street to CVS.  All they have is the Aloe Vera flower smell version of Veet which makes my eyes water and my skin burn.  Now I'm starting to panic a bit.  What if they have a nationwide shortage of Veet?  What if I can't find it before my appointment a week away??  How will I face my GYN with locks of love length leg hair???  My final stop is Walmart.  I hate Walmart.  It gives me the creeps, but we're in desperation mode.  Walmart has Veet.  Hallelujah!!

Now that the crisis is averted I need a nap.  I am too tired to think about what else I need to do to prepare for my probe and squish appointment.  I needed a 4 hour nap.  Seriously this is why it takes a week to prepare for these things because I have to nap after every step of preparation.

I get a call the next day to say "oh by the way your appointment for vageen probing is tomorrow.".  Um no it's not.  It's next week.  Oh crap! My brain has failed me again even though the appointment card is on the fridge with the date of TOMORROW highlighted.  There is no possible way I can make that so I need to reschedule to the day I originally thought it was which happens to be the day my boob squishing is.  Well of course the person who called to remind me can only cancel the current appointment.  I must call the person sitting next to them in the office to reschedule.  Calling any Dr's office to make or reschedule an appointment is a headache on a good day.  Calling any Dr's office at the VA can be like waiting for your number to come up at the DMV the day after every freshman in the county finished drivers ed.  So I make the call and go through the prompts and wait. And wait. And wait. 30 minutes later I get a human and it's not the human who can make the appointment, but they will transfer me.  Wait, wait, wait, click.  Disconnected.  After many deep breaths and a walk about the yard I try to call again.  Repeat the previous call, wait, and wish process and this time I get the right human who informs me I have a cancelled appointment and they don't know if they can get me in any time this millennia.  I resort to begging and miracle of miracles there is an appointment an hour before my boob squish appointment.

So now we have the correct appointment times, Veet, and it's time for another nap.   Yes I nap a lot.  My fatigue has been off the charts since November so I feel like most my life is comprised of sleeping and eating.

Flash forward to Monday.  My appointments are on Wednesday so I decide this is the day to tackle the forest on my legs.  I get everything ready.  Veet, washcloth, the "spatula" that they include with the Veet, a towel and a beverage because this is going to take some time.  I prop on the side of the tub and proceed to spread the Veet on my legs from ankles to thighs.  Everything is going fine.  I'm singing and balancing on the tub.  The 7 minutes passes and it's time to scrape the offending hair off my legs.  Everything seems to be going smoothly until I get to my thighs.  I realize rather too late that in my impromptu karaoke session some of the Veet has gotten onto what we will call the triangle.  Not really a huge deal as I know many women who go bald all the time or at least for their annual appointment, but this isn't baldness.  It is more like patchy spots that are the nightmare of women having bad dreams of their Gyno appointment.  I hurriedly  rinse off the remaining Veet and also come to realize that a few spots were more resilient than others on my legs.  Most of us have that one spot when we shave we always seem to miss.  Mine are behind my left ankle and under my right knee.  It doesn't matter how attentive I am in my shaving I always miss those 2 spots.  Well apparently the hair under my right knee is  Teflon plated diamond infused hair because it was also impervious to the Veet.  At this point I've expended all my energy for the day and figure I can just do a quick touch up the morning of my appointment while I'm in the shower.  The groin area is just going to have to look patchy because I will not be found naked and passed out in my shower because I tried to fix that area while showering and lost my balance.  It's happened before so it is a legitimate concern.

I'm no longer at locks of love length in leg hair for the most part so I call it good enough.  On Wednesday morning I get in the shower and clean up the Teflon knee hair, wash my head hair and get dressed for my appointment. I get to the VA, and wait in the clinic for my appointment.  The nurse takes me back, looks at my records and says "you just wait here.  Keep your clothes on".  Well that seems a weird way to do a pap exam, but the less time in those gowns that leave your ass exposed to the world the better I say.  The dr comes in and announces that I don't need an exam as my lack of a sex life and having basically 30 years of normal pap smear results gets me the prize of only needing an exam every 5 years unless I am having problems.  I was thrilled, but then it dawned on me the last week my whole focus had been shaving my legs for this appointment.  If I wasn't so happy about not having the probe for another 4 years I would have been really pissed I unhaired my legs for nothing.

At any rate I'm all good.  Hairless, but good.

So next time you ladies are looking at your legs thinking you really need to find the energy to shave the moral of the story is there are a lot worse things in life than hairy legs.  Don't sweat the small stuff.