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

Reality versus Fantasy

Once upon a time I found a miracle in a pharmaceutical.  It was called Remicade.  I thought things were bad when I started it, and in the grand scope of things up to that date they were bad.  At any rate I went from needing steroid shots into my hips every 3 months, waking up feeling like a steam roller had run me over in my sleep, random swelling making surprise attacks randomly all over my body to feeling rather normal the majority of a time.  That miracle lasted a good 4 years before things started slowly returning.

Because I started Remicade before the inflammation had done major permanent damage returning to functioning and mostly normal was a realistic expectation of a working biological.

Today I am learning the reality of biologicals and Psoriatic Arthritis again, but my reality before is a fantasy today.  Stelara is doing amazing things for me, but unfortunately damage has been done over the last 3 years or so since Remicade quit working.  I have to realize that my normal today is a different normal than it was 5 years ago.

As I spend quite a bit of time watching tv these days the commercials about various biologicals that are treating Psoiratic disease make it appear that is you take these meds you will enter a magical land where you can run marathons, climb trees, paint your house, and dance all night when you take these miraculous cures to an incurable disease.  I understand this is part of the ugly machine that has become our necessary dance with big pharma.  They are in it for a profit, and any of you who have looked at your insurance claims know they are making HUGE money off of these treatments.  I just feel that someone needs to include a little reality with the pharmacy fantasy.

I have been very fortunate that I have had a few very good Rheumatologists who have given me the courtesy of being realistic with me, and giving me a little come to Jesus lecture about my sometime unrealistic expectations of my body and my treatments.  I just hope other Rheumatologists include the same amount of reality into their counseling on using biologicals.  It is however such a fine tuned dance between being realistic, being fatalistic, and being overly expectant and hopeful.

The lesser of two evils.

As many of us are figuring out many of us have to choose the lesser of two evils when deciding on treatment options for Psoriatic Arthritis.  It's been a battle of lesser evils for me for the last 10 years since I was finally diagnosed.  Even when it comes to long term use of NSAIDs.  Does taking ibuprofen for years and hoping doesn't eat our stomach or destroy are liver a lesser evil than having a moderate level of anti inflammatory pain relief?  I am currently in the battle yet again.  I am finally getting relief with Stelara which was it's own lesser evil battle because of all the unknowns, but now I'm switching from daily use of Lortab (narcotic pain med) to daily use of Zanaflex(muscle relaxer).  On Lortab I can function.  I've been on some form of Hydrocodone for most of the last 2 decades.  It doesn't make me loopy, tired, foggy, or high.  It takes the edge off a pain that makes it so I can't concentrate or function.  It is a functional medication for me that I use as prescribed.  With the new regulations regarding Hydrocodone and that Stelara has improved my inflammation levels that were fueling a majority of my pain the last 2 years my Rheumatologist and I decided that it was time to officially cut back on the narcotics.  Most of my pain now is due to classic Psoriatic muscle, tendon and ligament stiffness due to periods of inactivity such as when I am sleeping SO muscle relaxers it is.  Now I've been on 4 different muscle relaxers over the years and the only one which helped was Skelaxin.  The VA who does my care and prescriptions in their continual circus ways have decided that Skelaxin is not "cost efficient" so even though my Rheum prescribed it the pharmacy has decided I need to try yet another one and Zanaflex is it.  I've been on it 3 days and it does work on my muscle spasm and tension, but it also makes me want to sleep.  If I sit down without being actively occupied with something like writing in my favorite blog I'm out in less than 5 minutes.  SO which evil is worse? Pain and muscle tension or sleeping my life away?  I am hoping that in a week or so the effects will lesson because it is genuinely working on the problem.  I wake up in the morning and though I never feel rested at least I don't feel like those damn ballerina ninja elephants have been doing swan lake on my body all night.  Oh the fun lives we live.

Also I need to pass on some info which I was told today for those of you in the US.  There will be new regulations concerning all medications which contain Hydrocodone.  This is significant for any of you who use these medications as prescription writing and filling procedures will change.  You will need to discuss this with your prescribing physician to minimize problems and delays in getting your pain medications.  It will take about 6 weeks for this to be fully implemented, but it will undoubtedly start causing issues even before it is officially implemented with our favorite pill nazi pharmacies ( you know who I'm talking about).  Here's the link on the NEW FDA REGULATIONS.  I also posted a link to the FaceBook Sausage Toes and Scales page.  Please please please do not wait till the last minute to address your prescribing physician about this.  I've done withdrawals.  Trust me it's not fun and I wouldn't wish it on anyone.  It can also be very dangerous for those of us that have extenuating health issues.

Peace and healing to all of you...

~Heather

Barometrically challenged...

Yesterday there was a discussion about weather and Psoriatic Arthritis in one of the PsA groups I am part of.  Many of us run into doctors that insist that there is no connection to arthritis, pain and weather, but talking with people with different types of arthritis including immune and osteo arthritis there seems to be something to it.  I went to search for reasons why this might happen.  I remember stumbling on a Dr Oz episode that he talked about it using a balloon to describe how the pressure changes the equalization in the joints (and many of you know I DESPISE Dr Oz), but now I can't seem to find it.  I did however find this Dr Oz post which talks about the effects of weather on many parts of the body and this is what he had to say about joints

 "How air pressure affects your joints Our joints actually depend upon the outside air pressure to keep them in place. During storm fronts, when the external pressure drops, it allows the joints to loosen, which can cause pain, especially if you are using them a lot. If you notice that your body tells you wet weather is coming, talk with your doctor about how to be proactive and ease the pain before it can slow you down."

I'm not sure how talking to my Dr who thinks weather pain is in my head is going to help, but thanks Dr. Oz.

Arthritis today has a weather index tool to help you determine if it's going to be a bad arthritis day (you know in case your arthritis hasn't already told you so), but they seem to be clueless to the reason for this phenomenon as well.

WebMD the site I love to hate (you all know what I'm talking about because you too have decided you have ebola because of WebMD at some point) says that great aunt Mabel may not be your most accurate meteorologist (even if she is always right) because there is no SCIENTIFIC proof behind the joint/weather connection.  And by the way this pisses me off too because I'm no one's great aunt Mabel yet.  What about us youngsters??  My 17 year old niece can predict the weather too dammit.

Finally the University of South Carolina came up with a plausible explanation.  The article does begin by insinuating that we human barometers are "eccentric" (could they mean crazy?) they do go on to say "Suppose you have an inflamed joint that is subject to swelling," said Fant. "If the barometric pressure is decreased, then that would allow the inflamed tissue to swell more, simply because there is less atmospheric pressure holding the tissue back. If there are nerves in that tissue, then those nerves would be stimulated by that swelling and that would translate into pain."

At the end of the day it sounds like most medical and scientific types think that we are a bit off in believing that we can predict bad weather, but their reason for feeling that way is they simply can't explain it.  Many aren't denying that the frequency of occurrence of arthritic patients experiencing increased discomfort due to changes in barometric pressure (usually when it is falling), but since they don't know why it can't be true.

I could go on a soap box rant about all the mysteries of the universe that are unexplained yet true, but I will refrain.  For now my barometrically challenged joints are going to praise all that is good in the universe because the Valley of the Sun is expecting a dry spell for a few days and I might actually get some relief.  Here's to stable weather for a couple days!  YEAH!  Only a few more weeks of monsoon season and my love of Phoenix will return.

~Heather