Happy Holidays and a Blessed New Year!

As we approach the end of this year I am taking some time to reflect on all that has changed for me.  I've been "retired" for good, I've moved, I've made huge changes in my life.  Psoriatic Arthritis has dealt me some major challenges not the least being the pain that it brings.  It has also shown me some incredible blessings.  I have learned to slow down and smell the roses so to speak, and I truly doubt I would have taken time to see so much beauty in the world if I hadn't been forced to slow down.

I will be going off line for the next few weeks to spend time with my family and friends.  So for this my final blog of 2013 I wish for all of you to find relief from pain and itchiness.  I wish you all to find joy and peace even in your darkest moments.  I hope for all of us to realize a relief whether it be through new medications, improved lifestyle, and or managing our stress better.  I hope that all of us know we are not alone in our journey through this illness.  Be kind to each other and to yourselves and live the best life you can.

Have a wonderful Christmas and a blessed New Year!!!

~Heather

P.S. Here is my late night attempt at keeping steroid goop from getting all over everything.  Knee highs cut into fingerless "gloves".

A month in the life of a flare

I've been in an active flare for about a month now.  I'm really ready for it to go away at this point.  I mean a day is too long to be in flare, but I've reached the point of sleep deprivation whackiness, nervous system overload, and brain scramble.  I also find I have a short fuse so things that I usually just shrug off make me want to rip someone's head off.  I know I'm at this point so I try to catch myself and remind myself to breathe and count to 10, but we all know that isn't always a successful tactic.

SOOOO since there is yet another night of no sleep I figured I go through my life in flare for the last month.  Not so much a play by play as the way things play out in a typical long lasting flare for me.  Maybe if anything some of you can find the humor that is my life and laugh at me like I laugh at myself.  Or possibly you will see that you haven't gone off the deep end because you are going through the same thing and none of us is alone in feeling like we've lost our mind to pain.

Usually when a flare is coming I know it.  I knew this one was on it's way.  You never know how long your unwelcome visitor will be staying, but you know it will be knocking the door down like a steam roller driven by ninja elephants.  I generally try to convince myself I'm coming down with a bug.  Now I know this is very unlikely since when I am not on biologics I almost NEVER get sick.  The world could have the plague and I wouldn't get a sniffle.  Thank you over active immune system for that I guess.

Once I accept that a rare tropical illness isn't the culprit of my not feeling so hot I am usually starting to have the first twinges of the actual flare.  My energy levels are starting to tank, inflammation is beginning to show it's ugly puffiness, and the floating pain is starting.  I try to take it easy for a day even though I could still probably be productive.  I'm really hoping that I can just relax my way into stopping it.  Again I know this is not realistic, but I'm hard headed and like to live in lala land when it comes to my flares.  I mean I've lived my life forging forward and doing pretty much whatever whim jumped into my head and some of my greatest successes were purely the result of my stubborn will to make it happen.  It should work when I'm trying to convince my own body not to damage itself, right??  Well as you probably guessed wishing it away is not a successful way of dealing with the oncoming flare.  The appearance of sausage toes usually is my first stab back into reality.

Yes the lovely and oh so fun sausage toes.  Nothing quite like not being able to fit your feet in shoes, and swelling that makes even wearing socks uncomfortable.  Of course the swelling also affects my circulation so it's a choice of enduring the pain of wearing socks to trick your brain into believing your toes feel warm or no socks and having iceberg feet.  I usually opt for socks.  Tiger balm and socks to be precise.  At least I can smell like Christmas!  If I could see all my toe nails this would be a great time to indulge in a pedicure because the massaging of lotion would probably help my circulation, but my OCD won't allow for a crappy polish job due to half the nail being obscured with swollen toes.  Now keep in mind this is maybe day 2 of my flare and I'm already starting to lose my mind.  I'm now actively conversing with the cat.  My vocabulary has also increased in swear words and inappropriate things.  I'm generally about as politically correct as a sailer on Jack Daniels, but now it's been upgraded to a hooker on tequila except I have these sexy sausage feet now so I can't even get my hooker heels on.

By day 3 or 4 the insomnia is now starting to become a problem.  I've been an insomniac my whole life.  Long before Psoriatic Arthritis entered my life I have been one of those children of the night who managed to thrive on 2-3 hours of sleep a night.  I'm starting to get that sunken in look to my eyes so I have the appearance of a zombie who's had no brains to eat for days.  I have a small fortune invested in eye de puffery creams and gels to attempt to look somewhat human if I do need to leave the house or someone comes over.  I also have several shades of cover up and lightening cosmetics for the same purpose.  I usually start keeping the puff minimizing gel on the table next to me on the couch at this point.  This is also when my side table collection starts really taking over.  We now have extra fuzzy socks, tiger balm, pain pills, muscle relaxers, kleenex, cell phone, a few packs of smokes, anti puffy eye crap, and some kind of snack food sitting next to me at all times.  I still have not accepted that this could be a long flare so at this point these items are acting in more of a security blanket capacity than anything else.  Having hoarding tendencies in my family the small hoard of flare collectibles is soothing to me.  Of course also having OCD tendencies all my hoard must be carefully arranged in their appropriate places and rearranged regularly as my brain slowly degrades into madness.

Once we have gotten to the end of the first week I've come to a level of acceptance of my unfortunate fate.  This is usually the bitch and complain phase.  I put updates on facebook about how much I hate my body, how much I love my cat, how much I wish I could drown my tears in Jack Daniels.  Those that know me have pretty much learned to just ignore my whining and complaining.  They know that it will pass and that even if they offered help I'd turn them down.  Again this is because I am hard headed and stupid when it comes to accepting my illness.  This is also when I start assessing my stores of food in the house.  I know that soon driving will be a bad idea.  Not only is moving painful, but lack of sleep and a regular flow of narcotic pain meds makes it just a bad idea.  I usually keep enough food in my house that I could survive the apocalypse for about 3 weeks without too much creativity, but my real emergency food stash of frozen pizza, frozen lasagna, string cheese, nuts and dried fruit is usually only about a week's worth in reality.  Fortunately (or maybe not) when I get into these flares eating is not high on my priority list so my obsessive need to have the pantry stocked isn't too high on the worry list.  However at the end of week 1 my acceptance of the situation at hand is approaching reality and I think about restocking my "I can't move any farther than the microwave" food stores.  Now add to my flare hoard the grocery list and chocolate.  The side table is starting to get crowded.

Entering week 2 I become a mermaid.  Dry heat from my rice pack and tiger balm isn't touching the inflammation so it's now time to live in the tub.  I used to get worried about being stuck in there (and yes it's happened before), but anymore I just want to have as much of my body covered in the wonderful heat of my tub water.  I have very little concern anymore about being found naked by emergency personnel so if I get stuck I'm ok with hot paramedic coming to rescue me.  Maybe I'll get lucky and I'll get a pity date out of it.  So this is the week that bath tub karaoke becomes the norm.  I'll sing in there till I'm hoarse and my skin is raisen wrinkly, and then I'll stay in there a little longer.  There is a special place in my heart for my ginormous water heater.  I am pretty sure I water log my brain during this week too.  It's pretty evident that my grey matter has started becoming swiss cheese.

Once we get to week 3 I've fully accepted my own personal hell.  I am usually starting to have random nerve pain by this time.  My nervous system has been on overload and on negative amounts of sleep for so long now that it just doesn't know how to behave anymore.  Muscle spasms and stabbing hot pains in random places are pretty common at this point.  It usually is from both inflammation putting pressure on weird and inconvenient places and my nervous system just generally being overloaded and screaming out for relief.
This is also when my brain starts having trouble deciphering things.  There is no more multitasking.  And by multitasking I mean seeing and hearing at the same time.  No more being able to filter out what I'm supposed to pay attention to and what is excess noise.  To give an example, I called the VA to reschedule an appointment and the clerk who I was on the phone with was speaking with me and speaking with one of her coworkers at the same time.  My brain just couldn't follow my part of the conversation.  I asked her to repeat it to me because I couldn't understand what she was saying and she was still holding multiple conversations with me on the phone.  Now is when my short temper also came in.  I told her that I really needed her to limit her conversation to me and not bull shitting with who ever the fuck she was bull shitting with because I wasn't able to focus on which conversation she was having.  She got a little upset with my inappropriate language, but I got my appointment rescheduled and she quit acting like a rude jack ass and fiddle fucking around while she's supposed to be working on rescheduling my appointment.  I fully expect to get questioned about my anger management issues at my next appointment.

Finally we are at week 4 or now known as I give up.  I've fully gone through the stages of mourning at this point for the millionth time.  I have quit worrying about the insomnia and just sleep whenever my body lets me.  Usually this is in the middle of an episode some TV show or movie I am totally into.  Of course when I do wake up I'm pissed because I missed what I'd been wanting to see and I can't remember for the life of me what the heck I was watching to even attempt to see if it's streaming somewhere.  I've accepted that my memory is worse than that of a fruit gnat so I must write down everything at the moment I think of it or am told about it.  I've forgotten to put my pants on before, worn different shoes on my feet, only worn 1 sock, forgotten to rinse soap or conditioner out of my hair, shaved one arm pit, left food ready to eat in the microwave for days, and many other half done or totally undone tasks because I simply forgot I was doing them.  Keep in mind this is not in a distracted by something else kind of way that many of us get when we are very busy, but I just sit down on the couch and forget what I was doing.  I can stare at something for a good hour and still not remember what I'm supposed to be doing with it.  My brain is no longer functioning.  All that is clear anymore is pain.  There is no longer a way to get to a mental distraction coping strategy because my brain just can't cope.  All there is to feel is pain and exhaustion.  Usually this is when I spend most my time curled up in a ball zoned out with something on the boob tube that is not being watched, but merely an audible attempt at not completely losing my sanity.

So there you have a month in the life of a flare, at least for me.  Having been through this so many times before the only thing that keeps me going forward is I know that sooner or later it will pass.  I know that as much pain and misery as I am in today that there will be a good day.  There will be a day when I can function at least a little.  I know that I have things to live for and to survive for.  I know that there are people who I want to live for.  Every breath is another breath closer to the day when I can smile and laugh again and that is worth waiting and praying for.

And time rolls forward... Unless you have daylight savings then tonight it rolls back.

I know it's been a bit since I've posted.  I haven't had a lot of updating to do.  My psoriasis has been doing the winter flare, but it still isn't as bad as it has been the past few years so that didn't seem noteworthy.

There have been some announcements in the last few months in the Psoriasis/PsA community you all should be aware of.  Firstly Stelara has been approved for Psoriatic Arthritis.  I know some of you have already been on this therapy through your Dermatologist, but now your Rheumatologist can prescribe it ON LABEL for Psoriatic Arthritis for those of you who do not have a Derm or who do not present with severe enough Psoriasis for this treatment in the past.  Secondly Cimzia has been approved for PsA .   Yes that's right TWO new approvals in September!  There is also some news of a new therapy in the pipeline for Psoriasis and as info comes out I'll be sure to let you all know.  Right now it's very shallow info and pretty much just that it's being put through Phase III trials right now.  So there you have it.  There seems to finally be some real progress in treatment options.  This is very good news for those of us who have gone through all the options.  It's been a long few years waiting for new options.

All that being said it appears that Stelara isn't an option for me right now because the VA here in Phoenix doesn't carry it in the pharmacy.  I may see if I can apply for a waiver once I talk to Dermatology, but the Rheumatologist didn't think that was likely to happen.  It seems odd that it is available in other VA's and they don't have it in their pharmacy inventory or available to order at this VA.  My new Rheum did say she would look into Cimzia, but when I was there it was not updated on the VA's therapy list for PsA so I couldn't start it last week.

I apologize for not posting this here last month when the info became available.  I have it posted on our Facebook page so please come on over if you are a Facebook person. Sausage Toes and Scales on Facebook  <<<< click there.

In my life the big news is that I FINALLY got my VA board decision.  I am now service connected for Psoriatic Arthritis.  Not only that, but the changed my bilateral bursitis which was the reason I was discharged from the Army to Psoriatic Arthritis.  This means that they feel I had PsA when I left the Army in 2000 AND that they accept responsibility for it developing along with the Psoriasis they had previously accepted responsibility for.  YEAH!  Any of you who are having this same fight with the VA there are 2 court cases referenced in my decision letter and I would be happy to share them with you if you send me a message.  It may help with your evidence when you are submitting evidentiary  documents.  SOOOO I am now 80% service connected (the Psoriasis actually got a larger percentage than PsA and is rated that way because of length of time on systemic medications which is something any of you should know about as well if you are dealing with the VA in reference to Psoriasis claims) with it upgraded to 100% unemployable.  This is a HUGE blessing not only for me, but also for my girls (and any future family I have if I ever get married again).  The girls are now eligible for education benefits and health insurance because of my 100%.  They will be able to go to college without motaging their souls to do it.  It is a huge relief to me and to them.

So there is the updates that I know you were all waiting on the edge of your seat about to get HAHAHAHA.

Blessings and healing to all of you!  I'll try to be more frequent for your reading entertainment. All you US readers who don't live in AZ, don't forget to fall back tonight.  Enjoy your extra hour of today!

Be careful what you wish for...

Last night as I was self medicating (translate to drinking heavily) because I am out of meds and don't have a Dr appointment until Thursday, it dawned on me that I now weigh what I did when I graduated from high school.  Through aging, having children, Remicade induced weight gain and such I have often wished I weighed what I did when I was in high school.  Some days I stand looking at myself after I bathe.  My body has the scars of a life lived and a body ravished by psoriasis.  The large dark psoriasis scars that probably I am the only one who really notices, the stretch marks (which I love because I remember which ones are from which daughter), the scales of psoriasis that come and go and come back again, and the scars from injuries both from stupidity and accidents all remind me to be careful what I wish for.  Yes I have the weight of my youth, but my body has definitely born the brunt of living and my disease.

The weight loss was not something I tried to do, it is a side effect of medication and illness.  I know that it is better for my arthritic weight bearing joints to not have that 50 lbs I've lost hammering them with every step, but I have to wonder if the weight loss "plan" I've been on is worth the weight loss.

As I sat pondering all this it also dawned on me my other biggest wish this past year.  To live with less pain and less extreme flares.  To move to AZ where I knew that was possible.  It has been possible for me and I feel very blessed and physically relieved to feel "better".  Better of course is a hard word to quantify, but I'm out of bed more than I am in bed.  This decision for my health also came with costs.  I am so happy to be near my parents, sister, and my sister's family, but I miss my best friend and daughter to the depths of my soul.  My heart is split in 2 and residing in 2 places.  After being here near my family I don't think I could leave again yet I don't feel like I'm functioning well with the other half of my heart 1000 miles away.  No amount of seeing my family or my new friends is quenching my loneliness.  I carry regret that after waiting and wishing for 14 years to have my child back and finally having her in my life and building a strong relationship with her that I am so far away.  My communication with both my daughters and morning phone calls with my best friend are what keep that wisp of a thread from snapping and hold me together emotionally, but I have to wonder when that thread will snap.  When crying in my tub won't be enough of an emotional release to keep me from totally breaking down.  I know that many will see this and dismiss it as life change induced depression, but I'm not depressed.  I also know some will say that with time things will work out and level out, but I just don't see that happening.  I've lived a gypsy life all my adult life and leaving an old place was just part of the journey.  I didn't forget my old place, but I didn't mourn it or dwell on it.  I remembered the good and looked forward to the next step of my journey.  I'm not leveling out.

Everything we wish for is sent out into the universe, and it may never come true.  Just keep in mind that it might and really be sure it is what you want because it may come with a price tag that is hard to swallow.  I don't know what the answer is to my response to the universe's answer to my wishes.  I will figure it out, but in the meantime I'll keep on keeping on just like I always have.

A year in my life...

September 24th, 2012 is an important day in the progression of my decline this past year.  I had my annual physical that day.  I was advised to get the TDAP vaccine, and after discussion between my GP and my Rheum it was decided it "should be ok".  Well hind sight is 20/20 so to speak because it was definitely the catalyst that sent my already flared condition into hyper-drive.  I was already only working about half time and had discussed taking some time off work to try to allow my body to equalize and try new meds, but I was holding out.  I wasn't ready to accept that I needed to slow down.  It's funny how we think we have a choice in these things sometimes.  My life came to a screeching halt on that day.

I never returned to work.  I still held out hope that one of the meds would stop the attack of my immune system, but nothing worked.  A few actually made me even worse (and I didn't believe that to be possible when I started).  I didn't apply for Social Security Disability until January because I hoped I would still be able to return to work.  That is something that will never be a reality for me the rest of my life.

This past year has taught me so much about myself and life.  Not only have I retired, but I have relocated to Arizona in hopes it would improve my health and to be close to my family.   I have learned to appreciate the small things in life.  I have learned to listen to what my body is telling me and be thankful that I can live at the pace my body sets for me (even if my head and soul are resistant to taking it slow).  I have learned that holding anger over what I have lost or had to give up is not healthy or productive.  I have learned that quality in everything I can control in my life far outweighs quantity.

These days I live a very different life than I ever imagined I would be living.  I wake up at 6 every morning still, but instead of fearing that I won't be able to get out of bed for work and lose my job, I get up when I can, I enjoy my cup of coffee on my patio.  I cherish my morning talk with my best friend.  I take time to cuddle with my cat.  On my good days I go for a walk or a swim, and craft.  On bad days I accept that it's ok to stay in bed or on the couch and allow my body to rest.  The housework will get done eventually. It's ok to eat frozen lasagna or a peanut butter and jelly sandwich some days.  It's ok to be a hermit some days.  Life continues to move forward with or without us.  We have to choose to live it the best way we can or we aren't really living at all.

I still have moments when I grieve my old life, but I don't have the rage I carried a lot of the last year about it. Life is to precious to squander it being consumed with rage and self pity.

So I guess today on the anniversary of my life taking a nose dive I want you all to know that it can be ok.  It may be different, but it isn't the end of life.  Listen to your body and find your joy.  If it's a day above ground you are one day closer to a cure or at least the hope of one being a reality.  None of us are alone in this walk and I want all of you to remember that.  In our darkest hour there is always someone out here who understands and gets it.  ALWAYS remember that.

On a final side note I want to let you all know that I read today that Stelara has been approved for Psoriatic Arthritis.  This is my next hope for relief as I have exhausted all the other options.  Hopefully it will be hope for many of us who have failed the other options.

Peace and healing to all of you!

Cuddle time with the cat (she looks thrilled).

Be sure what you are willing to pay for...

I know I have said I would be doing a blog on another medication, but I've been in and out of flares so much lately I've felt like I'm riding a roller coaster in a tornado.

Being in a new place and meeting new people I have tried very hard to be up front and honest about my disease and explaining what that means when it comes to committing to events or invitations.  I am very realistic that no matter how I explain it, people who do not live it can not truly understand it.  I guess that brings me to the reason for today's blog.

One thing I have tried to use as an explanation is that everything you do has a cost associated to it.  It's a concept most people can relate to on a basic level.  You want to go out drinking all night, you are going to pay for it both in your physical condition in the morning.  You do a quick touch football game with the buddies after years of not throwing a ball, your arms are going to feel it in the morning.  When you have a disease that has chronic pain and fatigue those decision making tasks of what you do you will pay for comes with every action.  It's constantly in the back of your mind on good days and bad.  On bad days you look at the shower and wonder if you will have enough energy to brush your hair or actually put clothes on after.  On good days you wonder how much and for how long you will pay for that house cleaning or trip to the mall for some retail therapy with your daughters.  Even intimate time with your partner is a cost comparison.  Along with all these decisions going on in your head you deal with the guilt that most days the answer is you just don't have the chips to pay for these activities in advance and you dread the pain and exhaustion you will pay for it after the fact.  Or as many in the chronic illness community say "you just don't have enough spoons".

Most of us will chose life moments any chance we have knowing the cost that will be paid if we can.  It is just very hard for those in our lives to understand that that 2 hours of expending energy doesn't equal 2 hours of not feeling so hot.  It can cost us many more hours or even days of recovery to return to our version of "functional".  Just the stress of making decisions over many events or the strife of misunderstanding can trigger a flare.  How can you explain that fun little complication and not expect people to feel like they are walking on eggshells around you constantly.  It's such a muddy, messy, convoluted cycle of crap.

I don't know if this blog has a purpose beyond my own venting.  I'm sick and tired of being sick and tired and not getting treatment because of bureaucratic crap.  So this is my vent for the day...I'm sure there will be a price to pay for it ;)

Even in the desert when it rains it pours

We are full swing into Monsoon season here in Arizona.  My Psoriatic Arthritis and Psoriasis have been MUCH improved since moving here, but yesterday I was reminded of just how bad my body can be.  Yesterday was a very, very bad day.  Luckily I had a comfy couch, a book, the TV and a fat cat to keep me occupied.  Also I am very lucky to have awesome family to help me out.  My niece came by for several hours to keep me company and pretty up my fingernails for me.  On top of that I had a wonderful man come by and help me get us fed.  Being my normal bull headed self I insisted on cooking for us, but he did the chopping and cutting and any heavy lifting.  All I had to do was direct.  It was a welcome and pleasant change.

I am starting to realize the differences here as to how my body reacts to weather.  I am still very sensitive to barometric changes, but here in the desert the changes can hit so fast and so hard that a body doesn't have time to stew.  In Dallas I could feel the build up of a storm for days.  When it would finally rain it was like a pressure valve was released in my body and it would feel like my whole body would finally be able to exhale.  Here I have an achiness when we have storm systems around us, but it's such a dramatic change it isn't the build up like in Dallas.  With all the sudden storm attacks of the last week and some emotional stress my body decided yesterday enough was enough and everything was flared.  It was the worst day I've had since I've been here and comparable to my many bad days in Dallas, but this morning I am feeling MUCH better.

As much as I hate bad days I know it's a reality for me.  I also will gladly exchange 1 really bad day for months of bad days.  I've been here for just over 2 months and in that 2 months I've had 2 days I was home bound.  It's a pretty amazing improvement no matter how you look at it to weeks of being home/bed bound in Dallas.

I am working on the next medication blog.  I have decided to do it on Enbrel.  If you have any specific questions you'd like researched about Enbrel please add a comment and I will add it to my list of points to look up.

May you all have many blessings and joys in your day!

Riding the rollercoaster.

Today was a good day.  I felt good, I met some of my neighbors and enjoyed their company, and spent some time with a friend.  Then I was alone.  I like being alone a lot of the time, but sometimes it just gives me time to stroll through the deep valleys of my mind.  Tonight is one of those nights.  I thought about the roller coaster my life has been.  I wouldn't change a thing.  Now that doesn't mean I don't regret some choices, but it does mean that I appreciate where those choices have lead me and what they have made me.

As I sat in the tub I thought about the last 2 years especially.  A little over 2 years ago I quit taking Remicade.  I was not getting benefit from it anymore and had started the oh so obvious decline that can be Psoriatic Arthritis, but my skin was still clear, I still had energy, I still felt able to be productive at work, I still made commitments with friends, and I started a relationship with a wonderful man.  He doesn't read this blog, but I still feel he deserves to be acknowledged as the one person who was there through the worst of my last two years.  He stuck by me as my skin turned into scales that cracked and bled, through days when I couldn't walk or get out of bed, he believed in me and that I was beautiful even when I didn't.  Then came a time when I had to leave.  Even though he never left me, I had to leave him.  We both had to do the best thing for our own lives and that meant not being with each other.  For the rest of my life I will respect and love him for being my strength when I had none.

So now here I am.  I am blessed to have my family close by, but I realized today that these people are meeting the "new" me.  The me who has days when I can't leave the house.  The me who doesn't work because I am sick.  The me who isn't real sure who me is sometimes.  The me who has learned to make the best of what I can, and lives life with quality because quantity isn't an option.  They will never know the me who would dance till the sun came up, climbed cliffs, ran 10k's, created detailed jewelry, the me who excelled in a career and the me who didn't accept limits or rules because there was always more I could accomplish.  I wonder if they will accept the me I have become.

I realize that with what my disease has created for me I do have some blessings.  I have the time to see the beauty around me, to truly enjoy the things I can do when I can do them.  I can write and create again.  Maybe I can even love again.  It still reminds me every day of the things I can't do though.  The things I can't give my children, the things I have to watch from the sidelines.  It's a hard pill to swallow some days.

I guess I need to resign myself to riding the rollercoaster.  I always loved the thrill of the ride.  It's just a little different view now and I will find a way to see the beauty of that point of view.  It's just going to take some time.

So tonight is dedicated to the rollercoaster of life.  May we all find a way to enjoy the ride.  The view from the top is phenomenal!

Welp these creams don't work... Let's switch to a chemo drug! All about Methotrexate.

This will be the first of my focus on medications series.  I picked Methotrexate because it is usually the first in line for the heavy hitters of meds when you have unresponsive/ moderate to severe Psoriasis and or Psoriatic Arthritis.  

For those not in the know yet Methotrexate is often referred to as MTX.  It is considered a Disease Modifying Antirheumatic Drug (DMARD).  It is also used in higher doses to treat cancer.  Many times starting you on MTX is a means to an end as most insurance companies require you to fail on at least one (and sometimes specifically MTX) before you can start on a biological therapy.

So on to the nuts and bolts.  MTX is available in pill and shot form.  It is usually taken 1 time per week for Psoriasis and Psoriatic Arthritis.  It was approved for use for Psoriasis patients in the 1970's.

What MTX does:  MTX slows the development of psoriasis by suppressing the part of the immune system that is causing the increased development of skin cells.  It does this by binding to and inhibiting the enzyme responsible for excess skin production.  Recent studies are finding that MTX does NOT have significant effect on Psoriatic Arthritis as it does on Rheumatoid Arthritis,  however it is still a prerequisite for many other meds which do help Psoriatic Arthritis, and it does show improvement in Psoriasis.  It does act as an immuno suppressant so may slow the progression of Psoriatic Arthritis even if it is not giving relief as many other DMARDs and Biological medications do.

Potential Side effects: Commonly known side effects of MTX are nausea, headaches, hair loss, mouth ulcers, and fatigue.  It is also known to be very stressful on the liver and long term use is known to cause liver toxicity.
The copy and paste version of side effects are...

• dry cough, shortness of breath;
• diarrhea, vomiting, white patches or sores inside your mouth or on your lips;
• blood in your urine or stools;
• swelling, rapid weight gain, little or no urinating;
• seizure (convulsions);
• fever, chills, body aches, flu symptoms;
• pale skin, easy bruising, unusual bleeding, weakness, feeling light-headed or short of breath;
• nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); or
• severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

Common side effects may include:

• vomiting, upset stomach;
• headache, dizziness, tired feeling; or
• blurred vision.

You will need to have liver function tests done regularly (usually quarterly) to make sure that MTX is not over taxing your liver.

Ways to minimize side effects:  Because many people do experience varied level of side effects while taking MTX it is a common point of interest on community boards about Psoriasis and Psoriatic Arthritis.  Many people find that just switching from the pill form to the shot form of MTX brings a lot of relief.  The time that you take your MTX can make a difference too.  Taking your medication before bed so that you sleep through the worst of the stomach upset can help.  Most physicians will prescribe folic acid with MTX to help combat side effects.  Folic Acid is generally taken daily EXCEPT for the day you take your MTX.  Other things that help with nausea are ginger products (ginger snaps, ginger tea, sugared ginger), hotpad on the stomach area, anti nausea medications, the BRAT diet (Bananas, Rice, Applesauce, Toast)

My personal experiences with MTX:
I have been on MTX 3 times over the last 10 years.  The first time was solely for Psoriasis.  I was on the pills and did experience some nausea, but taking them at night was enough help for me to not be in too much discomfort.  I took solely MTX for about 6 months and it worked well on my Psoriasis.  During this time I was diagnosed with Psoriatic Arthritis and it was decided to put me on Enbrel and drop the MTX.  The second time I was on it I was on Remicade and it was added to try to increase the effectiveness of the Remicade and prolong the amount of time that I could stay on Remicade as I was at max dose max/frequency of Remicade.  This time I started with the pills and experienced severe nausea and headaches.  I was switched to the shot form and again taking it at night and the nausea reduced and I no longer had migraine level headaches.  After about a year the combo of Remicade and MTX was causing my liver function tests to come back high so it was decided to stop the MTX.  The final time was after I quit Remicade.  My Psoriatic Arthritis was no longer responding to Remicade so it was decided to try MTX alone for a while since I had responded well to it before.  This time I started with the shot form.  I had severe nausea, vomiting, hair loss in large clumps, severe headaches, and very high liver enzyme tests.  I was only able to tolerate it for about 2 weeks before the doctor took me off of it.

So there you have the good bad and ugly of Methotrexate.  I know it can be a scary option, but many people do respond very well to it on it's own for many years.  None of the advanced meds are an easy choice to choose so if you are at the point in your disease that DMARDs and Biological options are being discussed this is an option.

Please remember I am not a medical professional.  Discuss all your treatment options with your specialist and do your own research.  Be your own best advocate!  Be proactive and be educated.

Web Resources:
1. http://www.psoriasis.org/about-psoriasis/treatments/systemics/methotrexate

2. http://www.medpagetoday.com/Rheumatology/Arthritis/33895

3. http://www.drugs.com/sfx/methotrexate-side-effects.html

4. http://www.webmd.com/digestive-disorders/brat-diet

Happy July!

Welp it got here quickly, but I committed to start up the blog again in July so here I am!  Happy Canada day to our  Canuck friends.

To catch everyone up, I recently moved to AZ.  LOVING the dry heat.  Yes when it hits up near 120 it's ridiculously hot, but that's what AC is for :)  I've been having a flare the last few days, but it's been too hot to be up and about so camping out on the couch with the TV is just fine.  Maybe tomorrow I'll feel up to a dip in the pool.

As for my Psoriasis it looks about as good as it did while I was on Remicade.  Between Arava and my daily time in the sun my skin is happy.  I had a small flare start up last week which was expected after the stress of a move, but it got under control very quickly.  Overall my Psoriatic Arthritis on my worst days have been better than my best days in Dallas.  We are in Monsoon season here, and yesterday there were storms all around the valley and we had a small (according to the locals) dust storm come through so I had a pretty typical rain pain flare.  It's the first one in a month and I'll take it compared to several a week I was suffering through in TX.

So here we are in July and let the fun begin!  I had a few suggestions on the Facebook page for topics to cover, and welcome any here or there.

Finally a heartfelt sorrow and prayers for the people of Prescott, AZ who lost 19 brave souls yesterday.  May the families of the firefighters lost find peace and comfort in the days, weeks, months and years ahead.  Thank you to these amazing men who gave their lives to try to save both the lives and properties of their neighbors of the city of Yarnell.  May we have rain in the area soon to help the continued fight of this blaze that has devastated 2000+ acres and the lives of hundreds.

2 weeks to Phoenix

I know I've been very delinquent in posting.  Besides the disability, LTD, VA drama that you all know about I am preparing to move.  I also have my youngest turning 18 and preparing to move out on her own.  On May 24th I will be hitting the road to PHX.  I am really excited and ready.  I truly hope that once I get there and find myself a home I will be able to focus on this blog more.  I have a lot of things I'd like to discuss, in fact I have a list of topics that I need to research and want to talk about. I do apologize for my lack of presence and want you all to know that I am not just not thinking about the blog.  Life is just a bit overwhelming right now.  I will be back and I will be more active.  I am making it a commitment.

I wish you all healing and joy.  Here's to my life moving forward in a few weeks!  If you have any topics you'd like me to talk about feel free to leave comments.  I'm not shy or short on words as anyone who has read the blog knows so don't be shy!

Beware of the "good day".

Anyone who has a chronic debilitating disease can attest to the rarity of a good day.  A good day is one of those days that your pain levels are better than usual, your mobility is up, your mood is up, and or you get an opportunity to do something your body has kept you from doing for a very long time.

Today was a good day for me.  It's been at least weeks since I've had a good day so I was excited when I woke up with very little stiffness and pain.  Then after getting my cup of coffee I realized the pain still wasn't appearing, and all my limbs and digits were working pretty well.  If I felt like this every day or even most days I would be working still.

Now here's where caution comes into play.  It is very easy to say "WOOHOO! Lets go mountain climbing and paint the house!" You know you will pay for it tomorrow if you do these things at a best case, and probably half way through your house painting your body will remind you that you have no control.  Most times though I keep in mind that whatever I do that is above and beyond I will pay for usually sooner rather than later.

Today I managed to keep myself in check.  I took myself out for lunch at my favorite Cheesesteak joint and got my car oil changed.  Once that was done I enjoyed a nice nap with an unusually full belly and had some of the best sleep I've had in as long as I can remember.  Yes I realize that this does not sound like much of a day to most people, but my days usually involve either staying in bed or being on the couch and maybe packing a box of stuff to prep for my move and at least a few naps.  It's gotten to the point that cooking or even making a sandwich is a challenge most days so this day was getting me off the couch, out of the house AND I got the best Philly in town.  SCORE!  I'm sure my car appreciates the new oil too.  She was way overdue with all the traveling I did over the holidays.

I'm still feeling pretty good, but my hands are starting to swell up and my knees are catching.  I am fairly sure my good day won't make a repeat visit tomorrow.  I'm ok with that though.  I've learned to enjoy them when I have them.  It's not worth dwelling on what I used to be on normal or bad days.  Just make the most of every day good or bad.

The moral of the story though is to be ready to pay for what you are going to do.  Sometimes a good day is just a day to be happy and enjoy.  You don't have to conquer the world.

One last thing before I go, I had my Social Security Disability physical last week.  Haven't heard back from them yet, but I feel it went well so keep your fingers crossed I will have approval soon.  I'll blog about the whole Social Security Disability process one of these days, but I'd rather get through it all so I have some feeling of knowing what the heck I'm talking about.

Back to the waiting game.

Hi all!  I have been delinquent yet again in blogging.  I'm not going to make excuses, but I will apologize.  I am sorry for not being more regular with the blogs.

Went to the VA yesterday for yet another follow up.  I'm considering just getting a cot and living there.  Firstly I want to give HUGE cudos to the Pain Management clinic.  They really should have never seen me as I was already in a maintenance plan, but my PCP sent me over there anyway.  The VA does not carry Butrans which is the synthetic Morphine patch I had been on since November so we had to do some trial and error.  They started me on the lowest dose, and it did nothing.  After several days in bed hoping that it would build up in my system and kick in I finally gave in and gave them a call.  The decision was made to up my dosage, but since driving the hour to the VA to pick up the script they not only sent me a new dose, but overnighted it to me.  The med/dose I am on now (Fentnyl) is not as good as the Butrans was, but it is what I will call and acceptable level of ok.  The Docs and support personnel at the Pain Clinic renewed my faith in the VA.  I still don't trust it on a whole, but they gave me some of the best care and were some of the most compassionate care providers I have ever been to.  Thank you!

I  headed on over to Dermatology after finishing with the Pain Management Clinic and they had canceled my appointment.  I should have known that was not a good sign about getting on Stelara, but the receptionist squeezed me in anyway. (Another great VA employee!)  Apparently the Biological Board has not met and won't be meeting for at least 2 more weeks.  The Derm resident was honest with me, and I appreciate that honesty.  She said "Don't hold you breath".  Her less than optimistic view was not about getting Stelara some day, but about getting it in time to get the initial loading doses before I was moving.  I guess that next treatment of hope will have to wait till I can get vetted and into the system at the Phoenix VA.  While driving home I realized that was probably a good thing.  I have been so desperate for some kind of hope for relief that I hadn't considered the possibility of adverse reactions.  If I had very bad side effects it could very well stop my move to Phoenix if not worse.  Better to wait.  Everything happens for a reason.

So there you have it.  I am back in a holding pattern.  This week is my last week of Short Term Disability and I am on another holding pattern for getting approved for Long Term Disability.  Hopefully that will resolve itself very soon.  My rent isn't going to pay itself.  I also have my Social Security medical exam next Friday.  Things are moving at their own sweet time, but they are moving.

Happy Good Friday and may you all have a beautiful and blessed Easter!!

WOOHOO new drugs! (not so woohoo yet though)

Today I FINALLY got in to the Dermatology department to see about starting Stelara.  The Rheumatology had already recommended it, but because it is not approved for Psoriatic Arthritis the Derm is the one who has to prescribe it.  They are in agreement, BUT it has to go through an approval process with the "Biological board".  They have sent a message to the president of the board that we are under a bit of a time crunch due to my pending move and wanting to get the first 2 loading doses done before I move.  Fingers crossed I may have one last chance at a biological that might work.

If Stelara doesn't help I'm SOL (shit out of luck for those that aren't acronym versed).  It's the last option until the IL-17 drugs and a few others work through the approval process.  My understanding is that is at least 2 years away still.

I also saw the Pain Management Docs today.  Apparently the VA pharmacy does not carry Butrans.  Butrans is the weekly synthetic morphine patch I've been on since November.  It was helping quite a bit.  My pain had been at about a constant 8 even with taking vicodin all day every day, but with the Butrans it had been holding steady at around a 6 most days.  On bad days I was still able to take a vicodin, but it's reduced my vicodin intake to 1-2 doses a few days a week.  That is HUGE.  ANYWAY, now they have switched me to fentnyl.  I have never done it before so wasn't sure what to expect.  I put it on at about 4 this afternoon and I get to spend the next 24 hours or so while my nerves have their normal new med freak out.  It's kind of like when you get fever pains all over your body. UGH!  The good news is if it works then life goes on, if it doesn't it is enough evidence that I don't have other options so they will request that Butrans be added to the VA Pharmacy. I know, I'm high maintenance.

One last thing I'd like to mention is a thank you to a friend.  Thank you for being the only friend who has come by to spend time with me.  Thank you for being the one who reads my blogs.  And thank you for being the only one in a few months to make any contact with me.  I realize I have been out of the loop.  It has been a very hard 6 months, and it really means a lot that you have reached out.

Stress....

As most of us know, stress is one of our biggest enemies when it comes to Psoriatic disease.  Whether you have only skin involvement or it has gone on to the arthritis phase, you can guarantee that stress will bring out the worst in your disease.

In the last few weeks I've been noticing some improvement in my skin.  I think the Simponi is finally working it's way out of my system and the Arava is fighting the good fight.  Though the psoriasis is continuing to spread to new and never before explored areas the severity of the scales and frequency of fissures is declining.  My fingernails have almost all grown completely back to full attachment.  I still have a few toenails hanging on for dear life and my pink and pointer finger on my right hand are not totally better, but everything is improved in the nail bed area.  I also have only had a few pustules on the soles of my feet in the last week and my hands are nearly totally healed.  I realize I'm tempting fate by announcing this, but it is what it is.

All that being said the last few weeks have had, and continue to have, a lot of familial stress.  I won't get into details because most of it is very private to other family members, but none the less it is stressful to be so far away while my family is going through struggles.  I fully expect a full on flare to be arriving in the next 48 hours.  My hips and knees have already started the all too familiar swelling with pain.  I also developed a new fissure on my left middle finger this evening that yesterday was just some minimal flaking.

Sometimes there is just no avoiding it, but it is especially important for immune responsive disease patients to learn good stress minimizing and coping techniques.  It can make the difference between having a short flare and becoming overwhelmed and trapped in a viscous cycle of the flare causing even more stress which then worsens the flare and so on.

Just as it is important for us to live the physically healthiest life possible it is important for us to take ownership of our mental health and well being as well.

I'm off to bed in hopes of getting some sleep tonight.  Thursday I FINALLY have my Dermatology appointment to see if Stelera is an option for me.  I'm leaning to waiting until I move to Phoenix to start it if it is an option as my move is about 60 days away and I don't want to find out I have a severe adverse reaction to it and be unable to focus on my move.  Sweet dreams and happy thoughts all!

You now what I think...ahhh yeah... I wish I did too...

Oh the brain fog.  It's been running rampant in my life the last several weeks.  I've tried to blog several times and get so frustrated that I just quit.  When I try to research topics I can't focus.  When I start to write something I'll forget mid sentence what I was trying to say.  My words come out jumbled, repeated, and just confusing.  The brain fog has to be one of the most frustrating symptoms of many illnesses and side effects of many medications.

Mine is mostly a medication side effect.  I so find when I'm having a lot of fatigue even when I wasn't medicated the brain fog would be mild, but some of my meds have really exasperated that.  When I was on Remicade and a few other meds (honestly can't remember which combo now, but they were a DMARD and prescription NSAID) I'd get "lost" on the elevator at work.  Now maybe if the elevator was in a high rise it might make sense that you forget where you are going from floor 1 to floor 20, but our elevator was between floor 1 and floor 2.  I would get on, push the button and no more than close my eyes and forget where I was going.  I almost quit driving at that point because I would get lost on the 6 mile drive to work and my work is literally on the same street I live on.

Lately on bad days I do choose to just stay home.  I avoid cooking and doing anything that requires any kind of technical skill or dangerous tools like scissors.  These days require forcing myself to stay focused on even the smallest tasks.  Watching the clock so I remember to eat, having a step by step system for showering so I remember to rinse my hair if I wash it, or actually use soap, get money to put next to me as soon as I order food or be sure to only get food that I am eating right that minute so I don't have food out all day.  I don't do laundry because I'll forget and my clothes will be moldy by the time I remember it.  I don't go places because I'm afraid I will get lost.  I pretty much spend most of my day sleeping on the couch.

When you have always been a very studious person it is extremely frustrating to have the smallest things be a mental struggle.  I am lucky that my bad days aren't every day, but a few days a week is too many.  It is also hard for your friends and family to understand your change in ability to communicate, function and follow through.  They are used to you being prompt, verbally acute, and on the ball mentally.  It's just not happening anymore.  Your words don't come out right, if at all, in very basic conversation.

So many chronic illnesses have the brain fog involved.  If you have chronic illness (or take meds) that this wonderful frustration presents itself give yourself a break.  If you love someone who is experiencing it try to remember they are just as frustrated and more with it as you are.

The daily grind

Firstly let me apologize for not blogging much the last week or so.  I finally received my request for documents from the Veteran's Administration and have been pretty distracted with taking care of that.  I also haven't had any blog worthy things going on in my life.  I feel a bit like all I have to say is negative and that isn't good reading.

I still don't have much to talk about, but I wanted to be sure I did let you all know I'm still kicking.  I'll try to figure out some topics to share soon.

Thanks for hanging in there with me.

You are what you eat

Last week I wrote a blog about the pharmaceutical options on the market right now for Psoriasis and Psoriatic Arthritis.  Today I want to discuss some of the diet based treatments that people are finding some success with.

One thing to remember both with both pharmaceutical and natural/holistic treatments is there really is no one size fits all approach to Psoriasis or Psoriatic Arthritis.  It can take a lot of trial and error to find what will work for you and your lifestyle.  Also remember you need to discuss with your medical professionals if you want to do drastic changes or diet programs to help control your psoriasis and/or psoriatic arthritis.

Many people find they do have food triggers.  It may be a full out allergy or a sensitivity that is causing your psoriasis especially to be triggered.

There are a few "diets" that are popular in the psoriasis community, but the one I hear the most about is Dr. Pagano's diet.  The Pagano Organization has information about the program and Dr. Pagano's books.  The basis of this approach is that the psoriasis is triggered through imbalance in the intestinal tract (Leaky Gut Syndrome).  It focuses on diet to equalize the intestinal tract and improve elimination of toxins.

Another popular approach is to do an elimination diet.  This is more focused on potential food allergies or sensitivities.  Generally it is suggested that you eliminate processed foods and foods that are common allergies such as dairy, gluten, yeast, and sugar.  It is also suggested that you eliminate foods that are most common in your diet.  If you drink orange juice ever morning for breakfast, remove citrus from your diet for several weeks to see if you have improvement.  A few web sites I have found useful in both following an elimination diet and still enjoying my food are The Whole Life Nutrition Kitchen and 100 Days of Real Food.  Many people find that jump starting this elimination process by getting an allergy test done is helpful.  If you decide to start the elimination process with allergy testing be sure to let your Allergist/Immunologist that you are getting the test done because you have Psoriasis/Psoriatic Arthritis and you are interested in isolating foods that are triggering issues for you.  This will allow your testing specialist to be sure that they are including as wide a range of food allergens as possible.

One last route that has grown in popularity in the diet department is the juice fast.  If you have watched the movie "Fat, Sick, and Nearly Dead" you will be familiar with this approach.  If you haven't click on the title and it will take you to Hulu to watch it for free.  This program is about resetting your immue system through flushing it out while consuming fresh juices.  It allows you to maximize vitamin and mineral intake and give your system a break from breaking down food.  The documentary is about the best way to get information about the program.  It's very informational and entertaining.  There is also a web site that is a companion to the movie that helps with following the plan called Reboot with Joe.  Again you need to be sure you discuss this program with your Doctors so that you are being tracked and having your vitals and blood work checked regularly to make sure you are doing this in a healthy way.

Some food components that are not actually a full diet program are to limit/eliminate nightshades.  These vegetables are believed to cause flares in many people with both Psoriasis and Psoriatic Arthritis.  WHFoods.com has a fairly extensive list of nightshades HERE, and LiveStrong.com discusses issues with nightshades and Psoriasis specifically HERE.  Many people also find eating anti inflammatory foods helpful.  DrWeil.com has an interactive food pyramid of anti inflammatory foods to give you a place to start.  I realize that some of the foods on the nightshades and anti inflammatory food chart are contradictory, and can make the process confusing, but this is an area that trial and error really comes into play.

One last thing to note is that drinking alcohol is generally considered to be bad for Psoriasis and Psoriatic Arthritis.  Not only is it advised to stop drinking alcohol when you are taking many of the medications used to treat both diseases because they are very hard on the liver, but many people find it is a trigger for them.

Finally let me say that not everyone will find that adjustments in their diet will improve their Psoriasis or Psoriatic Arthritis.  I fall into that category.  I have tried all the approaches talked about above and had no improvement in my diseases.  That being said I do believe that living our healthiest life possible is good for us.  Even if I don't avoid particular foods I do limit processed foods and eat whole foods for the majority of my meals.  I also try to eat a very well rounded diet with minimal sugars and red meat and a lot of vegetables and fruit.

Finding your food triggers can take months of trial and error, but you can do it at your own pace.  It doesn't have to be everything at once if you are not comfortable with that level of radical change.  Pick a few foods and start there.  Always be sure to keep your doctors aware of your process so they can support you by monitoring your health and possibly referring you to a Nutritionist to help you with the process.  Don't view this as losing all your favorite food choices.  It's just changing some of them and finding new favorites that don't disagree with your body.

I hope this helps you all find some places to start your search for diet changes that might help your life be better.

Sweet nothing.

Tonight's blog is inspired by the song "Sweet Nothing" by Calvin Harris with Florence Welch (of Florence & the Machine).

When my daughter and I were driving to/from Phoenix this song came on several times.  She sang it and was obviously touched by it.  To me it was a good song, but didn't really touch me.  It seemed to be about a one sided relationship which we've all been a part of at some point.  The yearning to be heard and understood.  Wanting to believe when someone tells us they care, but knowing those words are empty without action.

As I was driving to meet my honey for our Tuesday poker night the song came on again.  Suddenly mid song I realized this is what I'd like to scream at the medical community sometimes.  I feel like I'm Florence crying out to be heard, but getting lip service about what is in the future to give me relief in my Psoriasis and Psoriatic Arthritis.  I adore my Rheumatologist and he has done everything available to try to help me.  Please don't think I am referring to him in this feeling.  I am talking about the researchers, pharmaceutical companies, and health organizations that give us hope that feels so empty when suffering day in and day out after trying every ware they've sold me.

I look at my last 10 years of care, and the amount of money that has gone into trying to "cure" me is staggering.  A rough estimate of just my BIOLOGICAL medications since October of 2004 is over $400,000.  That doesn't include prescription pain meds, NSAIDs, DMARDs, topical steroids, inject able steroids, doctor visits, or holistic/naturalistic treatments.  I'm only referring to my treatments directly related to Psoriasis and Psoriatic Arthritis. I did have a little over 4 years I would be considered in remission, but here I am less than 10 years from diagnosis of PsA and I am in full blown unstoppable flare.  Lets call it a half million dollars and I am not cured.  I am not improved.  I am not functioning.  It feels like I've heard a whole lot of sweet nothings.

I pray constantly for myself and anyone who has these diseases that we do have hope in the future, but right now I feel like I'm screaming with a broken heart to someone who has empty promises.

P.S.  We've started a Facebook page for Sausage Toes and Scales!!  If you want to be kept up to date on what's going on come like us! Sausage Toes and Scales Facebook Fan Page

A spoonful of sugar helps the medicine go down.

Most of us in our youth sang this song and never imagined that the idea that we might need 5 pound bag of sugar to take all our pills one spoon at a time.  Psoriasis and Psoriatic Arthritis have come a long way in the last 5 to 10 years in respect to pharmaceutical treatments.  We still are a long way from knowing what causes either disease or what actually causes us to be triggered to have them, but we are making strides in the right direction to finding therapies that will give relief.  I get asked a lot of questions about treatments available, and on the message board on online communities about Psoriasis and Psoriatic Arthritis medication questions are probably 60% of the inquiries.

As my life is at a bit of a standstill in respect to my medical treatments I thought I might go through the pharmaceutical options available as of today. I will make a list of links at the bottom for resources as to where I found this information so you can research them further.

Prescription Topical Steroids: These range in strength from class 1 (weakest) to class 7 (strongest). You can find a list of currently used steroids in their class levels HERE.  This is usually the first line of pharmaceutical attempts to treat psoriasis.  These should be used sparingly only on the affected areas of skin.  One of the potential and common side effects of long term use of topical steroids is that the skin in the surrounding area will thin.

Tar treatments:  Many of these treatments can be purchased without a prescription, but some especially for the scalp are prescription strength.  Tar is one of the oldest treatments for Psoriasis.  In prescription strength formulas it is often combined with salicylic acid.  These treatments can be quite effective for many, but they can smell bad and stain clothing and skin.  OTC(over the counter) treatments are fairly readily available in most pharmacies and I've seen several on Amazon.

NSAIDs: Non-Steroidal Anti Inflammatory Drugs. These come in both OTC and prescription.  Generally they are advised regularly for Psoriatic Arthritis patients, but current research shows that general inflammation is predominant in all Psoriatic patients so the prescribing of these may become a common thread for Psoriasis patients. OTC versions of these include aspirin, ibuprofen (Advil and Motrin), and naproxen sodium (Aleve).  Some of these also come in prescription strength.  The National Psoriasis Foundation has a current list of commonly used NSAIDs  HERE.  One thing to keep in mind is that many of these medications can be very hard on the stomach, and can cause liver damage if taken in excess.

DMARDs: Disease Modifying Antirheumatic Drugs. These medicines are usually only looked at if the above treatments are failing or not getting the level of improvement that your Dermatologist or Rheumatologist feels is appropriate.  From reading message boards and talking to other Psoriatic patients it seems that many are jumping straight into the DMARD pool.  This may be because it is  being found in studies that early treatment for Psoriatic Arthritis can be imperative in extending quality of life in patients.  This class of medications includes Methotrexate (MTX), Leflunomide (Arava),  Plaquenil (Hydroxychloroquine), Sulfasalazine and, Ciclosporin. These drugs are used to reduce inflammation and damper the immune system so that it does not continue to attack the body as a foreign invader.

TNF Inhibitors: These drugs are the newest in the arsenal of medications doctors are using to fight Psoriasis and Psoriatic Arthritis.  Enbrel  (Etanercept), Humira  (Adalimumab), and Remicade (Infliximab) are currently approved in the United States for both Psoriasis and Psoriatic Arthritis therapies. Stelara  (Ustekinumab) is only approved for Psoriasis, but is in Phase III studies for approval for Psoriatic Arthritis.  Simponi  (Golimumab) is only approved for Psoriatic Arthritis currently.  These medicines are often used in conjunction with DMARDs, but are generally only approved after use of at least 1 DMARD has failed.  This class of medication is used to inhibit the TNF (Tumor Necrosis Factor).  The TNF is believed to be a primary cause of inflammation in many auto immune diseases.  In patients with Psoriasis it has been found that active skin cells are found to have elevated levels of TNF so these medications are used in patients with only Psoriasis to limit those levels.  These medications also act as immune suppressors.

Narcotic Pain Medications:  These are used frequently especially for Psoriatic Arthritis patients.  Many are a combination of a NSAID and a narcotic element (Vicodin and Norco).  Though Narcotic therapies have gotten a lot of negative press in the recent years because of addiction issues, working with your specialist or a pain management specialist to use these TOOLS to reduce your pain to functioning levels is an option.

I know all this is very overwhelming, especially for someone who is newly diagnosed with either or both of these diseases.  I will do some follow up blogs to give more detailed information on the DMARDs and TNF inhibitors, but I wanted to give some basic information to people who have no idea where to start in their research of treatments available.  These are only the pharmaceutical treatments.  I will discuss homeopathic and naturalistic treatments at another time.

Finally I want to say I am in no way a medical professional.  I am offering this information from my personal experience with both Psoriasis and Psoriatic Arthritis and the research I have done over the years in my journey trying to find relief.  Be sure to discuss your treatment options with your specialist.  Always remember you will always be your strongest (and sometimes only) advocate for your health.  Be informed, be aware, and be assertive!

Links to more info

1. National Psoriasis Foundation
2. Web MD
3. American College of Rheumatology
4. Drugs.com

The "real" pain scale..

The author of "A Girl With Arthritis" was talking about the question many of us hear every time we go to the Doctor.  "how would you rate your pain based on this 1-10 chart?"  The chart every doctor I've been to really doesn't give much in the way of real life detail.  Here is the pain chart that doctors should use.

Why my nails are always painted.

I was trying to describe to my sister what nail beds look like when they have psoriasis.  My thumb picture is a generally healthy nail bed with the pink (nail bed) and white (nail growth) is fairly smooth and straight across the nail. The pinky picture is my worst psoriatic nail. You can see the bed has detached more than halfway down the nail and the line between nail bed and nail growth is  very jagged and uneven.

Reading a history of me.

I requested my medical records from my Rheum for an appointment I have at the VA next week, and to hand deliver them to the SS office for my disability claim.

I picked them up today and started reading. It was fascinating and terrifying to see my decline over the last 6 years. The last 4-6 months shows an especially exaggerated decline. It was also interesting to see things that my doctors hadn't bothered to tell me. I found I have non reactive arthritis (not uncommon with PsA). I found that the Rheumatologist at least at one point felt I may have Fibromyalgia (was never informed of this and it was never followed up upon or officially diagnosed). I found I have had low Uric acid levels (can be an indicator of MS). I found I have proof of arthritis in my SI joint (never informed of this) and FINALLY diagnosed with arthritis of the right hip after YEARS of trying to get someone to listen to me about the constant pain in that joint. 

I often feel like my Rheum is abrupt. I really like that part of him in some ways because he doesn't poo poo around, but I also sometimes feel like he's not really listening to what I'm telling him about what is swelling, how it's affecting my life, how I am constantly in pain. Reading my records I came to realize that not only does he listen to EVERYTHING I say and record it, but there are instant message conversations recorded in the records of him inquiring about following up with how I am, if I need to come in, why something hasn't happened, and a tone of frustration that I am not having improvement.

Even with living this every day it is really shocking to read through my records and see just how quickly I have declined. I hate that my Rheum is frustrated with my condition (lord knows I am too), but it is somewhat comforting that he is frustrated. It shows he cares about my quality of life and I am not just a number. I knew these things to some degree already or I would have left him years ago, but reading it really reinforced that

Sometimes I think I'm losing my mind.

I'm sitting here watching movies, knowing it's going to be an insomnia night.  We had some snow here in North Texas yesterday so I'm quite happy to be snuggled up in the blankets my sister made me last Christmas watching old movies on cable.

Something I noticed the last few days is that I keep feeling like my elbow is wet.  I'm constantly checking to see if I've got a gushing crack in my elephant elbows.  So far it just looks like I've been exfoliating with a cheese grater.  I think I'm probably developing some nerve damage in the dermis from the deep cracking I've been having.  I will be really glad when I can actually get in to see a Dermatologist.  I've run through all my options for Psoriatic Arthritis as far as DMARDS and Biologicals go.  I'm now left with the slim possibility of getting Stelera through the Dermatologist.  It is having success in Phase III medical trials for Psoriatic Arthritis so hopefully it will actually help both my skin and my arthritis.  I'm off to the VA next week to get that whole process started so wish me luck!

I really could use some retail therapy, but I just can't afford it and window shopping is downright depressing. I will however go try my luck this week at playing in a World Series of Poker tourney.  A friend of mine won a WSOP ring and a boat load of money yesterday so now I'm inspired to take my chance on one of the smaller tourneys.  Again I need your luck!

Well I'm off to watch more hokey 90's movies and wait for sleep to decide to visit me.  Have a great week!

As soon as I finished writing this blog I realized I actually was bleeding from a psoriasis crack.  Just not from my elbow.  UGH!