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!