Tuesday, November 26, 2013

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.

Saturday, November 2, 2013

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!