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

New Life not just New Year

Happy Holiday's from Phoenix!  I hope everyone enjoyed their chosen celebrations and festivities.  I am really having a great time with my family.

With the new year quickly approaching I know many of us make New Year's Resolutions.  I've never been one to make them.  I believe every day is a good day to start fresh and move forward so making a point of doing it because it happens to be January 1st seems silly to me.  This is compounded by the fact that most people have abandoned their resolutions by the middle of January.

All that being said I've done some thinking the last few weeks.  This past year has been a year of acceptance for me.  I've come to accept that many things will never be the same for me.  Acceptance isn't always a let down, but it can be a  struggle to reach.  In my pondering this week I've also come to realize that many of the most important things in my life (besides my family) will just take a different course of action in many cases.  In some cases things will actually be the same.  In a discussion with someone the other day about helping the homeless I realized that my past habit of keeping fast food gift cards, water, and personal hygiene kits to give out is still something I can do.  I may not be able to do my work that I trained to do, but there are many things that I can do at my own pace such as write, do arts/crafts, create recipes, and counsel people through their struggles with Psoriasis and Psoriatic Arthritis.  Yes those things will have to be at a moderated pace to allow for my disease and it's fluctuations.  Yes I may not be able to make money or as much regular income from them, but these are all things I can do to help support myself and others.  I've always been a resourceful person so now that doesn't change.

So for me this New Year I won't focus on a new year resolution, but I will be focusing on a New Life path.  I will have struggles. I will trip and fall occasionally.  I will also succeed and find happiness along the way as well.

May the New Year bring you joy, happiness and fulfillment no matter how you choose to go forward.  Remember that no matter what, tomorrow IS another day!

Happy New Year!!!

My oldest Daughter and I enjoying Apache Junction.

One of the many ginormous cacti.

The Superstition Mountains

Another view of the Superstition Mountains.

Itch Itch Itch...

Last week I thought my skin was getting better.  Tonight, I'm not so sure.  I have to admit that since starting Butrans and Arava I am feeling better overall.  I do need 1-3 naps a day and that is with getting a good 7 hours of sleep at night.  However my pain level is now what I would call livable.  The pain isn't gone by any means, but most of the time it's at a level of annoyance.  I do still need to take a vicodin every few days, but I was taking 2-3 a day most days before the Butrans.  That is a notable improvement in my book.  I also notice my brain is a bit more scattered.  That is probably the Butrans since it is giving me a steady dose of a synthetic morphine all day every day.  ANYWAY back to the skin.  My hands were looking SO much better.  Still scaly, but no splitting or bleeding.  The scales were also less thick on most places I have scales.  Today though I noticed the scales are getting worse again.  My hands, scalp, feet, and ears are feeling like I've got hives, but no such luck.  It's just psoriasis.

I have my Simponi shot next week.  I am not holding out much hope that it is going to do anything at this point.  I've accepted that I won't be returning to work, and honestly with the Butrans lowering my pain levels, at least I can have a level of comfort I haven't had in over a year while I'm not working.

SO now it's time to practice what I preach and do some occlusion, limit my internal stress, and find some external focus.  I think I'll be doing a lot of reading about the disability system.  If only I can stay awake long enough to get through it.

Yank my joints out all "predator style" and stuff

^^I was feeling like this last night and for those unaware this is a "Predator"^^

Today it’s been 4 weeks since I've worked full time.  I still haven't gotten into any kind of schedule, but a few things are getting there.  Tuesdays are my grocery day if I’m not having a flare affecting my feet or knees.  Fridays is my go out to lunch day, again pending knee foot issues.  I love banh mi sandwiches from my local pho shop so I've been having lunch there every Friday.   They have great food and are happy that the white girl likes Vietnamese style coffee. 

I’m a planner and like structure in my life so I still feel like I need more of a schedule.  I had hoped that with less stress and more sleep my illness would improve, but the reality is if anything it’s worse.  I went yesterday about the breathing issues I had been experiencing, and since quitting smoking (yes I do have a drag here and there when I’m out with Mickey)my lungs are actually stronger and better looking than they have been in years.  I had clear lungs, the xray was clear, 98% O2 levels, EKG was good and high end of normal on the lung capacity test.  The decision has been made to send me to a cardiologist just to be on the safe side.  I told the Dr that my pain is constant so he prescribed me a Butrans patch.  It is supposed to be less powerful than Fentanyl, and I will be able to take vicodin on days when I am in REALLY bad pain(HA, that’s every day lately), but should give me more constant relief  with a steady stream of narcotic in my system.  He also cleared me to start taking Arava.  So I got home feeling a bit dejected with all the lack of any news good or bad.  I mean I don't want bad news, but at least with bad news there’s a direction to go in.  Anyway I slapped my patch discreetly above my voluptuous butt bump, and downed a Arava pill.  About an hour later my system had a rebellion.  I’ve experienced these feelings before when I was on Remicade.  It is like every nerve in your body has little needles and anywhere your body is touching anything is getting needled, also every joint has a sudden flare so there isn’t a bad joint, they all hurt like hell and then comes the fever.  With Remicade I would leave the Dr’s office after my infusion and get home, crawl up in the fetal position, and moan myself to sleep.  This reaction has no “fatigue” at all.  If anything I’m hopped up and zooming.  I figured since I was going to be in this torture at home or out I would go try to play poker.  The hope being that some social interaction would give me some distraction.  Also besides the grocery store, Dr, and 3 hours at Urban Crust I really hadn’t left the house since Sunday morning. It was time to get out and be social.  I sucked at poker as usual, and stayed a bit to spend a little time with the boyfriend, but by 9 I was ready to go home and resume the fetal position with crying added to the ritual.  I really wished I could remove all my joints “predator” style (You’d have to see the movie to get it).

Upon waking this morning I do feel better.  I’m not sure if the Arava or the Butrans was the reason for the reaction.  I took the Arava this morning and not having the extreme reaction of yesterday.  I am still pretty flared up everywhere, but the fever and nerve pain has stopped.  I won't know which it was till I change the Butrans patch next week, and may never know for sure which caused it.  My bet’s on Arava since it was SO similar to my Remicade reaction.  You have to remember when you have these immune diseases that are your immune system over working that they are going to react to medications designed to suppress them just as they would a virus.  Having an initial reaction to DMaRDS and Biologicals or even a recurring reaction like I did with Remicade is not unusual or unexpected.  It does suck and it is your and your doctors call if these reactions are livable or not life threatening.  On Remicade I’d still tell you I’d gladly give up 1 day out of 30 to function and even excel the other 29 and I’d do it without a second thought. 

So there you have yet another ride on the side effect roller coaster.  I’m going to finish eating my sandwich, egg roll and Vietnamese style iced coffee and get to work on my novel I was supposed to start yesterday.  I’m now 4000 words behind.  As you can tell I’m a bit long winded so that shouldn’t really be a problem.  See y’all soon!

 No idea what's going on here, but this came up in the Predator movie google search.  I say you go Danny Glover!  If I'd just survived what you did in both Predator and putting up with Mel Gibson in 3 Lethal Weapon movies I'd think about giving the other team a trial run before the world ended.

Happy Halloween!

Halloween has always been one of my favorite holidays.  I'm not a big costume person, but I like the ghosts, witches, goblins, zombies, orange, purple, black.  I could go on and on.  I love making my house all Halloweeny.  When my youngest daughter moved out a few months ago I gave her all our Halloween decorations because it's her favorite holiday as well.  So I've been looking for good deals the last month or so, and though my decor is minimal I'd like to think it's "classy".  OK, classy for me hahahaha.  I'll be haunting all the stores for clearance Halloween next week to see if I can find some "I'll die if I don't have that" super deals.

I have an appointment with Dr Lavery tomorrow to see if we can find the cause of my "shortness of breath". I kind of feel like I should have just kept smoking.  I miss smoking even if I don't miss feeling like I've been licking the cat box every morning or hacking up yuck.  I also know I stunk because of it because I can smell the stink now on anyone that smokes.  I guess I don't really miss that.  Not high up on the sexy scale there is it?  At any rate I'm not smoking and I miss the act of smoking.

I have also come to accept that I probably won't be returning to work in January.  I will be discussing filing for Federal Disability with the Dr tomorrow too.  In an effort not to have a huge pity party about this I have been dream real estate shopping for a house in Phoenix.  I've decided I'd really love one of the small houses that are there from the 40s-60s.  I love the architecture of these houses.  They are in my price range even with the electrical and plumbing updated.  I think when I am there in December for Christmas I'll see if my daddy will do some driving around with me to see what areas these houses are in.  If I can find something in a safe neighborhood that has the safety update done AND in my price range it would be awesomesauce!!!  I'm not ready to buy yet, but I'm a planner.

I'll be sure to come back on after my appointment tomorrow and let you all know what is going on, or at least as much as I know.  Have a happy and safe (and a little creepy) Halloween!

Here comes winter.

Now I realize that temps in the 40's are NOT that cold, but I've lived in Texas for 10 years now and have developed thin southerner skin.  Cold does not usually bother my arthritis, but winter is always a bad time for my psoriasis.  The air is generally dryer in general, and having heat on in the house on top of that just sucks any moisture there is out of your skin.  I am not looking forward to it to say the least.  My skin is already worse than it has ever been as it is.

I was reading a post on Inspire this morning.  It was about the whole health benefit for chronic/immune disorders, specifically emotional well being and it's effect on your total health.  Part of having this illness is that people don't understand how devastating it can be because you look fairly normal.  Everyone has some relation or friend's relation who has psoriasis or eczema and they are fine.  Yes it's hard on your self esteem, but no reason for you to not be able to work!  What people don't understand is that the systemic swelling involved with Psoriatic Arthritis affects joints, tendons, ligaments, and according to recent studies organs and functioning systems such as circulatory.  What they also don't understand is it isn't isolated.  I don't have pain, swelling and damage isolated to my hands.  If it was I could probably find a way to adapt and be employable.  I do adapt every day.  ANYWAY I have wandered away from my purpose.  The benefit of emotional health.  Since I have been home on medical leave I have noticed some things.  My physical health has not improved.  I had 1 good day, and I LOVED it, but day to day I am not having any improvement in my arthritis.  What has improved however is my state of mind.  I am getting sleep when I need it or when my body allows it.  Yes I am still having a lot of insomnia, but on days I do have insomnia I can sleep later or I can take a nap.  It does not dictate my level of functioning for the whole day or the whole week because I am sleep deprived.  My stress has reduced SO much.  I don't feel guilty about missing work, I don't worry about not getting my work done, I don't worry I am going to lose my job because of my absences, my worry has dropped and changed.  People ask how I'm doing, and I still generally just say, "I'm OK, how are you?".  The truth is that in my head I'm GREAT!  How do you explain that to people though?  So many people think this is all in your head anyway.  As usual I have developed pretty tough skin so I generally don't care what other people think.  I do wish I could educate people.  Someone call Phil Mickleson and Kim Kardashian and tell them to get with it to educate people.  We are the 1%! (ha ha couldn't resist with the political stuff going on right now)

At the end of the day I am glad I decided to go on medical leave.  I am realistic that my psoriatic arthritis has gotten to the point that I will probably not work a traditional job, especially metrology, again.  When it's all said and done even with my physical health in the crapper my mental health is good.  I am well rested and optimistic.  That is SO much better than I was a month ago.

Thank God for Netflix and Pinterest!

Yesterday when I woke up I felt good.  My pain was at a manageable level, I had good energy, I felt positive, and when I got on the scale for my Monday weigh in I'd lost another 3 pounds.  I pretty much attributed it to the steroid shot my Dr had given me last week.  I get the shots for my bursa in my hip usually, but they tend to have the wonderful side effect of making my skin better and giving me some relief from arthritic swelling for a few weeks as well.  Apparently I was wrong.  I woke up this morning at 4 in pain.  I read for a few hours and finally dozed back to sleep at around 8, and slept a few more hours.  Now I am in full on flare.  My hands are stiff, the bridge of joints at the base of my toes on my left foot is swollen enough I can't wear shoes, my lower back is throbbing and my right shoulder feels like someone is sticking hot pokers in the joint.  So much for my grand plans of organizing today.  It is going to be a couch, heating pad, surf the net and watch netflix day.

This part of psoriatic arthritis is one of the things that is really hard for people to grasp.  Not only will it flare up out of nowhere  but you never know where it will flare up.  People think sick people are just sick.  Meaning that they are always sick the same way.  When someone says they have arthritis people understand there are affected joints.  They expect to see gnarled and swollen joints, but they expect it to be in a specified place.  They expect you to be able to know the ways you will be limited in specific terms.  It is hard for people to grasp that at 41 some days I can walk a mile, some days I can't even put shoes on, some days I can do things that are very fine detailed work requiring fine motor movements with my hands, some days my fingers are frozen into the claw or swollen so I can't open a jar.  It's not how sick is supposed to be defined in people's mind.  People like to have parameters to fit things into their specific boxes.  Psoriatic arthritis just doesn't play well in that box.

So after a good day yesterday, it's a couch day today.  I think I'll change out my wax melting smelly thing to a new scent.  Something sweet and spicy.  Netflix here I come!

Follow the yellow brick road.

Who doesn't like (love) the Wizard of Oz?  It has some message for just about all of us of finding what we feel we have lost.  Most haven't really lost it, but just forgot what it was to begin with.  For me at this minute that thing is purpose.  I'm on the first day after having my medical leave approved and I know if this is going to be my next 3 months my next medical leave will be for mental issues rather than physical.  I did the obligatory sleeping in, had my cup or 3 of tea, sat on the porch and watched the birds, considered what to do for lunch since I slept through breakfast, had a discussion with the cat about global warming (she thinks it's a bunch of hooey by the way, her thoughts not mine), and thought about taking a shower so I don't stink when I do finally decide what to do with myself.

I've got some small projects around the house that I have been wanting to do like getting my stuff in my storage closet in those plastic stackable totes so when I move they will be easy to pack and stack.  That of course takes assistance to some degree so will probably not start till a Monday after I can have my boyfriend help me get the stuff out of it's current location.  I've also played with the idea of writing a cookbook for 1 for years.  I knew my time of empty nest was coming, and never really envisioned living with a significant other so figured I'd enjoy experimenting with that a bit.  I've also had a novel or series of novels bouncing around in my head.  With the popularity of Amazon Kindle marketplace I can self publish.  That project may very well take more than 3 months to get the first edition done so I'll probably wait till I'm on full on disability to tackle it, but I could at least get some outlines started.

I guess I need to find a direction.  I'll get a schedule of some sort started on Monday so I can keep track of my days and motivated to move to the next thing.  I'm a hope for the best, but prepare for the worst kind of gal so I've got a move to prepare for (in reality that's the best, but because of the worst).

Now I'm off to shower and laze around watching netflix till I have to take my car in for a warranty repair.  YEAH!

Focusing on me.

I had my Rheumatology appointment today.  It was agreed that it was time to take some medical leave.  I am on leave for 3 months.  The hope being that in that time I can focus on my health and the Simponi might just kick in.  This is pretty much the last ditch effort to keep me employable.  At this moment I don't hold much hope, but maybe in a few weeks once I'm hopefully more rested and less stressed I will feel differently.

I have known this was coming.  Even yesterday I was positive this would be the result of today's appointment, but it still took the breath out of me when I left the Dr and had a moment alone in my car.  I had a good cry on the way home, and now I'm decided to just let myself feel.  I'll start dealing with reality tomorrow.

Being the holiday season is quickly approaching us I'll have lots of things to keep me occupied.  I'll need to set myself some kind of loose schedule to keep track of the days and not wallow in self pity.  How do others in this situation fill their time/track their time?  I am lucky that my misery has some company.  Not that either of us are really lucky we are each other's company, but I do feel fortunate that I know someone who's been through this before and who will help me with advice and emotional support any time I ask.

For now I'm off to watch some sappy chick flicks, ice my bursa that had the horse needle plunged into it and  maybe take a nap.  Tomorrow I will face reality and come up with some sort of plan.

Raindrops on Saturday

It's a rainy Saturday in the DFW.  When I started feeling the rain pain yesterday morning I looked at the radar and this front is a doozey.  It went from the edge of the DFW west to almost Tucson, AZ.  For those that aren't up on their geography of the US it's fricken HUGE!

Since I'm TV'd out after 4 days of pretty much living on my couch with the fall out of the TDAP vaccine I decided I would so some surfing on the net. I noticed this morning that my glands were swollen and I had a mild sore throat.  Not enough to panic, but I realized that about a week into my shot last month I felt the same.  So off to research Simponi some more.  Apparently it is a typical, but not common side effect (whatever that means).  I found a message board I hadn't found before that covers many chronic diseases, and has a PA specific area.  I got to reading it, and the stories about people with Psoriatic Arthritis and Psoriasis hit way too close to home.  The people who feel exactly the way I do about running out of options, frustration, fear, on their last hope with current medications to be able to work and live functioning lives is just heart breaking.

One of the saddest things is in order to properly focus on your illness you really need to not be employed.  Reduce stress, prepare/eat whole natural foods, intensive skin care, and rest along with any number of other benefiting factors are what you need to do to reduce your body's attack on itself.  In order to financially support those things AND maintain medical and pharmaceutical care you need to have a job.  Knowing that your options are running out in a time that you can actually imagine is terrifying.  It is all a vicious circle.

As to today's video selections they really have nothing to do with anything besides that Rhianna was going through my head when I was listening to the rain on the patio.  These songs actually remind me of the 2 Nicole's so here they are for them.  They each know which one is for which.  Love and miss you both!!  Wish you were here to hold my umbrella puddin butt!

That's what friends are for.

Last night was Vagina night.  The girls gathered as we usually do on the usual patio and enjoyed our weekly visit.  I asked about my blog.  I knew at least one of the ladies has been reading it, but I was curious how I was doing, and getting perspective from people who know me well enough to know I don't want smoke blown up my ass.  I wanted an honest opinion.  They gave me some good input and I was pleased to hear that the overall impression was good.  During this conversation things turned a bit with one friend.  She said that she felt that I wasn't a good friend because I didn't share my feelings about my pain and the struggles I go through every day with them every week when I go to Vagina night.  She felt that I was holding out and therefore didn't value the friendships we all had enough to share these things.  Now I am saying how I interpreted what she said, but that is the condensed version of what was said.

We all have at least one friend that only calls on us when they need something, or is always negative.  That friend that we wonder why we are friends with them at times.  Who wants to be the sounding board for constant negativity or the constant support system?  Yes friends are there to help us, to listen to us, to support us, to be there in the good and bad times, but when there isn't a balance it devalues the friendship (in my opinion).  I do not want to be that friend.  Yes I have issues. Who doesn't?  I do share things when I'm having a particularly rough time with my children, work, boyfriend, or something unusual in my life.  Generally, however, I am a pretty private person.  I have maybe 3 people in my life that I share almost everything with.  1 is my sister and 1 is my boyfriend, otherwise I'm not a open person about things I feel are close to my heart.  That being said I don't even talk about my pain issues all that much with my sister or boyfriend. 

I guess this comment really got under my skin.  I don't think it was said in a cruel or attacking way, but it was said in a way that my friend was hurt that I didn't "trust" her enough to share constant pain with the group and her during our weekly venting sessions.  I guess the reason I decided to actually bring this up was to try to explain what I choose to keep to myself and why.  I have thought about it almost constantly since last night.  It literally kept me awake thinking about it.  I value my friends more than they will probably ever realize, and that my lack of sharing is taken personally in a hurtful way disturbs me.  Probably mostly because my introverted private ways aren't going to change.

I have other friends with chronic illnesses and yes we occasionally have a sharing session about these illnesses, but I think most of them would agree that having that illness be a regular topic of discussion is just not desirable.  We deal with these issues 24/7/365.  When we venture out on a good day we want to escape that. We don't want to whine about it (usually), we don't want to dwell on it, we don't want to give educational seminars on it.  We want to enjoy a night away from it. 

I think part of the reason I decided to do this blog, beyond camaraderie with other PA patients, was to let people have a glimpse in terms they can understand into what someone lives with when they have a chronic illness.  It is hard to empathize when you have no point of reference or personal similarity.  So yes when I am out or with my closest friends I am not sharing my day to day challenges, but I hope that you will read this and be able to understand why I don't want to talk about it all the time.

To my friend, I'm sorry that you have been hurt by my lack of openness over the years.  It is not a reflection on how I feel about you, our friendship, or my level of trust in you.  You have been a great friend to me, and I enjoy our friendship.  I promise that if a day comes that I truly need your help I will call you.  I promise if there is something in my life that I need to talk about I will share it with you.  I will however continue to be a private person.  I will continue to be as positive as I can be.  I will continue to not dwell on the negatives of psoriasis, psoriatic arthritis, and pain the majority of the time.  This is how I am able to function and live the best life I can.  This is how I keep my sanity.

Thank you for being my friend.  You and all the other Vagina ladies are my rocks even if you don't realize it.  I love you guys!

I got a new drug.

So in the last 24 hours I have gotten the Simponi approved and received my first dose from the UPS guy.  I will be taking it tomorrow so fingers crossed!  I also got my FMLA approved.  Now I will probably lose about 20% of my income because I don't get paid for FMLA days, but I also won't get fired for my absences.  80% of something will always be better than 0% of nothing, right?  Also if I'm making 20% less  my kids might actually qualify for some federal student aid.  LET'S GO PELL GRANT! 

This week has been a pretty moderate pain week thankfully.  I haven't needed a vicodin since Monday.  Now this isn't to say that I'm not in pain.  It just means my pain levels are manageable without narcotics for now.  Something I have found people who don't have chronic pain can't wrap their minds around is how people with chronic pain perceive pain.  I personally haven't had a day without pain in so long that I can't remember what it was like to be pain free.  People in my life will frequently ask me if I'm in pain.  If I answer honestly my answer would always be yes.  What doesn't factor into the black and white answer is the fact that when you have chronic pain you learn to have a level of "acceptable" pain.  It's still pain, but you don't really register it anymore unless you focus on it.  It's like if you work in a building that has a piece of machinery with a constant hum.  Do you hear it?  Yes, if you think about it and acknowledge it you hear it, but on a day to day basis you learn to kind of ignore it and it just becomes that white noise you don't really hear anymore.  This is part of the reason that having mental coping mechanisms can be so important.  It can be a quick flush down the toilet of life if you let the pain be a focus for too much of the time.  It can become all consuming.  It can drive you to being mentally ill on top of physically ill.  It's a delicate dance to manage your pain, your mental health, be mindful of your medications and their side effects and living a somewhat normal, all be it adjusted, life.

As I've said  before reading is one of my coping activities.  I also practice that deep breathing "in through the nose, out through the mouth" used in both Lamaze and yoga.  Funny both those things use that breathing practice as my experiences with both have had extreme and painful results afterward.  Anyway,  know your comfort positions.  Mine change over time and depend on the particular joints having a bad day.  When it was just my hips I would sit kind of Indian style and then lay back.  This stretched out my hip flexors and forced my back into a more comfortable arch.  I could sit like that and day dream for a good hour at a time.  Yes I looked a bit crazy dropping down on my coat on the floor of the airport, but it sure felt a lot better, and those long boring layovers were much more tolerable.  Laugh.  This one is a universal mood enhancer.  I'm blessed with the ability to find humor in the not humorous.  Much to the dismay of many people around me who find it impolite, but none the less there has to be a reason for inappropriate humor.  Maybe my arthritis is the reason.  No matter what's going on I can usually find something humorous and inappropriate to say or think.

So to end today's blog I'm asking everyone to keep their fingers crossed that not only does Simponi help my arthritis and my psoriasis, but that it doesn't bring on the side effects from the depths of hell.  I'll take a few minor ones, but I'd rather not gargle glass, be bald or get pneumonia.

This will not be my Kryptonite!

Since today was a rather busy day for me at work I am pretty pooped, and don't really have anything amusing or personally PA related to share.  I thought for today I would share some of my own tips, tricks, motivators, and crutches that get me through the days, weeks, month, years.  Because this disease is so individualized I realize that there are no universally applicable tricks, but maybe something will give you a new method to try.

One place on the net that I have found inspirational and informative is the "But You Don't Look Sick" web site and the Spoon Theory.  This place is a gold mine of greatness not specifically for PA sufferers, but anyone who has an illness that is "invisible" from the physical and mental plethora of diagnosis.  The message boards are a great place to find support and information or just to vent on a bad day.  Even if that bad day has nothing to do with your illness.

Find a brain activity that you love.  Mine is reading.  I can read for days.  In fact I can forget to shower and eat because I have gotten so engrossed in a book.  One of the problems I have found with chronic pain is the sensory overload that is caused from constant activity of my nerves responding to pain.  Reading doesn't stop pain, but it does distract me from it to some degree.  I sympathize with the problem of pain being so distracting that you can't focus, but I started small.  I committed to reading an hour a day.  No matter how much pain I was in or how distracted I was because of it I would get through that hour.  Now once I get started I can usually zone out some of the pain because I am focused on the book. This works for me versus say watching TV because I have to be actively mentally involved.  It doesn't end up being white noise (like TV) that I space out through or pretty much ignore because I am focused on my pain.

Find a "beauty routine" that makes you feel pretty/handsome.  For me it's giving myself a manicure/pedicure.  I might feel like my skin is gross on any given day, but my nails are fantastic!  Before my skin got really bad I went to the salon for a manicure and they said my nails looked like acrylics.  I spend a lot of time on my nails in the scope of all my other beauty "routines".  I am one of those girls that can be up, showered, dressed and out the door in less than 20 minutes.  I do look forward to my me time with my nail polish.  Sometimes I really splurge and have a good long soak in the tub before my mani/ pedi.  At any rate, I get a lot of compliments on my finger and toe nails despite the scales.  The added bonus is that it covers up the ridges and psoriasis I have under my nails as well.

Comfort foods!  Many people have food triggers for their psoriasis.  I am fortunate that I don't seem to have any.  It is just bad all the time.  Sometimes the most basic comforts are the greatest thing ever.  Whether it's mashed taters or ice cream if it gives you comfort it can't be a bad thing in moderation. 

Be your own health advocate.  This is one thing it took me a while to figure out.  So many Dr's have told me how my body is supposed to be behaving or reacting.  I've been in this body for 40 years and I know what is not "normal".  Be aware of what therapies are out there.  If your Dr isn't interested in allowing you to try new, holistic, or different treatments, or stop, start or change medications because they know what's best for you and your body, it may be time to find a new Dr.  I'm not discounting any Dr's expertise.  We pay them the big bucks because they are the experts, but YOU are the expert on your body.

Allow yourself to have a bad day.  I hate to fixate on how PA affects my life, but some days it's good to just let it all out.  When I had cable I'd spend a day watching Lifetime movies and Reality TV shows.  The lifetime movies allowed me to cry.  I am not a cryer, but put on one of those movies and the flood gates open.  The reality TV lets me see that my life isn't the worst train wreck going.  I might be scaly, sore and irritable, but I'm not on Jersey shore.  I also have a venting friend.  She has pain issues as well so we let each other complain with no holds barred.

Finally find your joy.  We all have something that no matter what happens in life there is something that universally brings us a level of happiness.  Whether it's your family, your pet, the color purple, or a special place in your youth, find something that you can think about that brings you peace and happiness.  Multiple things are even better!  When your having a bad day have that picture of your favorite beach you found shells on as a child and remember how much you loved that.  Don't think about the future, your pain, your frustration or anything else.  Think about joy.

I am sure there are many others, but these are a few things that work for me.  What are yours?

Just left of "normal".

I received a call from the specialty pharmacy that sends Humira to me.  They were checking in to see how I was progressing since I started taking Humira.  This was before the miracle big toe discovery, and at that point I really had nothing to report so they went through a series of questions.  How does my arthritis effect my daily schedule?  Does it limit dressing such as tying shoes, buttoning buttons?   This series of questions made me realize that even though I have made alterations to my life to accommodate my condition, I sometimes don't realize how much.  Some things are small changes.  They become ingrained into your daily life so much that they don't seem like accommodations as much as just the way it is.  Until someone actually points it out to you, you forget that anything was ever different.

One example is buttons.  Does my arthritis affect my ability to put clothing on because I can't button buttons?  Well actually no.  Not because I can always button buttons, because I can't.  It doesn't affect my life because I just don't do buttons anymore.  I have maybe 2 shirts in my closet that have buttons and they've been hanging untouched for about 2 years.  I buy my jeans a size too big so I don't have to deal with the button, I can just pull them up already buttoned and zipped.

This got me to thinking about how many things I've adapted in my life to accommodate my growing limitations.  I still cook and I love to cook, but I don't do any fine chopping or cutting anymore.  I don't hand whip and mix anything anymore.  I have bought a stand mixer and 2 sizes of food processors to do these things now.  Yes I realize these are appliances that many people without limitations own, but my whole purpose in purchasing them was because I needed them to continue doing something I love.  I almost always wear flip flops, sandals, or slip on shoes.  Not because I live in Texas and it's required shoe attire, but because tying shoes is nearly impossible on days my hands are swollen and stiff.    There are a lot of days when I just can't get my feet into shoes, but shoes I can slide on and off are doable for times I have to go somewhere.  Every purchase that has to do with daily living has some adjustment for my condition.  I switched from a manual transmission car I loved to an automatic. I bought a bed that is high enough that I can ease down onto my feet in the morning and isn't too high so I can sit on it without effort.  I also have learned not to be quite so OCD.  If don't have to vacuum and dust every Tuesday,  I don't need to scrub the grout on the shower every third Saturday.  I do these things when my body feels up to it, and that is OK. 

All these things are just part of my life.  I don't think about them anymore.  It's usually unconscious decisions because this is how my life is.  I once had someone ask me how I could be OK with how much my life has changed especially over the last few years.  My answer after some thinking on it was that we all have something a little left of normal.  We all make adaptions in our life for that.  We don't stop living. We adjust, adapt and overcome.  We celebrate life for it's blessings and joys, and try to not let the bad moments be the only thing we dwell on.  Life goes on and so do we.