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.

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?

Ready, set GO......ohhhh now wait a minute....

Here I am again on the couch when I should be at work.  I have been described as bull headed by people who really love and care about me, and that isn't necessarily a complimentary trait to have when you have PA.

We are in the process of reorganizing the lab I work in.  It's been going on all week (I'm pretty sure it will NEVER be done).  Anywho, this reorganization involves a lot of moving of heavy equipment, packing, moving and unpacking files and manuals, cleaning etc.  I refuse to let my coworkers be stuck with all the heavy lifting while I sit back, sip my diet coke and watch.  So I decide to take the lightest weight group, the files.  Yes, I packed 25 boxes about the size of cases of paper, loaded them each on a rolly cart, and piled them in the new designated area.  5 years ago this would have been something I considered a decent workout, but by no means the end of the day.  Just this process took me out for a whole day.  Yesterday I sat on my couch, hopped up on vicodin.  I really hate taking narcotics, but it's an unfortunate necessary evil for myself and many people with chronic pain conditions.  This morning I was feeling pretty good and rested (thanks to 15 hours on the couch)  I even got up early, made myself a pico and feta omelet, sipped on a strong chai tea, and shaved my legs while I took my shower!  Today is going to be a good arthritis day!! 

Once arriving at work I started in with the refiling of all those files.  Box after box I lugged them onto my rolly cart, filed them, flattened the box for the recycle bin, and started the process all over again.  About at box 5 I started noticing the familiar burn.  When I was in the army that burn was a good thing.  It meant you were pushing yourself to the max, building strength and endurance.  Now that burn is the precursor to a bad day.  I could feel my feet starting to swell, my shoulders and hips getting that deep in the joint pain and my lower back throbbing.  Due to that old Army mentality that my drill sergeants so dutifully programmed into my head I pushed through.  By box 10 my fingers were tingling, my toes were seizing up, and my feet had swollen enough that my flip flops were in danger of leaving permanent indentations in my feet.  I was pretty sure railroad workers were pounding those ginormous railroad nails into my hips, and my back could have been the base beat at a rave.  Yep over did it again so off to home we go.

On my way home I stopped at Tom Thumb since my day on the couch yesterday consumed all my bottled water.  Any of you that have spent time in DFW during the summer know that the water stinks when the heat starts rising.  I don't just mean the quality but it actually smells.  Something to do with algae in the reservoirs.  Now I'm not really a water snob.  I've drank out of the tap all over the world and survived to tell the story, but my boyfriend is a plumber and has convinced us we really need to drink bottled water.  All that is really neither here now there, but to say I needed water.  I get a stocker to help me load it into my cart (impromptu walker) and waddle my way to the front of the store. On the way I find Ben & Jerry's on sale (score!) so my slow trip from water to check out felt a bit like a blessing and a curse.  At the checkout the nice young man rings up my water and ice cream and of course asks if I'd like help out.  It always amuses me the expression I get when I say "yes, yes I would".  I probably should be insulted to some degree, but I am blessed with a dry, cynical, and sometimes cruel sense of humor.  I tell him I need help and I can see the almost double take, the scan up and down to see what could possibly be wrong with me, and the thought process across the boy's face that says he thinks I'm just a high maintenance lazy house wife.  There isn't anyone to help me right there so he announces my laziness over the intercom.  At this point I'm ready for a full on show of just how screwed up I am.  The poor kid who ended up helping me was either cursing the 20 minute walk to the 4th parking space from the door or thrilled that he got an extra break for the day.

And now here we are.. On the couch, vicodin consumed, Ben & Jerry's in the freezer missing yet another partial day at work.  Someday I'll learn not to "push through the pain".  Hopefully the Humira I started last week will kick in soon.  My daughter said last night that my skin looks better than it has in months so I have hope!

Info on Humira.. One of the biological medications used for PA.