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.

Oh If everyday was like this.

Today was a good arthritis day.  It is one of those days that, though I have the normal morning stiffness, I feel relatively normal after about 2 hours.  Granted normal is a relative term, but for me normal enough that if I was working I could have done a full day.  I felt an unexpected level of guilt today because I am on medical leave, but experiencing an uncommon good day.  As I was walking through Whole Foods getting my weekly groceries it dawned on me that yes I'm having a good day, and yes I could have worked today, but 1 day in the last 30 is not employable.  It is not a glimmer of light.  It just happens to be a good day which I am SO grateful for.

Speaking of Whole Foods, Oh. My. God!. I think I had an orgasm in my mouth when I tried their made in house roast beef.  I am SUCH a roast beef snob.  If it has that weird rainbow glimmer that most processed meat has it makes me nauseated just looking at it.  This stuff was perfection.  They had 2 varieties and I went crazy and got a half pound of the italian herb rubbed roast beef.  Shaved so thin you could almost see through it.  It is worth every penny of the $16/lb they are charging for it.  Now keep in mind that my half pound of meat heaven is enough for me to have sandwiches or wraps all week.  That works out to about $1/day.  I worked out the total cost of my roast beef & provolone on sourdough with green pepper and red onion sammich.  It came to $1.40.  SO worth it.  Another bonus of whole foods is they let me get fresh loaves of bread in half loaves AND sliced for no extra cost.  I think my half loaf of fresh sourdough was $1.49.  I'll use a half a loaf in a week, but a whole loaf I throw half of it away.  I've tried freezing half, but it feels like I'm chewing rubber when I thaw it.

I guess I'm done discussing food and how much it costs to feed me for today.  I sure hope they have whole foods in the Phoenix area.  I am ok being a food snob when I'm only feeding me.  I am a whole food eating hippie food nazi dammit.  Deal with it!

So here's to hoping tomorrow will be 2 good days in a row.  Since we are expecting a weather front including rain on Thursday or Friday I'm enjoying any minute of mobility I can!

P.S. Here is my daughter and her best friend.  The crazy one belongs to me... ohhh like mother, like daughter :)

OH MY GOSH I LOVE CABLE!

I've been offline a few days because I was in between Internet providers.  I could have blogged from my "smart" phone, but arthritic fingers and touch screen typing on a more than twitter length entry is just NOT going to happen.

I had my appointment to get Internet AND cable with Time Warner Cable.  Let me just say that I remember why I left them.  My appointment was 8-12.  It seems that the cable company can't commit to a tighter time frame than 4 hour chunks of time.  As it turns out they can't even keep that commitment.  A bit after noon I got the call that there had been a vehicle breakdown, and my technician would be by before 1.  Around 1:30 I was getting REALLY irritable.  A storm was coming in so in addition to my generally impatient self I was having steadily building pain and swelling.  I called customer service to find out where exactly was this tech and when exactly would he be arriving at my home for my 8-12 appointment.  I was told he would be there by 2.  The tech pinkie promised it would be so.  At 2:49 the knock FINALLY came.  He didn't have the right modem, and I misunderstood the channels I was getting.  The tech "didn't have time" to upgrade my channels, but he happened to have the right modem in his truck.  Needless to say I was still a very angry, in pain cranky pants.  I did some errands and cooled off a bit.  I decided since I had experienced 2 of Time Warner's forms of service and been astounded at the level of crap it still was I would try the third.  Internet chat customer service.  I'm pretty sure the first person I chatted with was in India.  She wasn't bad, but pretty minimally basic in her responses and the typical typographical errors you see in people who are not native English speakers.  She decided to send me up a level.  The next person I spoke to was AMAZING!  She restored my faith in humanity.  In 20 minutes she had me upgraded to the right stations, threw in a year of Showtime for free and said she would forward my complaints to the local offices responsible for my issues today.  Do I really believe she'll forward my complaints? no.  Am I watching free Showtime right now and never leaving my couch ever again? yes!  I didn't even have to pull out the service connected disabled girl card!

Now on to psoriasis stuff.  I took my last shot of Simponi on Thursday.  I see no improvement anywhere.  My hands itch like crazy and are cracking again.  SO attractive.  My feet have gotten more pustular spots, but luckily the majority aren't rupturing.  They burn and itch, but the danger of infection probably isn't worse than usual with the regular plaque psoriasis I always have on my toes.  I've found if I waddle on the outside edge of my feet it doesn't put as much pressure on the actual pustules   Of course my ankles are not happy with that, but I told them to shut up and suck it up for the team.  The Dr prescribed me Arava, and once I get the results of my Hepatitis screening I'll give that a try.  I'm a bit scared of it so this is why I am using my hep screen as an excuse to wait to try it.  I should be started by midweek and will be sure to give you all the side effect breakdown as it happens.

I think that gets us up to date after my little forced hiatus.  I'm off to go watch some more Showtime and read up on Pintester so as I look for things on Pinterest to entertain me while I'm on medical leave, I don't do the disastrous   The Pintester "fucks up pins so I don't have to" and I will be eternally grateful I didn't try the strawberries & cream mug cake. See her facial expression below.

It's poison time!

It's shot day. Hard to believe it's been a month already since my last one. I still have seen NO improvements. My psoriasis is actually still worse. I've developed pustular psoriasis on the bottoms of my feet. I have had fairly mild pustular psoriasis on my palms before and it was irritating there, but not life stopping. When it would rupture I could clean it, put some antibiotic ointment on it, and slap a band aid on it and it would be fine. On my feet however it's a whole new ball game. It runs up the middle of my feet and on my left foot actually has a few spots at the top of the ball of my foot right where it meets my toes. I've had a few spots rupture including one by my middle toe, and it is painful. Luckily it isn't too painful to walk most the time yet, but if the rest come to roost all at once I will be a very cranky and highly medicated person. Mostly now it just goes through phases of feeling like the spots are burning. Somewhat like walking barefoot on black concrete in the 115 degree AZ summer.


Since I'm having no improvement Dr. Lavery wanted me to try Arava. It is in the DMARD class of meds and should suppress my immune system even more. I waffled on if I was on board with this, but finally gave in yesterday and had him call in the prescription. I will start it on Monday. I don't want to bombard my immune system all at once with the Simponi and a new drug tonight so I'll give my system time to equalize a bit with the Simponi shot and give it the wham bam of Arava on Monday. For anyone wanting information on Arava it is here. It does have a black box warning so be sure to read EVERYTHING if it is something you are interested in talking to your Dr about. Be informed!


I think I am done with smoking Chantix has been working well for me for the most part. I've had some really interesting dreams, but nothing disturbing. What has really been the nail in the coffin so to speak was my huge back slide last night. At vagina night I smoked probably 7 cigarettes. I was physically ill and vomiting when I got home. Not only that I woke up feeling like I'd been licking the cat box and my throat hurt. I am SO done with cigarettes. Today I have had absolutely zero desire for a cigarette. Even sitting on the patio around other people who were smoking didn't make me have the smallest inkling for a drag. Just YUK.


Well I am off of here to go shoot up the Simponi. I'm not the slightest bit tired so I will probably be awake most the night once the dizziness kicks in. Chat me up on FB if you are with me in the land of insomnia!

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!

Back to life.. back to reality..

Today is the first Monday of many that I am on medical leave.  It started last week, and I took some time to be lazy, have a pity party, feel aimless and useless.  Now it's time to suck it up and make the best of it.  I know I was realistic that the time of no working was coming, but knowing it's coming and landing in it are very different things.  This morning I actually feel pretty good for me.  My skin is screaming, especially the bottoms of my feet which are trying to erupt but haven't yet.  This is my first experience with pustular psoriasis on the soles of my feet so I'm not sure what to expect.  When I've had it on my hands it's been mild and never really erupted.  I was able to cover the pustular spots as they came up with bandages and they would just do their thing.  It was uncomfortable, and occasionally painful if I hit a spot directly, but I was able to avoid direct contact most the time.  With it on my soles I can't avoid it unless I stop walking.  The irony is that for the first time in months I don't feel like I was hit by a truck this morning.  I ache, my feet are swollen, and my hips and back hurt, but I feel functional for me.  I realize this is most likely a side effect of the steroid shot I got last week.  I usually feel better for about 10 days after getting them.  It took longer than usual for it to kick in this time,but I was worse than I've ever been as well.  Of course it's par for the course that a day that I actually feel pretty OK arthritis wise my psoriasis is being difficult. HA such is my life.

I have a new whiteboard on my fridge.  I spent the weekend thinking about what I was able to do and writing things in to fill my days.  The rest of this month is all about organization.  Come the end of June I'll be moving whether it's to a smaller place locally or to Phoenix to be near my family so it's time to sort, toss, and realign all my stuff.  Normally I would do this in the matter of a few days.  Being ex military and a ex military spouse I have done the moving thing many many times.  I have it down to a science, but I realize that this time is different. I can't lift heavy boxes, I can't spend hours sorting, I can't lug heavy bags to the garbage, and I can't move furniture around anymore.  I need to give myself time to do this, and I need to be OK with it.  So what normally takes me a few days I have on the calendar for the whole week.  I'm OK with it if I don't get it done this week because you know what? I have 12 weeks to fill.

I also considered a daily schedule.  I was hoping to be up at 8ish and in bed by midnight.  Taking naps as I needed, but making sure I got those good 8 hours of sleep EVERY night.  Last night was the first night of my plan and insomnia hit hard.  I'm only an hour behind my plan right now, and it's not really etched in stone, but I'm a bit OCD.  It bothers me some that my first day of trying to have structure in my disability is already behind schedule.  I'm sure I'll get over it by lunchtime when I'm eyebrow deep in 20 years of pictures I'm sorting through with the cat helping me.  Maybe daily schedule will start next week.  Maybe I will just need to have a daily process (breakfast, shower/bath, email/blog, morning chore/task, lunch, shopping/afternoon task, dinner/evening plans, bed) rather than picking hours to live by.  I guess part of being on medical leave is you don't have to live by a clock schedule, but it's hard to get used to after years of counting minutes and hours.  Next month I'll be doing National novel writing month so I'll have 30 days to write a 50,000 word novel.  That should keep my mind active to be sure.

I'm off to finish my tea, take my vitamins, have an egg white omelet, and get to mission organization.  Wish me luck!

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!