Wednesday, October 31, 2012

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!

Monday, October 29, 2012

Yeah, I'm plagiarizing myself!

On Inspire today someone asked for people to post their journeys into P and PsA.  I did it and realized that I had never actually written it all out.  SO you all get to benefit from my novel warm up posting.  Here ya go, the journey into Hell...

I was diagnosed with Psoriasis in 1998 after having a bad reaction to a Anthrax Vaccine. Soon after I started experiencing severe bursitis in both my hips. In hindsight this was probably the beginning of PsA. Swelling of the bursa in your large joints is a common start to the damage of the actual joints that happens in PsA. I was discharged from the Army because the swelling and pain in my hips from the bursitis had gotten to the point I couldn't do "soldiering" such as qualifying with my weapon in the prone position, run the 2 miles for my PT test, pass the sit up portion of my PT test because my hip flexors were already starting to be compromised, among others. When I had my VA appointment the Army decided that my P was service connected. I moved forward with life, found a job in my military trained career field, and got the typical creams, steroids and muck that was available for p at the time. Around 2000 I started having many more symptoms that again in hindsight were probably PsA. Pain deep in my hip joints, stiffness of my hands, lower back pain for no apparent reason, fatigue. I went to several Drs and was generally referred to a Orthopedic Surgeon. Of course there was no sign of actual arthritis and was again denoted as Bursitis and given a steroid shot to my hip since it was the most usual place for regular pain and sent on my way. In 2004 I was having a particularly bad P flare and was sent to see a dermatologist. He said it was time to discuss DMARDS and Biologicals, and suspected because of my other symptoms I was very likely actively into PsA as well. He prescribed me Methotrexate and it was like magic! My skin cleared up alot, my joint pain was SO much better, but with that magic came some side effects which were not so pleasant. I was taking the pill form and would be so nauseated for 24 hours after taking my MTX that I would actually have a migraine induced from it. I was also very fatigued, more so than usual. The Dermatologist switched me over to the shot form of MTX and suggested I take it at night before going to bed and have some toast and milk before going to bed as well on MTX nights. This seemed to take care of the nausea. The fatigue was something I decided was a necessary evil to have my beautiful skin back and finally have some joint relief. The magic of course was short lived. About 6 months before the joints started really screaming again. The Dermatologist suggested I go to see a Rheumatologist. The Dermatologist had noted in my records that he suspected that I had PsA already, but I needed a Rheumatologist to make it official. Of course I got one of those Doctors who won't make a call officially until they have hard proof of it. She agreed I did have an immuno based arthritis, and I did have psoriasis, but she wouldn't designate it as Psoriatic Arthritis in my records. Just Psoriasis with presentation of multiple joint Arthritis. This was all fine for me at the moment as long as I was getting the treatment I needed which was biologicals and at this point pain meds. She put me on Enbrel and gave me a script for Vicodin and sent me on my way with check ins every quarter to check blood work and see how Enbrel was helping. Again it was MAGIC! My skin was totally clear in a matter of weeks. I was back to working 60+ hours a week, traveling for work, going out with friends. I was in heaven. Then slam on the breaks! I returned from a few days in Houston and had a fever of 104. I went from fine to pneumonia in less than 24 hours. I have been fortunate with my medical professionals that they are pretty open to inter discussion about my issues so when I went to my PCP for the pneumonia she immediately called my Rheumatologist. The decision was made to stop Enbrel and once I was recovered from the pneumonia to come in to see what to do next. It took me over 2 weeks to actually be functional again. Not only do biologicals make you more susceptible to infection and illness,but it also makes recovery a longer process. I was then started on Remicade with a low dose of MTX. My body has a long history of becoming immune to meds quickly and the Rheumatologist decided we'd use MTX to slow down my bodies natural defense of becoming immune to everything. Remicade wasn't the magic that MTX and Enbrel were in the beginning. I did feel less flared most of the time, but it took about 2 months to really kick in. Slowly but surely my skin cleared, and my joint swelling lessened. I was back to wearing shorts and tank tops. I even wore a swimsuit again! I was dancing, traveling to India for work. Life was looking pretty good. I did eventually get to the point I couldn't tolerate MTX so about year 2 of Remicade I stopped MTX. My body started doing its thing pretty quickly and my Remicade infusions were becoming less and less effective. My Rheumatologist started upping my dosage and frequency, and went back to vicodin for pain as needed. By year 3 I was at max frequency and max dosage of Remicade. I was also needing vicodin at night to be able to sleep because I was in enough pain that I couldn't find a comfortable position to sleep in. Many nights I found the only position that was comfortable even with vicodin was in my recliner. I had my friend move my recliner into my bedroom so at least I could sleep in my room and not be taking over the common living areas of my home with my disease. I also started noticing that my minimal dosage of vicodin wasn't working and approached my dr about changing medicines. I have been using pain meds for bursitis for years and have always stayed on the lowest dose by changing chemicals every few years. The Rheumatologist had a strict policy of no triple script meds. Meaning no narcotics that required hand written scripts in triplicate. I understood her issues with triple script narcotics, but I didn't agree with it so I decided to look for a new Rheumatologist. In the midst of this I had had filed a VA claim for my PsA. Since I was already rated as service connected for P it would be common sense that my PsA was a continuation of that. Right? Uh no, since my Rheumatologist had not put my condition as PsA, but Psoriasis with immuno related arthritis the VA decided that I had Osteoarthritis in my shoulder since that was the only place I had listed on my list of most affected joints that had actual arthritic damage at that point. This is the journey that has lead me to my current Rheum. He is awesome. He kept me on Remicade for about another year, tried several other DMARDS which had never even been discussed with me before, switched up my pain meds for 6 months and then switched me back to vicodin once my body had forgotten about it just as I predicted it would, explored naturistic and homeopathic options with me, suggested dietary supplements for me to try, and has been the best dr I have ever been to. It was finally decided that Remicade wasn't helping my joints and it was time to consider other options. My skin was still pretty clear but my joints were not doing well. He supported my decision to try a natural route for a while as I considered my options and hoped for some other meds to come on the market. I was biological and DMARD free for a little over a year. Again hindsight is a bitch and it was probably a mistake. In that year my P and PsA became very aggressive. The decision eventually made to try Humira. I had a glimmer of hope because my big toe, which was covered with P and cracking, was almost completely clear at the end of week 1. Then came the bad. Right before I was to take my 2nd shot I started losing my hair, I developed sores in my mouth so it felt like I was gargling glass, and I started getting hives. Yep you guessed it, stop the Humira. Now we are up to date. I am currently on Simponi. I have been taking it for about 3 months and it is doing zero, zip, nada. Since starting it I have developed Pustular Psoriasis on my feet, my P has been in constant flare, and my joints are no worse or no better. I have a bottle full of Arava I can start taking, and when I spoke to the Dr's office this morning they said my Hepatitis screening was clear so I could start taking it, BUT it was pointed out that I have been gasping. Apparently I have been doing it for a few months. The boyfriend noticed it was pretty bad this weekend and asked how long I had been having "shortness of breath". He said he had noticed it occasionally for a few months, but Friday it had started to get very noticeable and worrying. He wanted to take me to the ER. I of course said "I just need a deep breath every once in awhile! I'm fine! I used to be an athlete, I know what shortness of breath is! This isn't shortness of breath! You're stressing me out (deep gasping breath)" Ok called the Dr this morning and have an appointment on Thursday to see him and get poked prodded x rayed and scanned. 

Sunday, October 28, 2012

I just need to breathe

I am not sure if I have a new side effect or something else wrong with me, I mean something NEW wrong with me.  I've noticed the last 2-3 months that I occasionally feel like I need to take a deep breath.  It wasn't all the time or even frequent necessarily.  It was happening maybe 2-3 times a day I'd feel like I needed an extra deep breath.  Friday it started getting worse.  It was bad enough that the boyfriend has become concerned.  I did some research, and this could be a side effect from 2 of the meds I'm on, the Simponi and the vicodin.  I also stumbled across a article on the Internet that talked about psoriatic arthritis being shown to cause inflammation in organs including the lungs.  I really hope I have a reaction to the Simponi or vicodin. I'll be calling the Dr tomorrow to see if he can get me in this week.  Just so my friends and family don't panic when they read this, I am not sitting here gasping for air suffering.  It is still fairly sporadic  but it is becoming a much more frequent occurrence and something I need to get checked out.  It really sucks I have gone to the effort to quit smoking and NOW I can't breathe.  What is funny is that I actually am breathing better most the time.  I'm not always congested and coughing up crap. So I'll be calling Dr. Lavery tomorrow.  I'm still waiting to hear about my Hepatitis screening from over a week ago so I can get those results then too.

So there you have it.  Possibly another side effect.  Simponi really hasn't done a damn thing for me so being told I need to stop it wouldn't really bother me.  It's not costing me anything, but it's a poison in my body that has a lot of potential to be bad for me.  It isn't like the Humira that I was actually seeing improvement with my psoriasis almost immediately.  I'm 3 and a half months into the Simponi project, and nothing.  My skin is worse than before, I've developed pustular psoriasis on my feet, and my joints hurt ALL the time (not better or worse than before).  If I'm told not to continue it's not a loss of a dream or even the shimmer of hope.

Thursday, October 25, 2012

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.

Tuesday, October 23, 2012

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 :)

Monday, October 22, 2012


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.

Thursday, October 18, 2012

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!

Tuesday, October 16, 2012

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!

Monday, October 15, 2012

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!

Thursday, October 11, 2012

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!

Wednesday, October 10, 2012

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.

Tuesday, October 9, 2012

Ohh the smell of tiger balm in the morning.

Here I am, yet another FMLA day.  I go to my Dr tomorrow and I have the medical leave form in my purse for him to fill out.  I'm not totally ready to admit defeat so I think I will ask him to put 90 days on my form in hopes that Simponi will kick in.  If that 90 days doesn't show improvement I will concede to my fate and start the SS disability process.  I am so fortunate my  employer offers disability options that allow for a cushion between working and starting SS disability.  I don't know what I would do without it.

Now I'm sitting in bed, tiger balm coating my lower back, knees and feet.  If I put my head under the covers for long it's like a Vick's vapor cloud taking over.  At least my sinuses will be nice and clear.

Hope everyone has a good day!  Since many of my readers are chronic pain people too, here's to minimal pain for at least part of your day!

Sunday, October 7, 2012

Ch Ch Ch Changes....

Here we are at Sunday.  Another weekend gone by in the blink of an eye.  I've spent a lot of time thinking this weekend though of the fact that going on disability is likely to becoming a reality soon rather than a someday eventuality.  For 2 weeks now my arthritis has been out of control, my psoriasis is worse than ever (including a really bad flare on the bottoms of my feet which I've NEVER had before), and besides being sick for a week from TDAP my energy level is in the pits.  I only worked about half time last week, and I feel SO guilty on those days even though I am not getting paid for the time I'm not there with FMLA.  Until my arthritis really started effecting my energy level and my pain was becoming limiting about 5 years ago I was working 60+ hours a week.  Previous to that job I was working multiple jobs both paying and volunteer so the idea of working 20 hours a week and being exhausted is just down right embarrassing.

So I am working on coming to terms with that.  I spent a lot of time talking with my oldest daughter about it. She is the muse I used to be when I was younger.  Full of realistic ideas and optimism.  She helped me see that this will be a better life for me.  I am really cheap so the monetary change will take some adjustment, but won't be devastating.  If anything it will be that challenge that may keep me sane.  I quit smoking mostly because it is my largest discretionary spending I have.  I really don't drink, I don't do illegal drugs, I don't shop much without a lot of lists, planning, and thinking.  I smoke my cigarettes.  I like my cigarettes.  Cigarettes are $200+ of my budget that I can get rid of.  Today is my first day cigarette free.  With the help of Chantix I am doing pretty good.  Yes, I am thinking about them occasionally, but I haven't gone searching for butts or done an emergency run to the smoke shop for a cigar to get me through without buying a full pack.  I have quit using Chantix before and it worked awesome.  After a week of not smoking, even being around people that smoke didn't bother me.  I didn't miss them.  I just have to accept that I am always going to be a smoker, and in order to be smoke free I can not touch cigarettes EVER.

So hopefully this week will be OK.  I see Dr Lavery on Wednesday, and we'll have the disability talk.  Maybe I can just limit it till the end of the year for at first and hope that the Simponi will kick in at some point between now and then.

Wish me luck on the quitting smoking!

Thursday, October 4, 2012

Rub a dub dub, I'm blogging from the tub.

Yes, today's blog is brought to you live from my bathtub   Today was the second day I have had to come home because of arthritis.  My knees, feet, hands and back are the culprits today.  My hips hurt as well, but it feels more like that is bursa related than arthritis related.  It's sad I've had these afflictions long enough to actually be able to differentiate types of pain.  I've been passing a lot of time this afternoon reading some older posts on and a constant theme, especially with the Psoriasis group, is the food vs medicine debate.  Some posts are nearly fanatical about it.

I thought I would give some of my personal experience in that area.  Having had psoriasis as long as I have, I have probably tried just about every OTC, prescription, and alternative method I've ever read.  I have done many of them for PA as well, but it's still in the trial and error phase even with almost a decade of affliction.

I'll start with some background.  I was diagnosed with psoriasis in 1998 after a bad reaction to taking the Anthrax vaccine while in the Army caused my immune system to go into hyper drive. At that time there was still very little known about psoriasis to include causes and treatments.  The general route of care was topical agents such as lotions and steroid creams.  Occasionally for a particularly bad flare up a steroid shot would be administered.  Tar was a big seller to the psoriasis crowd and it did give many people, myself included, some relief.  At the time I was diagnosed I had a pretty healthy diet and I exercised more than regularly.  I did smoke a lot and drink alcohol regularly.

So there you have the beginning of the journey which I will be on for the rest of my life.  I couldn't give you names of all the prescription topical treatments I have tried.  If it's out there and legal I have been prescribed it and used it.  I have been on every biological available for Psoriatic Arthritis.  Enbrel worked awesome on my psoriasis (didn't have arthritis diagnosed yet at that time), but it depleted my immune system so much that I went from never getting sick to pneumonia that took me out for 2 weeks and getting every cold and viral malady that passed within 100 feet of me.  Methotrexate worked well on it's own and in combination with Remicade, but started making me very sick so I quit taking it.  I had a really good 5 year run on Remicade and it stopped working on my joints so I decided that the benefits no longer outweighed the risks.  I was biological free for a little over a year and sustaining some level of comfort some of the time with Vicodin.  Then my arthritis kicked into high gear.  I tried a run with sulfasalazine to avoid going onto Biologicals again, but it did nothing.  Tried methotrexate again, but I was living next to the porcelain god for at least 24 hours after taking my shot from that.  My skin was already thrashed and cracking, but the arthritis attack was what sent me back to biologicals.  Humira started working on my skin almost immediately, but about a week into it I started losing hair by the handful,  getting mouth sores so severe it felt like I had been eating glass, developed hives and some other rather nasty side effects.  My Dr took me off that and now I am on the last hope which is Simponi.  My side effects have been generally mild, nausea, dizziness, but I have also not had any improvement of my psoriasis or arthritis.  The psoriasis is actually worse than when I started.  I have resorted to using a topical steroid to get minimal relief from the cracking and bleeding, but I itch like I've been rolling in poison ivy.  I also got a TDAP vaccine which took me out for most of a week from work because of getting almost all of the potential "mild" side effects.  Mild my ass!  I think that pretty much covers the pharmaceutical side of things.

In this whole process I have tried the holistic treatments with mixed results.  Dead sea salt, occlusion with natural nut butters and oils, high doses of vitamin and mineral supplements, and food exclusion.  I am very fortunate to have a forward thinking Rheumatologist who is willing to work with the treatments you want to pursue.  He is knowledgeable of both pharmaceutical and holistic treatments out there and even has some alternative treatments he'll let people like me who are at the last option try.

As for diet I've tried most of those too.  I've done paleo, juice fast, all whole foods, all raw foods, exclusion, and many more.  For me I don't seem to have food triggers.  I do feel better when I eat a well rounded diet with minimal processed foods.  I try to stick with organics, local meats, produce, dairy and honey.  I love food so for me turning what is available to me into something fantastic is an adventure.  It doesn't however improve my psoriasis or my psoriatic arthritis.

To the people out there who swear by diet controlled psoriasis, I am so glad that you have found relief.  Perhaps though the reality is that your psoriasis is just like the rest of us in that it is immune related and you are ALLERGIC to foods.  Rather than hives or stomach upset your immune system responds with psoriasis. Each of us with psoriasis and psoriatic arthritis have some reason that our immune system has begun to attack us.  Not all of us are food.  That some of us are food issues is really a blessing.

At the end of the day my take on drugs vs food is that both are vitally essential for us to live the best life we can.  You have to feed your body healthy food to be as healthy as you can be.  For some, like me, being healthy as we can be still means arthritis flares (and arthritis all the time) and psoriasis everywhere.

Wednesday, October 3, 2012

Inspire me!

So I found another Psoriasis and PA group that I have been enjoying reading the last few days. has many health/disease related boards and a place I'd recommend to check out.

Even reading the posts on this web site it occurred to me just how much misinformation and lack of information is out there.  Granted this being an autoimmune disorder it can be extremely hard to pin down a diagnosis let alone find a workable treatment, but some things I have read just today have been total malarkey.  It saddens me that people will spout uninformed and uneducated things as the end all fact.  That being said I understand that each body is different so each person has their own chemistry to find the antidote or measure of relief for.  On the other side of that coin is the amazing community and support that is available.  So many people who are sympathetic to each other.  I saw one poster who had been diagnosed with PA 30+ years ago giving tips and advice to someone who had recently been diagnosed. That is truly inspirational if you ask me.

I don't really have a topic to discuss tonight, but I did want to share the web site.  Even if you have a illness that is not PA or psoriasis check it out.  There is a plethora of afflictions there.  Also Hello to the 30 or so readers who came over to check me out.  I was a bit shocked to see my stats today and find they all came from there.