You are what you eat

Last week I wrote a blog about the pharmaceutical options on the market right now for Psoriasis and Psoriatic Arthritis.  Today I want to discuss some of the diet based treatments that people are finding some success with.

One thing to remember both with both pharmaceutical and natural/holistic treatments is there really is no one size fits all approach to Psoriasis or Psoriatic Arthritis.  It can take a lot of trial and error to find what will work for you and your lifestyle.  Also remember you need to discuss with your medical professionals if you want to do drastic changes or diet programs to help control your psoriasis and/or psoriatic arthritis.

Many people find they do have food triggers.  It may be a full out allergy or a sensitivity that is causing your psoriasis especially to be triggered.

There are a few "diets" that are popular in the psoriasis community, but the one I hear the most about is Dr. Pagano's diet.  The Pagano Organization has information about the program and Dr. Pagano's books.  The basis of this approach is that the psoriasis is triggered through imbalance in the intestinal tract (Leaky Gut Syndrome).  It focuses on diet to equalize the intestinal tract and improve elimination of toxins.

Another popular approach is to do an elimination diet.  This is more focused on potential food allergies or sensitivities.  Generally it is suggested that you eliminate processed foods and foods that are common allergies such as dairy, gluten, yeast, and sugar.  It is also suggested that you eliminate foods that are most common in your diet.  If you drink orange juice ever morning for breakfast, remove citrus from your diet for several weeks to see if you have improvement.  A few web sites I have found useful in both following an elimination diet and still enjoying my food are The Whole Life Nutrition Kitchen and 100 Days of Real Food.  Many people find that jump starting this elimination process by getting an allergy test done is helpful.  If you decide to start the elimination process with allergy testing be sure to let your Allergist/Immunologist that you are getting the test done because you have Psoriasis/Psoriatic Arthritis and you are interested in isolating foods that are triggering issues for you.  This will allow your testing specialist to be sure that they are including as wide a range of food allergens as possible.

One last route that has grown in popularity in the diet department is the juice fast.  If you have watched the movie "Fat, Sick, and Nearly Dead" you will be familiar with this approach.  If you haven't click on the title and it will take you to Hulu to watch it for free.  This program is about resetting your immue system through flushing it out while consuming fresh juices.  It allows you to maximize vitamin and mineral intake and give your system a break from breaking down food.  The documentary is about the best way to get information about the program.  It's very informational and entertaining.  There is also a web site that is a companion to the movie that helps with following the plan called Reboot with Joe.  Again you need to be sure you discuss this program with your Doctors so that you are being tracked and having your vitals and blood work checked regularly to make sure you are doing this in a healthy way.

Some food components that are not actually a full diet program are to limit/eliminate nightshades.  These vegetables are believed to cause flares in many people with both Psoriasis and Psoriatic Arthritis.  WHFoods.com has a fairly extensive list of nightshades HERE, and LiveStrong.com discusses issues with nightshades and Psoriasis specifically HERE.  Many people also find eating anti inflammatory foods helpful.  DrWeil.com has an interactive food pyramid of anti inflammatory foods to give you a place to start.  I realize that some of the foods on the nightshades and anti inflammatory food chart are contradictory, and can make the process confusing, but this is an area that trial and error really comes into play.

One last thing to note is that drinking alcohol is generally considered to be bad for Psoriasis and Psoriatic Arthritis.  Not only is it advised to stop drinking alcohol when you are taking many of the medications used to treat both diseases because they are very hard on the liver, but many people find it is a trigger for them.

Finally let me say that not everyone will find that adjustments in their diet will improve their Psoriasis or Psoriatic Arthritis.  I fall into that category.  I have tried all the approaches talked about above and had no improvement in my diseases.  That being said I do believe that living our healthiest life possible is good for us.  Even if I don't avoid particular foods I do limit processed foods and eat whole foods for the majority of my meals.  I also try to eat a very well rounded diet with minimal sugars and red meat and a lot of vegetables and fruit.

Finding your food triggers can take months of trial and error, but you can do it at your own pace.  It doesn't have to be everything at once if you are not comfortable with that level of radical change.  Pick a few foods and start there.  Always be sure to keep your doctors aware of your process so they can support you by monitoring your health and possibly referring you to a Nutritionist to help you with the process.  Don't view this as losing all your favorite food choices.  It's just changing some of them and finding new favorites that don't disagree with your body.

I hope this helps you all find some places to start your search for diet changes that might help your life be better.

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.

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.

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!

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!

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.

Back to reality.

So now I'm back to DFW, and back to work today.  Oh JOY!  My joints felt SO great while I was in Phoenix.  Now they are quickly returning to pre vacation swelling and pain.  It was nice while it lasted.

Today I thought I would talk about road trips.  I love my time on the road.  It's my place that I can go and go and go, and my arthritis might slow me down, but it doesn't stop me.  I'm not a big planner when it comes to these trips beyond a fuzzy time frame for leaving point a.  I've found 4 routes for DFW to Phoenix, and I don't decide till I'm on the road what way I'll go.

Here are my "rules" for road trips.

1. Eat well!  I make healthy finger foods for eating while I drive for the trip to Phoenix.  On my way there I'm in a hurry to get there so stops are limited to gas and restroom breaks.  No time to dawdle.  I stick to fruits, vegetables, both fresh and dried, lunch meat rolls (lunch meat, cheese, veggies rolled up like a burrito), salads with lots of cheese and nuts for protein.  I keep some chocolate for those moments when I'm feeling a little run down, and lots and lots of water and diet coke.  When you have an immuno issue you don't want to allow your body to go wonky because you aren't feeding it.  Make it a priority either with food you bring or with the stops you make.

2.Be safe.  I travel by myself a lot.  In fact the last 4 trips I've taken have been solo.  Previous trip have been with my daughters, so even more reason to be aware and safe.  Always stop in well lit places with people around.  Be aware on what is around you, who is noticing you, and who/what looks out of place.  If possible get gas on your credit card or cash, and pay inside.  Protect your credit/money/identity because you have to come off vacation some time.  You don't want to get half way to your destination and find out Olga in the Ukraine has drained your account buying cotton candy off the Internet.

3. Have fun.  I've made this trip so many times that I find new things to entertain myself.  I'm a huge car karaoke singer.  I'm usually nearly horse by the time I get to my destination.  I also find myself seeing how many rocks and clouds look like peni (or is it penises?)  There are a LOT of penis rocks in the East Texas desert.

4. Hydrate and moisturize.  This goes along with the eating healthy and the one I always have trouble keeping up with.  My diet coke is my addiction.  Water is often an afterthought, but it is very important to stay hydrated.  Moisturizing, especially when you have skin conditions like psoriasis, is equally important.  Another forgettable thing while I'm belting out Kelly Clarkson, but if I don't my skin is a cracked, bleeding mess.  The skin is the largest organ of the body, and 20+ hours in the ac of the car makes that organ scream for relief.

There you have my tips for a enjoyable road trip with chronic illness.  The road is a great because it's so adaptable.  Bring a friend who sings just as badly as you do (not possible in my case) and have a blast!

Feels SO Good.

I know I've been absent for about a week.  I decided to take a road trip to Phoenix.  I am SO glad I did.  Firstly I am getting to visit with my family which I miss dearly living 1000 miles away from them.  Secondly for a joint vacation.  No I don't mean a weed for my friends who like to turn everything into double innuendo.  I mean my joint pain.  Yes I still have pain, but it's literally like turning back the clock 5 years.   I was even tempted to find a place to go dancing just because I think I actually could get away with it.  It never ceases to amaze me the difference the desert climate makes for me.  Even with it being "monsoon" season I feel GREAT in comparison to my normal comfort level.

I really don't think Simponi is doing much for me yet, but it could have something to do with it too.  I will have to wait till I venture back east to find out for sure.  The fact that the pain gradually decreases as I get closer and closer to El Paso on my trip leads me to believe it's not Simponi, but climatic change that is the improvement.  My skin is worse if anything so it's definitely not doing anything for my psoriasis.  I am not having any really bad side effects still either so I will probably give it till December to show some improvement before totally discounting it.

Simponi really isn't the reason I'm blogging today so enough of that.  I am having a great vacation spending time with my family and otherwise doing pretty much nothing.  I feel rested for the first time in months.  Again I say, it's AMAZING!  My mid term goal in life is to move here, hopefully before my arthritis advances to the point that the climate won't make a difference.  The reduction in swelling makes a big difference in the degrading of the joints so getting here for my health is looking like it may become a shorter term goal than I originally planned.  I know my family would be thrilled to have me closer as I am the last one not to migrate to the desert in my immediate family (my kids not included).  Even when I was younger and living at home I don't remember us being as close as we are today as a family.  I miss them being physically in my life on a regular basis.

So here's to the desert and all it's charms.  Even with 100+ temps it's where I want to be very soon.  The only thing I could do with out is the ginormous spider that came out to say hi.  So to close I'll leave you with him.  I'm pretty sure the only thing that will kill him is fire.. Lots and lots of fire....

PS I miss you vaginas!!  I'll see you next week!

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.

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.