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!

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.

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 Inspire.com 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.