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.

Raindrops on Saturday

It's a rainy Saturday in the DFW.  When I started feeling the rain pain yesterday morning I looked at the radar and this front is a doozey.  It went from the edge of the DFW west to almost Tucson, AZ.  For those that aren't up on their geography of the US it's fricken HUGE!

Since I'm TV'd out after 4 days of pretty much living on my couch with the fall out of the TDAP vaccine I decided I would so some surfing on the net. I noticed this morning that my glands were swollen and I had a mild sore throat.  Not enough to panic, but I realized that about a week into my shot last month I felt the same.  So off to research Simponi some more.  Apparently it is a typical, but not common side effect (whatever that means).  I found a message board I hadn't found before that covers many chronic diseases, and has a PA specific area.  I got to reading it, and the stories about people with Psoriatic Arthritis and Psoriasis hit way too close to home.  The people who feel exactly the way I do about running out of options, frustration, fear, on their last hope with current medications to be able to work and live functioning lives is just heart breaking.

One of the saddest things is in order to properly focus on your illness you really need to not be employed.  Reduce stress, prepare/eat whole natural foods, intensive skin care, and rest along with any number of other benefiting factors are what you need to do to reduce your body's attack on itself.  In order to financially support those things AND maintain medical and pharmaceutical care you need to have a job.  Knowing that your options are running out in a time that you can actually imagine is terrifying.  It is all a vicious circle.

As to today's video selections they really have nothing to do with anything besides that Rhianna was going through my head when I was listening to the rain on the patio.  These songs actually remind me of the 2 Nicole's so here they are for them.  They each know which one is for which.  Love and miss you both!!  Wish you were here to hold my umbrella puddin butt!

When you're sliding into first and you're feeling something burst....

I got a TDAP vaccine Monday.  Boy am I regretting it at the moment.  Of the posted potential "minor" side effects I have all but 1 which is the rash.  Not like my skin needs ANY more issues.  Because of this I decided to talk about vaccines tonight.

When on immuno suppressors, such as the Simponi I am on, you have to be VERY careful about vaccines.  Your immune system is compromised so the side effects can be much worse than you would normally experience.  I am going through that at this moment.  NOT fun.  You also should take absolutely no live vaccines.  I don't know the full list of these, but I do know one of the most common being the flu vaccine which is inhaled.  I have always had a bad time with any flu vaccine so it is one I always avoid as a rule.

Another thing with vaccines to consider even if you are healthy, but have a family history of immuno disorders, is that they can actually trigger the immuno reaction.  This is also my situation, or at least it is suspected to be.  I was a healthy, active person before taking the Anthrax vaccine when I was in the army.  I had a very strong reaction almost immediately after taking it, but 2 weeks or so after my 2nd round is when I developed psoriasis.

I do believe personally that vaccines have benefited the human race.  Many diseases that were killers in the not so distant past are no longer the universal threat they were.  I also believe that we have managed to systematically ruin our immune systems by trying to manipulate them.  Not only with vaccines, but with the barrage of anti-germ products we are inundated with.  I don't know what the answer is except to be informed.  Just like any medical decision weigh the goods and bads.  I decided the benefits outweighed the negatives this time and took the TDAP.  Yes I am pretty miserable, but whooping cough would kill me with my compromised immune system.  Hopefully the nausea, vomiting, diarriah, fever and pain will pass soon.  In the meantime I am catching up on all the chic flicks on netflix.