A spoonful of sugar helps the medicine go down.

Most of us in our youth sang this song and never imagined that the idea that we might need 5 pound bag of sugar to take all our pills one spoon at a time.  Psoriasis and Psoriatic Arthritis have come a long way in the last 5 to 10 years in respect to pharmaceutical treatments.  We still are a long way from knowing what causes either disease or what actually causes us to be triggered to have them, but we are making strides in the right direction to finding therapies that will give relief.  I get asked a lot of questions about treatments available, and on the message board on online communities about Psoriasis and Psoriatic Arthritis medication questions are probably 60% of the inquiries.

As my life is at a bit of a standstill in respect to my medical treatments I thought I might go through the pharmaceutical options available as of today. I will make a list of links at the bottom for resources as to where I found this information so you can research them further.

Prescription Topical Steroids: These range in strength from class 1 (weakest) to class 7 (strongest). You can find a list of currently used steroids in their class levels HERE.  This is usually the first line of pharmaceutical attempts to treat psoriasis.  These should be used sparingly only on the affected areas of skin.  One of the potential and common side effects of long term use of topical steroids is that the skin in the surrounding area will thin.

Tar treatments:  Many of these treatments can be purchased without a prescription, but some especially for the scalp are prescription strength.  Tar is one of the oldest treatments for Psoriasis.  In prescription strength formulas it is often combined with salicylic acid.  These treatments can be quite effective for many, but they can smell bad and stain clothing and skin.  OTC(over the counter) treatments are fairly readily available in most pharmacies and I've seen several on Amazon.

NSAIDs: Non-Steroidal Anti Inflammatory Drugs. These come in both OTC and prescription.  Generally they are advised regularly for Psoriatic Arthritis patients, but current research shows that general inflammation is predominant in all Psoriatic patients so the prescribing of these may become a common thread for Psoriasis patients. OTC versions of these include aspirin, ibuprofen (Advil and Motrin), and naproxen sodium (Aleve).  Some of these also come in prescription strength.  The National Psoriasis Foundation has a current list of commonly used NSAIDs  HERE.  One thing to keep in mind is that many of these medications can be very hard on the stomach, and can cause liver damage if taken in excess.

DMARDs: Disease Modifying Antirheumatic Drugs. These medicines are usually only looked at if the above treatments are failing or not getting the level of improvement that your Dermatologist or Rheumatologist feels is appropriate.  From reading message boards and talking to other Psoriatic patients it seems that many are jumping straight into the DMARD pool.  This may be because it is  being found in studies that early treatment for Psoriatic Arthritis can be imperative in extending quality of life in patients.  This class of medications includes Methotrexate (MTX), Leflunomide (Arava),  Plaquenil (Hydroxychloroquine), Sulfasalazine and, Ciclosporin. These drugs are used to reduce inflammation and damper the immune system so that it does not continue to attack the body as a foreign invader.

TNF Inhibitors: These drugs are the newest in the arsenal of medications doctors are using to fight Psoriasis and Psoriatic Arthritis.  Enbrel  (Etanercept), Humira  (Adalimumab), and Remicade (Infliximab) are currently approved in the United States for both Psoriasis and Psoriatic Arthritis therapies. Stelara  (Ustekinumab) is only approved for Psoriasis, but is in Phase III studies for approval for Psoriatic Arthritis.  Simponi  (Golimumab) is only approved for Psoriatic Arthritis currently.  These medicines are often used in conjunction with DMARDs, but are generally only approved after use of at least 1 DMARD has failed.  This class of medication is used to inhibit the TNF (Tumor Necrosis Factor).  The TNF is believed to be a primary cause of inflammation in many auto immune diseases.  In patients with Psoriasis it has been found that active skin cells are found to have elevated levels of TNF so these medications are used in patients with only Psoriasis to limit those levels.  These medications also act as immune suppressors.

Narcotic Pain Medications:  These are used frequently especially for Psoriatic Arthritis patients.  Many are a combination of a NSAID and a narcotic element (Vicodin and Norco).  Though Narcotic therapies have gotten a lot of negative press in the recent years because of addiction issues, working with your specialist or a pain management specialist to use these TOOLS to reduce your pain to functioning levels is an option.

I know all this is very overwhelming, especially for someone who is newly diagnosed with either or both of these diseases.  I will do some follow up blogs to give more detailed information on the DMARDs and TNF inhibitors, but I wanted to give some basic information to people who have no idea where to start in their research of treatments available.  These are only the pharmaceutical treatments.  I will discuss homeopathic and naturalistic treatments at another time.

Finally I want to say I am in no way a medical professional.  I am offering this information from my personal experience with both Psoriasis and Psoriatic Arthritis and the research I have done over the years in my journey trying to find relief.  Be sure to discuss your treatment options with your specialist.  Always remember you will always be your strongest (and sometimes only) advocate for your health.  Be informed, be aware, and be assertive!

Links to more info

1. National Psoriasis Foundation
2. Web MD
3. American College of Rheumatology
4. Drugs.com

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. 

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.

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.

Pump the brakes!!

I didn't post yesterday because I was going through a lot of mental turmoil over the chat with my Dr's assistant.  So here we go on that now that I have had time to digest and mellow a bit.

The Dr cut me off.  Yep, the Humira ride is at an end.  He wants to put me on something called Simponi.  I hadn't heard about it till a few months ago when he tried to get me on it and my insurance said  "Not gonna happen".  I'm not holding my breath that Blue Cross will change their opinion any time soon.  So back to square one.  UGH!

I had a feeling this was going to happen, but I hoped in some part of me that he'd let me keep going.  I also know that what was going on in my body wasn't a good sign.  It's really hard to have that glimmer of hope, even a minute one like the miraculously psoriasis free toe, and have it taken away.  It's similar to finding your dream job.  It's everything you've ever wanted to do in the field you actually love working in.  You get the call to schedule the phone interview, breeze through it with flying colors.  You get selected for a face to face interview.  You are down to you and one other person.  You pray, do some ritual dance, anything to give you some spiritual/cosmic edge.  They fly you to the place you would be working for a last interview.  More ritualistic gifts to God or whoever might be listening.  Then at the end of it you don't get the job.  TOTAL letdown!  Yes you'll survive, but the build up of the possible was intoxicating and dreamlike.

I had several other feelings last night beyond the grief of the loss of the dream. Anger, worry, fear, irritation, and general pissed offedness.  Looking in my fridge and seeing 2 sealed boxes of Humira also reminded me of the chunk of money not in my account anymore.  OHHH more waves of fury!  Anger at my body, anger at the system, anger that yet again I am let down by the wonders of science.  Fear that without something to help me I am going to be unable to work sooner rather than later.

Now I've had a night to digest and cool off. I'm no worse off than I was a month ago.  I'll deal with the grueling decline, and day to day surprise attacks my body springs on me.  I'll keep looking forward and finding something, anything every day that is good in my life.  There will always be something good to feel blessed about no matter how small it is.  If all else fails I always keep a decent bottle of wine in my pantry.

Information on Simponi.

And so roller coaster ride begins

Tomorrow is my day to take my second Humira shot.  I noticed this morning that my big toe miracle is becoming less miraculous.  There is a patch of psoriasis redeveloping.  My toe was so pretty for a few days there.  The psoriasis in other areas that were improving have started getting worse again as well.  I have started noticing some of those fun side effects as well.  My hair is falling out.  I have been blessed with really thick hair, but it is still disturbing to pull out hand fulls of hair when I washed my hair this morning.  I also feel like I have been eating glass.  My mouth feels raw, similar to having eaten pizza when it's too hot, but all over my gums, tongue, and the flesh inside my mouth.  Luckily it's not ugly cold sores though.  I have a few spots that feel like blisters in my mouth, but I can't see them.  Then there's the insomnia.  Being a long time insomniac it's hard to say if this particular rearing of the ugly head of sleeplessness is a side effect of the meds or just the occasional bout that I have every few months.  It's hard to overlook the timing though.  It also seems like I have to pee a lot.  When I finally do fall asleep I feel like I'm up every hour for a trip to the throne.  I have diabetes in my family so when I first started noticing the frequent urge to pee I went to get my blood sugar tested and it was A OK so it's not likely I've developed the family curse, at least not yet. On top of all that I haven't noticed any improvement in my joint pain.  If anything it's worse.  That in itself isn't unexpected.  All the other immuno suppressors have caused me a flare after I started them.  Remicade made me flare every time I got an infusion the whole 5 years I was on it.  It is just pretty hard to see the light at the end of the tunnel when the great miracle is fading and I am in constant pain.

Oh the fun roller coaster of drug side effects.  I'll be calling the Rheumatologist tomorrow to see if I should take my shot or hold off.  I will be pretty pissed if I can't use the $2500 worth of medicine that is residing in my fridge.  Plus I'll be pretty irritable that I've been abstaining from my Jack Daniels and Diet Coke enjoyment for over a month now.  After not drinking for the better part of 5 years besides on special occasions I've come to enjoy my adult beverages a few times a week, and I kind of miss the whole experience of it.  Even a glass of wine at dinner would nice, but to give this medication a fair shake and not take any chances of causing more damage to my liver I've abstained since I decided to give Humira a try.

OK I think I'm done with my little pity party for now.  Today's positive note is that Wednesdays is vagina night!  I got to spend the evening with my closest girlfriends.  I missed last week thanks to the attack of the file moving episode.  I have some amazing friends.  The core group of 5 of us span 2 decades in age, but share 8+ years of companionship, ups downs, fun, sadness, and have made a commitment to spend time together almost every week.  So happy Vagina night!  If you have a vagina I hope you are blessed with other special vaginas to share your life with.  Nothing compares to good girlfriends except for maybe good girlfriends drinking wine.

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.

It puts the lotion on its' skin or else it gets the hose again...

Happy Saturday!  A little "Silence of the Lambs" humor with my tea and morning smoke.  I'm sitting on my patio with FAB (Fat Ass Bitch aka Thunder the cat) enjoying a "cool" August Texas morning. As I'm telling her to stop chasing the geckos I look down and realize my big toe is somehow different. Still being a bit flared up from yesterday's arthritis bout my flexibility is pretty limited, but my lasik perfected eyes definitely notice something.  I sit in my chair, and lean over to get a closer look.  OH MY GOD! There's NO Psoriasis on THAT toe! 

Now I realize to those of you who don't have Psoriasis and just read this to be amused by my comical musings that this may not seem like such a big deal, but this is HUGE.  I have Psoriasis everywhere and I mean EVERYWHERE.  Of the 4 main recognized forms of Psoriasis I have 3 at any given time and often all at the same time.  This toe a week ago was covered in scales.

 Most of us have had acne at some point in our lives.  Imagine you suddenly woke up one day and you were broke out in the worst way ALL over your face.  I don't mean that monthly geyser you get on your forehead, or the occasional spot because you're stressed or have been eating too much fried food.  I mean everywhere.  You try everything to get rid of the acne.  You do all the over the counter and old wives tales.  Your friends send over the witch hazel, aspirin masks, advise you to drink more water.  You even go to the dermatologist for the $100 cream that clears everyone up.  All this and nothing improves.  You go months, years with the zits of Olympus all over your face.  Your friends are kind enough to look past it, and still offer some nugget of advice they happen to run across on the Internet or see on a late night commercial.  Even with all their support and good intentioned advice you can still see the pity in their faces.  You still are mortified to look at your own face even with a level of acceptance that it isn't your fault and there really isn't a lot you can do about it.  Now one day your doctor calls and announces the newest greatest medical breakthrough of all time.  He tells you all the great and wonderful things about it.  It will clear up your face, it will keep you from getting another volcanous breakout, and you only have to do it once a week. Oh boy this sounds awesome!  I gotta have this!  I may have some scarring to cover up, but I might just get my beautiful face back!  So you agree that this is the thing you must have.  Now comes the bad news.  Firstly, you will have to do this medication for the rest of your life or till your body decides it just doesn't like it anymore.  Oh and then there's the cost.  It's a mere $1000 a treatment and your insurance only covers 80%. Yes that's $1000/wk.  Then come the potential side effects.  It is really hard on your liver, your risk of infection is increased a lot, it can cause blood cancers with prolonged use.  That's just a few on the shopping list of horrors.  You think about it long and hard and decide it's worth the risk.  You invest in the first month of treatment and hope for something, anything to improve.  Then about a week into your treatment you notice that the whole section from the edge of your eyebrow to your ear is completely clear of zits.  Most people won't notice the difference because there is so much eruptive pus on the rest of your face, but YOU notice it, and it's HUGE.

This is kind of  how it feels to realize I have no psoriasis on my big toe.  I started Humira a little over a week ago and it's the first real indication it is causing an impact on my condition.  This isn't my first ride on the Biological roller coaster.  I have tried Enbrel and it was too devastating on my immune system so I would get pneumonia every time I heard someone sneeze. Even if it was over the phone.  I had a successful run with Remicade for about 5 years.  It stopped working on my joints even at the max dose and frequency so I decided it wasn't worth the risks.  I've been biological free for a little over a year and the Dr thought we should try Humira.  I haven't noticed any bad side effects yet so that's positive.  I do miss my Jack and Diet Coke, but if it will help I'll sacrifice that until we find out how it's messing with my liver.  This is my last option for biologicals.  There is one more on the market, but it's still pretty new and my insurance won't cover it yet.  Essentially it's my last hope for a while. 

Here's to hope inspired by my big toe!  What a beautiful big toe it is!

Information on Enbrel 
Information on Remicade

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.