The Journey

Just taking up a little more www real estate to share my journey with people. Thanks so much for stopping by.

Thursday, August 7, 2014

Anklosying Spondylitis and Other Fun Scientic Words

I'm a singer and musician so it's only appropriate that I start this blog with a quote from a song.  I use song quotes frequently in my writing.  They are fitting and it is through music that we find the words in a particular order and rhythm that otherwise would not occur.  We can't find the right words often and yet through music it seems possible.

I was introduced to Brandi Carlile's song, "The Story", several years ago on Grey's Anatomy when Sara Ramirez's character sang it.  I want to focus on the first six lines of the song.  By the way, the entire song can be found HERE on youtube (with spanish subtitles, even!)

All of these lines across my face
Tell you the story of who I am
So many stories of where I've been
And how I got to where I am
But these stories don't mean anything
When you've got no one to tell them to

A friend from my high school days recently told me, " do yourself no favors keeping this to yourself.  It only causes more stress, which you don't need".  Thanks Joe!  I really needed that.

In this blog I'll share scientific data, medical terms, research analysis and personal stories...and sometimes I'll be happy and filled with hope and other times I will be in the utter pits of despair because THAT'S what life is like when you live with a chronic disease.  I believe its important to scream and yell at God.  No amount of disrespect is meant, of course, but I believe God wants to hear it from our mouths.  He knows our minds and hearts but as a parent we just want to actually hear our children say it - and so I do.  Through this blog I'm sure there will be days that I'm yelling and feeling that maybe today is the day I just need to give in and take that last step off the cliff.  But one thing is NOT going to cease - my faith.  It is not possible for me to give that up.

I have Psoriatic Arthritis. Is is a type of Rheumatoid Arthritis that appears in about 30% of people who suffer from psoriasis.  There are five types of this disease and many patients will actually cross over and have a mix of them. I have arthritis mutilans, sometimes called 'chronic absorptive' arthritis. It affects less than 5% of patients and is severe, deforming and destructive.  It can lead (and has in several areas on me) to severe joint damage and loss.  I also experience sponydlitis which is an inflammation along the spinal column from the neck down to the tail bone.

Dr Mary Cronin of the Froedert Medical College in Milwaukee, Wisconsin first diagnosed me.  To this day I'm not convinced bases solely on the fact that I have psoriasis in one spot on my entire body and it is about the size of a penny.  She told me that it really isn't the name that I need to focus on - it is a type of rheumatoid arthritis and I need to focus on slowing the joint damage.  She was right.  RA and PSA both receive the same treatment and therapies so the name shouldn't matter.

During the course of several years I have lost bone and tendon in my right foot.  For you biology buffs, I have completely lost the phalanges mediae in toes II, III , IV and V.  I have lost the phalanges proimales in II and III.  Toe V (the little toe) and I are in a constant state of severe inflammation and it's tough to know right now what damage has been done because I haven't had an x-ray in two years.   The ends of the II and II metatarsalia have been worn down so that they are now pointy, instead of rounded.  Prognosis? That's another blog entry...

Besides pain, swelling and stiffness (which is debilitating in and of itself), I also experience dactylitis which causes my fingers and toes to basically take on the appearance of sausages.  Tendinitis and plantar fasciitis is a result of inflammation of the Achilles tendon and make walking very painful especially on the bottoms of the feet.

Perhaps the most distressing characteristic is the fatique.  Regardless of the amount of rest one can get, the fatigue alone is debilitating.  Ask most RA patients and they will tell you that the number one thing they wish they could overcome was the fatigue.  It is the first reason many of us are unable to work a regular job.  There are days that I am not able to get out of bed until close to noon or even as late as 2:00 p.m. only to return to bed around 5:00.  No amount of exercise or nutrition seems to combat this.

This disease is an inflammatory disease so the first line of defense if  your basis NSAID such as ibuprofen and naproxen.  I have tried most lines of NSAIDs and am out of options at this point.  They are ineffective.

The next level is a disease-modifying antirhemuatic drugs (DMARDs).  These medications not only focus on reducing pain and inflammation but they focus on limiting the amount of joint damage.  Methotrexate is the common one and I currently inject myself once a week.  Wednesdays' are my days and I wait till the evening so I can sleep through the side effects.  It's tough to function for the first 24 hours after taking it and I spend my time sleeping it off, if possible.  It is a common chemotherapy medication and comes with a dose of nausea, occasional vomiting, and dizzyness.  It is also an immunosuppressant medication so my liver and kidney functions are tested and monitored closely.  I am also at increased risk of serious infections.

And finally there are the newer medications, the biological response modifiers or biologics.  They target specific parts of the immune system, specifically the tumor necrosis factor (TNF) which is the part of our immune system that causes inflammation.  I've been on three levels of these so far.  The first one worked for a few years and in fact, it was incredible.  I had my life back, I felt great.  Then it stopped working.

As of today I am not well, to be honest.  I need help around the house with chores and things like getting in and out of the bathtub.  I use a walker in the house to help prevent falls.  My right hand is very swollen and function is limited.  In fact, I've had to revise the way I type on the keyboard and take breaks every ten minutes.

The feet and toes are the most bothersome and cause me the most issue because, well, I like to walk and I find it a necessary tool to bring me from point A to point B through the day.  Standing for longer than five minutes is not an option for me and walking around the block isn't an option anymore.

The next step for me just arrived at my door.  Cimzia.  Another biologic that will hopefully put me back in to a state of remission.  I will administer two shots on the same day once a month, followed by my weekly shot of methotrexate.  I'll be honest, although I'm very excited to have received some private grants to help cover the cost (out-of-pocket for me would have been right around 2000 bucks a month!), I'm skeptical.  The last one had zero affect (Humira) and I don't have a lot of high hopes for this one.

I think I will end here. This has actually taken me three hours to put together and I'm exhausted.  I can barely hold my head up right now so I'm going to rest my body.

There is absolutely no way I could have gotten this far with this disease without my family and friends.  It just wouldn't have happened and I'm afraid if I was a weaker man I may have even checked out a few years ago when the pain had landed me in a wheel chair.  I get my fight from my mother.  Wow was she ever a fighter (  But honestly, fighting gets tiring especially when you see no results and no end in sight.  Perhaps through the process of writing I will sense more hope.

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