Where is Life's "Unfollow" Button?

I'm not a fan of support groups.  There are four types of people you'll find at any support group.

1)  the constant complainer
2)  the uninterested, only there because they have to
3)  the expert in everything who always one-ups everyone
4)  the one seeking to have and give support but won't be there long

I fall under number four.  I want to get support and I want to give it but I won't be there for very long because of the other three.  Most of all the people in number 3 really tend to push me over the edge. In fact, I have been known to drop out of college courses and even Bible study groups because that ooonnnneeeee person who has to tell their own personal story as an example to everything that is brought up.  They are so not-together and I get to the point that I'm tired of it and usually it's during the meeting that I make the decision to not return.  And then I tend to let them have it.  Yep.  I'm the one who calls them out on their bullshit right in front of everyone and then I don't return.  I don't return because I'm not being fed and I'm not having the opportunity to feed.  I probably should keep quite about it but I've had professors thank me so I think it's a trend I'll continue if I'm in that situation again.

I joined an online group.  I find the same people in that one and sometimes their rants can go on forever BUT I can ignore them with a click of a button.  

LOVE IT!  



Recently someone got on and vented about their pain and an embarrassing moment they had in front of their children. My heart sank a bit when she kept apologizing for sharing with us.  Why do we need to apologize when we share our pain with others?  Oh we all know why - judgment.  And judgment can lead to isolation and isolation just makes us even more depressed than we already are.  It's a mean, vicious, unforgiving circle.  But we need to understand that if someone judges us based on our sharing - we just need to hit the "unfollow" or the "I don't want to see this" or the "hide this person" button.  Kick them off your bus because their destination is different than yours.

Here's how I responded to this lady and I share it today because it is advice I needed to hear for myself.  

"This is your opportunity to teach your kids how to live life to the fullest through the darkest of storms.  This is the character you were chosen to play - this is your role.  How we approach it every single day is up to us and yes, it is hard.  In fact, most of use would agree, this disease is the hardest thing we have had to deal with in life so far but think of the things you can teach and pass on to your children:  your strength of character, your raw will to survive, your ability to overcome the greatest of adversity, your ability to wake up every single day - no, not just the ability, your GIFT..." to choose each day the attitude with which you face the pain.  And think of the humanity you can instill in them:  our ability to adapt to adverse

conditions, our wonderful dependency on one another which only serves to make the tribe stronger, and perhaps the greatest gift given to humanity - the gift to choose how we will react in the midst of turmoil.  Place your anchor in a higher power and know that even though the sails are ripped to shreds and you're taking on water - the anchor holds.  Blessings to you and please don't ever apologize for venting...that's why we are all connected, one to another, through this disease."

What Makes You a Man is What You Do What That Storm Comes

It happens about every three days or so.  I wake up in the morning and will immediately know if its happening.  I'm not able to open my eyes.  The sharp pain is unbearable.  The light actually causes pain and the eyeball itself is so incredibly dry that even eye drops are painful.  Immediately I stumble my way to the bathroom to start flooding my eye with drops.  The trek is long and dangerous as I'm not able to see and walking is painful.  I don't put a few drops in, I squeeze the bottle and soak it.  It typically takes about 5 to six treatments before I can get rid of the sand-paper that has replaced the inside of my eyelid.  I try really hard not to rub my eyes.  Crying helps but I can't muster up the tears to do it.  I work through it because I know it will get better in just a little bit.

There are several causes of eye pain in psoriatic arthritis patients. The first one I was gifted with is Iritis.  The iris is the circular, colored part of your eye.  It is made up of muscular fibers that become inflamed and cause pain from the brow line and through the eye itself.  Light makes it worse, of course, because it is the muscles of the iris that change the size of the pupil according to the amount of light coming in.

The final issue I have with my eyes due to inflammatory disease is dry eye.  Sounds like something that can easily be taken care of with some of those eye drops, right?  The problem with chronic dry eye is that you wake up in the morning with what I described in the first paragraph.  My eyes do not produce the right amount of tears.  In my left eye, I have lost 85% of tear production and in the right eye, I have lost about 45% of tear production.  Oh, in care you are wondering, I tried Restasis..woke up the next morning with raccoon eyes and red spots all around my eyes and eyelid. Me things an allergic reaction - you say what? :-)

I have focused most of the last 15 years on not talking about or complaining about the symptoms associated with inflammatory disease.  To me, I figure I don't want to hear about it so certainly others don't either.  There IS a very small line between informing and complaining.  No one wants to hear that and I certainly don't want to be the one everyone starts to consider as the conversation-downer. I keep it mostly to myself but in this blog I thought it would be good to discuss these things on occasion and maybe bring some sense of validation to others who suffer from psoriatic arthritis or similar diseases.

This journey brings about daily inconveniences.  Today my eyes are doing well but I'm walking with a very heavy foot and my chest is tight (costcochondritis).  This is the inflammation of a rib or the cartilage connecting a rib. That one right over the heart - that's the most painful one.  I find that if I had pressure there, it releases the pain for awhile.

Throughout the days, Robb will catch me pushing in on it and he knows exactly what's going on.  It is actually the most common cause of chest pain and can often be mistaken for early signs of heart attack.  I find that forced deep breathing helps, although painful at the start, to stretch the ribs and encourage blood flow.  I credit my training as a classical singer in providing me the resources to deal with that particular annoyance. In the beginning when I experienced it, I ended up spending five days in cardiac ICU because it mimics a heart-attack. Combine the pain and tight chest with anxiety and you have acting-out-a-heart-attack 101.  I won the Oscar that year for youngest cardiac patient on the CICU floor.  Three of my neighbors didn't make it out alive.  That was a rough time.

Each day there is either something new or something old that is repeating itself.  A pain here, a cramp over there, a pulled/spasming muscle over there.  It will typically dictate what I'm doing for the next couple of hours, how I'm feeling and my emotional state at the time.  

This morning doing ok.  Stiffness in my right hand fingers, tight chest feeling (subsiding as the morning progresses) and heavy foot which will probably stick with me most of the day.  Otherwise there is a smile on my heart and occasionally it tells my face to reflect that feeling.  If someone were to come to the door or visit I will be cheery and welcoming and the only thing they may see is a limp as I try super-hard to cover up the heavy foot.  I'll chalk it up to a sprained ankle or something - old football injury LOL.  Shaking hands is the hardest part.  I cannot tolerate much pressure on my right hand at all.  A hand shake will squeeze the knuckles inward and that causes pain like you have no idea.  So if I know someone is coming I'll put on a compression hand-glove and apologize for not shaking their hand.  I'll let them know that today I'm rehearsing for the Michael Jackson variety hour and they caught me right before I was to start sewing on the sparkly parts.  It makes everyone laugh and smile for a moment and that's what I want people to do.

I take the things that people say lightly.  So many times people will say things like, "this will pass" or, "I'm sure they'll figure this out soon".  But the truth is, there is no cure for this disease. They really have no idea what causes it although they say that some trauma to the body may bring it on but that's just a theory and a weak one at that.  It doesn't get easier, it doesn't get better, and there is no cure in sight.  There is treatment to mask this pain or the other pain and there are many different ways of 'dealing' with the many symptoms that come with this one.  But this is what I was given and I need to make the best of it.  I need to avoid what makes it worse, deal with what comes my way, and its up to me whether or not I allow it to affect my attitude.  Charles Swindwoll says, "I am convinced that life is 10% what happens to me and 90% how I react to it...we are in charge of our attitudes".  And he's right.  Regardless of what we may be facing physically or emotionally - the attitude that we embrace today is what makes us or breaks us.  

"Life is a storm, my young friend.  You will bask in the sunlight one moment, be shattered on the rocks the next.  What makes you a man is what you do when that storm comes.  You must look into that storm and shout as you did in Rome.  'Do your worst, for I will do mine!'. Then the fates will know you as we know you...as Albert Mondego...the man". 

(https://www.youtube.com/watch?v=9dXxTAu2RCM) 

RED ALERT! ALL HANDS TO BATTLE STATIONS!

I slept most of the next day which is something I prefer not to do but I don't seem to have a say in the matter.  It was the day after methotrexate (MTX) injection and I'm used to it at this point. The body has no vote and its not even open for discussion - MTX inside is ruling for the day and all its demands are met.  This morning (which usually occurs the first day after, not the second) this ruthless leader is on his way out with a vengeance.  No details for you but you get the idea I'm sure.  This part usually happens the day after but I think because I slept most of the day, it just delayed the process.  Something I'll notate for next week and figure out how to change.  I will return to normal working parameters in a few more hours.

Every morning I make a ship-wide diagnostic.  I take a mental scan of my body from feet all the way to my head before I move.  As I rise I'm on red-alert, all hands to battle stations in case something goes array.  Usually with this disease there is something that's not functioning well and one of the more upsetting features for me is that I all-to-easily pull back muscles.  Not sure what that's all about and either do the doctors.  All we can do is monitor the frequency of the spasms and hopefully they will decrease when I start the new medication next week.


TECHNICAL JARGEN ALERT!  Interesting, but with some big scientific words. I promise to try to include as many of these in my blogs as possible for all you science and biology nerds and geeks.

Before starting the new biologic, Cimzia, as with any biologic, a complete blood work up is done. They are looking for several things among them liver and kidney function and they also test for TB once a  year.  Like always, though, mine requires additional testing because during every TB blood work up the QuantiFERON-TB Gold result was inconclusive.  The QFT-G is an indirect test for M. tuberculosis infection that is based on measurement of a cell-mediated immune response.  Keep in mind that rheumatic diseases are basically a screwed up immune system.  So this test is a cocktail of 3 mycobacterial proteins that stimulate the T-cells invitro to release interferon-gamma, which is then measured.  Test actually detects infections that are produced by M. tuberculosis complex.  My test came back inconclusive so they need to run it again before I can inject a drug that compromises the immune system.  The immune system but also be operating within normal parameters before we hit it with a biologic.  This biologic specifically targets a cell in the immune system complex that is responsible for inflammation.  That cell is out of control - it refuses to obey it's original program and attacks the good soft tissue in my body instead of only attacking bad things.
SHAME on you, TNF (tumor necrosis factor) for not doing what you were originally programmed to do!  They are trying to take over the ship - all hands to battle stations - we're going to battle once more.

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, "...you 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 (www.bruceandbarb.blogspot.com).  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.