The Journey

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

Monday, August 11, 2014

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 Albert Mondego...the man". 

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