The Journey

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

Monday, September 1, 2014

Video Blog

video

Day Ten and All is Well

I got to the point that I thought, "well, this is now my life. It's all downhill from here". And then I crammed two thick needles of every thick liquid into my upper leg.  That was ten days ago.  I have tracked how I'm doing on the medication in a logbook:

  • Day One: 
    • No change
  • Day Two:  
    • What?  I'm walking with little pain?  What's up with that?
  • Day Three: 
    • I just spent two hours cleaning the garage.  Bending is an issue so I'm being careful but wow, I can actually grasp things with my hand.
  • Day Four: 
    • I got right out of bed today. No need to go back to bed. Energy level is up, pain levels are down, significant reduction in swelling.  Hip and lower back still hurt
  • Day Five:
    • Tired.  Exhausted. Can't think straight.  Brain fog.  Going back to bed.
  • Day Six:
    • Still having bad hip and lower back pain - could be the kidney stones moving but i doubt it.  I can't bend over and when I do it's right to the floor I go.  Tired.  So very tired.
  • Day Seven:
    • Joint stiffness lasting all day.  Tired but energy enough to focus on some tasks
  • Day Eight:
    • Foot hurts like hell.  Hips and lower back have seen absolutely no change, in fact, I wonder if since the inflammation has gone down, more nerve and bone are exposed and that is causing more pain?
  • Day Nine:
    • Again spent most of the day in bed.  Went to visit friends and got very stiff and started limping again. Foot got heavy.  Pain increasing all over the body.  
  • Day Ten:
    • And here we are.  Ten days.  I went back to bed after seeing Robbie off to work as I usually do but got up two hours later.  I could have slept till noon, easily, but I was actually able to force myself to get up (the cup of coffee helped, too).  
Each day I do a mental systems-check.  Today's results:
Toes: swollen, red, but able to wiggle them ever so slightly which is something new in several years.  Still, painful to put on and take off shoes and socks - forget it - wow those hurt coming off.
Ankle:  weak, crunching when it moves, not very steady on my feet
Legs:  weak and I don't trust that they are going to be there for me to keep me upright.  I spend time using walls and furniture when navigating around the house.  Not a nice sensation
Tailbone:  wow - en fuego - seriously painful and hips.
Hands: major reduction in swelling - grasping ability adequate; functional
Shoulder:  easier to reach above my head today - I supposed that means I can start dusting things higher than my nose now.
Eyes:  scratchy, dry, blurry...just not pretty
Voice: this ever-present "frog" in my throat, swallowing is intentional and deliberate, not automatic like it should be; tried singing a few notes - sound like I've been smoking for thirty years and my once 3+ octave range is now sitting at a VERY difficult one octave...



Monday, August 25, 2014

Today is a Diamond

There is a John Denver song my mother used to quote all the time.  Of course, in my Mom's style, she wouldn't speak it, she would always sing it.  It's called, Somedays are Diamonds, Somedays are Stone.  Today...it's a diamond and its about time as the past couple of months have been very rocky!

I took my Cimzia shots on Saturday, and on Sunday I felt okay.  Nothing major.  Then I woke this morning and without thinking I immediately got out of bed and was halfway to the other side of the house before I realized I was in very little pain and was walking fine.  I had to laugh a bit, actually, and wonder if I was having a dream.

I still have pain but I've already seen a good reduction in swelling and mobility in my hands.  I'm cautiously optimistic.  This is supposed to get me through an entire month before my next dose so we'll see what happens.

As I listen to this song and focus on the diamonds vs stone I am reminded of the immense pressure that is involved in making a diamond.  Did you know that it takes up to 1 Billion years for a diamond to form?  And scientists believe they don't come from coal as we have come to accept (http://geology.com/articles/diamonds-from-coal/).  But the pressure that it takes to form a diamond is incredible (yes, I'm also reminded of that great line in Ferris Bueller's Day Off but I'll let you reference that one in your own minds).

We've all been under pressure throughout our lives and there will be other times.  And I am convinced, as I have always been, that it is part of the refining process.  When the pressure is relieved for a bit we have a little more clarity, a little more shine to our spirit.

One of the great pressure-releasers in my life has been the love and support of people.  Through the years they have changed names and faces and some of them have gone and some of them remain.  I recently reconnected with someone who was very dear to me during the last half of the nineties.  What a blessing to reconnect with her and know that our mutual respect and love for one another is still as strong as ever.  It is those simple acts or reaching out that bring me more comfort from the pain than medications can.  Reach out to someone today and share the love with someone, won't you?  who knows - maybe through that simple act you'll turn someone's stone day into a diamond day.


Sunday, August 24, 2014

Life - Dismantled

I recently read an interesting article on chronic pain.  It attempted to relay to people the differences between chronic pain and the pains experienced when growing older, or temporary pain.  I don't try very hard to explain to people what it means to be in the type of pain I experience.  Generally speaking I try to keep my mouth shut and act my way through it as if all is fine. But truth is, the pain varies from day to day and through-out the day.  From the inability to brush my teeth to being bed-ridden, it varies with the changing winds and weather. But one truth is, well, painfully clear:  it's always there.  And then there was this quote:

"...unless the pain is severe enough to completely dismantle the person's life, it is far from the same experience, physically and emotionally"

As I speak with my friends around the world who live with chronic pain, there is one particular idea we all agree on.  We don't want to tell people about our pain - we simply want others to stop telling us things that aren't true.  "It will get better" or "hang in there, things will turn around" is akin to telling a dying patient on their deathbed, "you've got a lot of life still in you" or "keep fighting, you're winning this battle".  It's an insult to the one receiving your words.

The people around us, the ones who care and love, are also experiencing a certain type of pain. It's the pain of being a witness.  Those very close to us see the day-to-day attacks on our bodies and our minds and are so frustrated knowing they are powerless.  Communicating through words is what we do yet finding those right words is not always easy.  All to often we choose the wrong words, thinking at first that they are offering encouragement and comfort.

So what are we to do, then?  Remain silent?  Go on as if nothing is happening?  Of course not. Both sides need to come to an understanding that our language is limiting us.  But we can take a few extra moments to come up with softer words and words that reflect truth and not false hope. We need to understand that for the life of someone living with chronic pain, their life has become completely dismantled.

Some things that people in chronic pain wish others to know:

  1. Please understand that being sick doesn't mean I'm not still a human being.
  2. Please understand the difference between "happy" and "healthy".
  3. Having chronic pain means dealing with multiple issues, many of which are invisible to you.
  4. Chronic pain is variable.
  5. Understand that sometimes getting out and doing something does not make me feel better, and can often make me feel worse.
  6. If I say I can't keep walking/riding/socializing...I mean it.  I'm not being mean, I'm just 'done'
  7. If you want to suggest a cure to me, don't.  Remember that I'M the one who wants to get better and have spent countless hours researching and talking to this specialist and that one.  Chances are if you've heard of it, so have I.  If something out there works, we will know about it.  Thanks to social media, those of us in chronic pain are very well connected
  8. If I seem a little touchy or moody - it's because I am and if you tell me to snap out of it I'll probably mentally snap on  you.
  9. We depend on healthy people to be around us.  


Here are some helpful things to say to people who are being torn down every day with chronic pain.


  1. This must be so difficult for you, I can't imagine.
  2. I wish I had something to say that would help/take away the pain but i don't.  But I am here to listen.
  3. I hope that today you are feeling as well as possible.
  4. You are in my thoughts and prayers.
  5. You look good today, but how are you actually feeling?
  6. I love you.
  7. Do we need to cut our visit short so you can rest?
  8. Would you like to hear about this crazy adventure I had yesterday.

Oh and one more thing:  we still have a great sense of humor.  We don't necessarily appreciate jokes at the expense of our chronic pain...but we do love to laugh.

Saturday, August 16, 2014

A Temporary SetBack

It started the night before.  I'm never sure if it is a sore throat, an ear ache/infection starting, or the arthritis.  

Rheumatoid arthritis affects the cricoarytenoid joint.  When I first learned this I was absolutely devastated.  I had just completed a concert and was overjoyed that I was actually able to make it through the rehearsals and the show.  The show was a success and it was to be the mark of a major vocal comeback for me after being away for almost thirteen years.  But the very next day I thought I had a sore throat or an ear infection or that I had perhaps just a really tired set of vocal bands from the concert.  I was careful to sing correctly and take care of my voice (I'm a classically trained singer so I have the right tools and I know how to use them).  But no training at all could have prepared me for the diagnosis.  The cricoarytenoid joint is the joint between the cricoid and arytenoid cartilages in the back wall of the larynx.  The Cjs are rotated by the vibration of the vocal cords, thus changing the tone of the voice 1  This can cause hoarseness, a sense of pharyngeal fullness in the throat when speaking and swallowing, pain in the ears and dyspnoea (difficulty in catching your breath). 

Today I'm battling these symptoms but stubbornly treating it like an ear infection. I'm taking in more fluids and zinc supplements and warm tea and putting myself on vocal rest.  I had to cancel future engagements and let down some ticket holders.  I cancelled anything that required singing or talking and sadly said "not now" to a chance to sing at a church of a college friend.  I had to say no to an opportunity to preach recently as well.  You just never know how much you depend on things like your voice until that is taken from you.  I could teach a course on this now.

However, what I need to do is come to grips with this and seek the advice of a specialist and touch base with either my current vocal coach or my undergraduate vocal professor who, to me, is the guru of all things vocal.  This disease has so far stolen my enjoyment of walking, dancing, organ playing, and now seems to want to take any hopes of a revitalized singing career away as well.  Now, many of my friends and family will say things like, "it'll get better" or "stay strong it'll all work out" but the truth of the matter is, there is NO CURE for this damned disease.  We have medications that we're trying that will mask it and take away a few annoying side effects but remember that when you get rid of a side effect you typically trade one for another (you've heard those annoying Rx ads on tv that go on for ten minutes discussing the side effects).  

Today I was to start my cimzia injections but now I need to wait another week.  It must be taken on Saturday as it is timed with my mid-week injectable methotrexate.  I'm waiting because I'm not 100% sure if what I'm experiencing is a sore throat, ear infection or swollen Cjs.  I can't start this medication if I have any type of infection going on.  All I know today is that I'm angry - very angry - at the thought of loosing yet another love in my life - singing.  But also focused on not giving up and praying for a miracle.


We all experience set-backs.  Some are temporary and, as this quote says, launches us into something great.  Some are permanent and some even lead to death (which we all hope is also launching us in to something great and wonderful).  I would love to hear from you on how you can now look back at a set-back and see how it launched you into something wonderful.  Please share with me on either facebook if that link is how you got here, or an email (info.orcvirtual@icloud.com) or by posting a response to this blog.  







 (Stringer SP, Schaeffer SD. Disorders of laryngeal dysfunction. In: Paperalle MM, Shumrick DA, Gluckman Jl, Meryhoff WL eds.  Octolarygology, edn 3. Philadelphia: W.B. Saunders, 1991:2257-72)

Thursday, August 14, 2014

If It Doesn't Challenge You - It Doesn't Change You



I slept in until around noon, waiting for the nausea to get to the "I got this" stage.  It's a battle between my stomach and my head as to who will win the great dizziness race.  Usually my head wins, even now feeling like it is swimming inside my skull.

I saw this quote and it motivated me today to get up - shower - get dressed - and go out.  We spent time walking in the mall, having lunch, and doing some light shopping.  I spent a good portion of the day reaching up and holding either my forehead or the back of neck to maybe settle down the swimming sensation I had from the meds.  It's a mental thing but sometimes it actually works.

I WANT to lie down - to just ride it out the easy way and sometimes I have no choice.  Sometimes my body shuts down and I have no other option but to lie down but today I pushed it.  Robin was constantly checking to see if I needed to return to the car or return home.  But I kept pushing it. Right now as I type and look at the computer monitor I feel dizzy and I'm sweating.  I'll go lie down for a bit now, start to unwind.

But today I faced the challenging side effects of methotrexate and I feel I have won.  But how has it changed me?  It gave me a little extra dose of that "I can do all things through Christ who gives me strength" feeling.  As long as I do my part, I know the Spirit will do the rest.











Wednesday, August 13, 2014

May All Be Loved...Healed...Sheltered...and Free From Pain

Every Wednesday night its the same thing. I generally forget (conveniently) that it is Wednesday and then around 9:00 p.m. Robin informs me that its shot night.  AHHH!!!!  I have to fill a syringe from the bottle and inject it into my leg.  They say you can use the stomach but yeah, no WAY am I going to do that.  People tell me its no big deal and painless but I'll stick to the leg, thank you very much.

I'm in a good mood today. I've been listening to Michael Buble and Frank Sinatra and singing at the top of my lungs.  I sat at the piano and made up a few songs and played some old ones.  I spent time with the cats and enjoyed the sunshine on my face for a brief few moments.  My pain levels are tolerable but in 12 hours I'll be curled up on the couch in the fetal position with a bucket next to me just in case and a cool cloth on my head. Robin comes out and checks on me frequently during the night and he knows that getting up in the morning is going to be really hard for me.

I'm still waiting for my blood work to come back that will tell me if I can start the new medication this weekend.  I'm nervous because I have no idea how my body will react.  

I tried calling my Dad throughout the day today.  He has no idea of my battle and he doesn't need to know.  Besides, he will forget anyway - Alzheimer's will see to that.  But I like to hear his voice the day I take my medication.  It grounds me and prepares me for the next 42 hours.  

As I take on the next day I am reminded that the day after is not far off.  I will drink lots of water, keep my head down and try to watch movies most of the day if I can.

May all be loved.
May all be healed.
May all be sheltered.
May all be free from pain.

May I be loved.
May I be healed.
May I be sheltered.
May I be free from pain.


Tuesday, August 12, 2014

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."


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 you...as Albert Mondego...the man". 
(https://www.youtube.com/watch?v=9dXxTAu2RCM) 



Friday, August 8, 2014

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.

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, "...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.