Sunday, August 21, 2011

Once a Flower Child ...

... always a flower child, I guess.  On my birthday this year as I enter my sixth decade, I'm ruminating on love and its many definitions.  In The Four Loves, C S Lewis wrote that there are four types of love (affection, friendship, eros & charity).  As much as I admire his writings, I suspect there are many more than four if we really think about it.

My very favorite type of love is charity, which I believe can be expressed as forgiveness, compassion, generosity, empathy, sympathy ... and I bet you can think of others I forgot.  Charity-love is for me the hardest to practice consistently, and the most lacking in our world today.  Mother Teresa is my model for perfect charity-love.  While I know I'll never approach her saintliness, I read from her book No Greater Love and try to grow through her wisdom almost every day.  I still have a very long way to go.  :)

The Sixties was about free love, anti-war love, loving change, but with the Sixties came a concept that I fear we have overdone a bit, and that's self-love.  As parents and teachers, it seems to me we have placed too much focus on self-love for a couple of generations, and the societal results are clear: materialism; hate-mongering for those who aren't just like us; hero worship for athletes & celebrities who haven't earned our respect but reflect how we want to envision ourselves; churches where we demand entertainment instead of soul-searching and reflection.  Maybe I'm just getting old, but it looks to me like this whole self-love thing isn't working out well for mankind as a species, and particularly for American society.

So, my annual reflection on where I stand and what I plan for the coming year leads me to this resulting resolution - I am going to concentrate on sending my love-energy outward and see how that goes.  I will try not to miss an opportunity to display through my actions that I believe every living creature is deserving of my love.  I will try to have more empathy for people who aren't just like me, people who make mistakes, people who may be harder for me to love than myself.

I guess you can take the sixties away from the flower child, but you can't keep the flower child out of her sixties.  Peace, man! 

Friday, August 19, 2011

Hold On - We're Making a Quick 180!!

Well.  What a difference a day makes.  My rheumotologist called me Wednesday - yes, the doctor herself!  After pleasantries were exchanged, she got right to business. 

"Are you drinking alcohol?  No."  Have you started taking any medications I haven't prescribed, even OTC stuff?  No." 

"Well then, I want you to stop your methotrexate therapy immediately, no more injections.  Uh, okay...why?"

I'll spare you further transcription of our conversation (you're welcome).  My liver enzymes are through the roof on the every-two-months bloodwork I had done on Monday.  MTX has started to cause liver damage, which is a pretty common side effect.  After a 3 week cleansing period, I will visit the rheum's office for a loading dose of Cimzia, her strong recommendation for my first biologic.  She has urged me to go with Cimzia, because it's much faster acting than the other drugs in its class, and we'll know in 90 days if it's going to work, rather than the grueling 6-9 month trials other drugs require to assess effectiveness.

Ironically, all my angst over starting a biologic drug, and my triumphant decision to give it the go ahead, lovingly committed to the ether here on my blog, is essentially moot - a complete waste of the energy and importance I gave it.  Maybe this will seem humorous at some point in the future ... the faaaarrrr future.

Right now, it just seems like another of ra's dirty little tricks, another insult to body & mind & the fragile illusion of control that I continue to cling to.

Being an unrepentant control freak, I don't handle these twists & turns so well.  It reminds me of an experience as a passenger in a 1969 Camaro hotrod a few years back.  As the ranger of a state park that contained the steepest, curviest 3.4 mile mountain road in New England, I hosted a number of races on that road - foot races, luge (where the fools ride skateboards 60 mph down the twisty road lined with huge boulders - but that's a story for another day), bicycle races, and of course car races.  I was offered a ride in the Camaro during a practice run for the semiannual car races.  Sounded cool.  Might have been if I were driving, but the guy who was driving decided he would do his best to make me pee my pants.  For months after, the only vehicles I rode in on that mountain road had me at the wheel - did I mention I like control?

Guess I need to just buckle up, because apparently ra is in the driver's seat on this ride.  Control is just an illusion.

Wednesday, August 17, 2011

How to be a Real Man

My friend Ray died this morning, in his house with his family by his side.  It stinks that he died, it stinks that his last year was all chemo and radiation and doctors and hospitals.  And most of all, it stinks that there aren't that many men like him these days, and we'll miss the pleasure of his company.

Ray found out he had metatastic cancer last August.  He and his wife Shirley were on their long-planned trip to Alaska when suddenly, he couldn't breath.  He was flown home, underwent tests, and got the very bad news - multiple organs, lungs, brain.  It is phenomonal that he did so well for so long, but Ray decided he had things and people to take care of.

He continued in his volunteer position with our Property Owner's Association - sometimes he was out of pocket due to hospitalizations and treatment - but there was a neighborhood that needed taking care of. 

Ray also made sure his family was taken care of so they would have no day-to-day worries when he was gone.  He took care of the paperwork to give his son his truck.  He sent the kids out with Shirley to get her a new car so she would have a warranty and no service problems.  He even made his own funeral arrangements, so his loved ones wouldn't have that burden in the days after his death.

Ray arranged for hospice care when he got the latest bad report.  He came home and prepared to die.  He discouraged us from visiting him these last couple of weeks, and I'm convinced he was once again taking care of his friends so they wouldn't remember him with sadness. 

I definitely won't remember him with sadness - admiration, respect, fondness.  How can you be sad about a man who knew exactly how to live, and - when it was his time - knew exactly how to die?

Forget the sports stars, the movie stars, the politicians and musicians - my friend Ray was a role model for how to be a Real Man.

I'm sure gonna miss him.

Tuesday, August 9, 2011

Cover the Mirrors, Don your Black Threads....

My family is in mourning, but no one knows. We are fortunate that we haven't lost a loved one. What they mourn is life as we knew it just a short year ago.

Sometime in the last few months, dawn has broken and my family has realized that I may not ever be who I once was. At the risk of sounding brash, I was the spark plug of our family life; the one who had ideas, planned & executed gatherings, cooked too much food, urged the grandkids to try new things, and cared for those who needed help. I was Type A and proud of it - my mantra was "let's make it happen!" My family is seeing what I have known for a long time - this rheumatoid arthritis is not just an illness that you treat and it goes away.

Since my diagnosis with ra (I am now refusing to grant it capitalization in my blog - take that!), I rarely have the energy to make more happen than personal hygiene and basic household chores. In fact, as I type this I'm sitting in my pajamas at 1:20 in the afternoon because I'm not quite up to showering & dressing "for the day".

I have left my job, stopped my volunteer activities, and essentially become the last person they can count on, because I never know what pain, stiffness and fatigue each day will bring. I often have to cancel plans at the last minute with family and friends. It's just the nature of the disease, and frankly, I have become very selfish of my energies because I've found I fear the payoff if I overdo. Two of my grandsons came for their week at Nana's in June and determined to make some fun for them, I was too active - I spent the next 10 days in the worst disease flare I have had since starting treatment. I can actually see the damage that those 10 days caused when I look at my hands. I simply can't risk that happening again until I find a medication that is suppressing my disease activity better.

So, I have a plan (Type A all the way). After resisting, studying, soul-searching, vacillating ... I have decided to take my doctor's advice and start one of the new biologic drugs for ra (didn't forget, you won't get a big letter out of me!) I hate the idea of putting that crap into my body for many reasons, but mostly because it's so new and no one knows what the long-term effects can be. I have decided to choose hope of improvement over fear of what may be.

And I've decided to choose a chance at returning to the person I used to be over the safety of being the person I've become. Because I want my family to mourn me after I'm gone, not now.

Wednesday, August 3, 2011

Chronic Pain is Not a Symptom

I can remember a few years ago when I thought I understood chronic pain. Simply put, chronic pain is any pain that lasts more than six months. But when it happened to me, I responded in typical manner by researching chronic pain to better understand.

It was then I realized how shallow my understanding really was.

For many years, I medicated for nagging pain with over-the-counter NSAIDs. But since my RA decided to get really serious about attacking joints & organs, I have experienced constant, daily and unrelieved pain that just isn't touched by nonprescription pain medications.

I am one of the lucky ones. My rheumatologist asks about my pain, listens, and makes pain management an important element of my disease treatment plan. Through my participation in RA support groups, I have learned that her approach is somewhat uncommon. It is shocking to me that many, many RA patients report their rheums refuse to prescribe pain medications. Some even refuse to refer their patients to pain management clinics, or question the patient's description of pain, saying things like, "You have no joint damage, so you couldn't be in the pain you're describing." It's impossible for me to imagine how I would respond if a trusted doctor said that to me, but I suspect it wouldn't be pretty.

Effects of chronic pain are well-documented:

Sleep disturbances and resulting fatigue;
neurochemical changes that cause ever-increasing sensitivity to pain;
increased tension, anxiety and fear of injury;
weakened immune response;
depression and/or anger;
and more.

Consider that all of the items on that list are effects of Rheumatoid Arthritis (or its treatments) even without chronic pain. Add chronic pain, and it's no leap in logic to assume that one should attack both elements of the disease with equal vigor to achieve best results and a semblance of normalcy for your patient.

I believe that chronic pain is an integral part of my disease, not a symptom. And that treating that pain is as important to my overall health and ability to battle the disease as any of the other treatments I undergo.

I am very lucky that my rheumatologist knows the secret to compassionate treatment of RA and its sister Chronic Pain. I'd say that I wish she could share this secret with other docs who treat RA patients ... but that would be wrong.

Her secret is that she has RA.