What is possible? A follow up to what if?

 "The only thing that makes life possible is a permanent, intolerable uncertainty:  not knowing what comes next."
-- Ursula K. LeGuin

A bunch of people were kind enough to give me advice, encouragement and support after my last blog post.  I updated that post with the response from my rheumatologist about the specific fluctuations in blood test results.  In short, she isn't going to worry.

The journey was an interesting one though.  The internet can take what seems to be a standard hang nail and turn it into a rare lung-eating fungus.  I am kind of embarrassed that I couldn't pull myself out of the negative what if and into the positive.  What ifs are full of possibility.  They are how people bring ideas into reality; how cities are built; how medicine is made; and how dreams come true.

How many times have you been the one consoling someone freaking out about something that isn't a reality?  Did you ever want to smack sense into that person and yell at them to stop worrying?!  Of course when you're the person freaking out about something, that is just one possibility out of a million, nothing anybody says can be soothing or helpful.  Funny how that works.  We tend to look into the world (or on the internet) to find things to support that what if we are stuck on.  For me, I am most afraid of going back to where I was (health wise) 3 years or even 1 year ago.  I now know what is possible in RA treatment and it is damn near perfect.  Yeah - so it is all drug induced at this point, which opens the world to potential pit falls.  If this is damn near perfect, then what could be better?  Nothing, right?  The only place to go is down - the drugs stop working; or I have a bad reaction; and on and on and on and on. 

Sick line of thinking....

For me the key will be to enjoy the moment and plan for the future based on what reality is right now.  That is all I/we/you have.  Yeah, my drugs may stop working and I may not be able to lift weights or even a hairbrush.  But that is not happening now!  The best piece of advice - enjoy this time right now, which DAMN IT....I'm going to do!!!

                  

What if?

Prudence keeps life safe, but does not often make it happy.  ~Samuel Johnson  

Here is the thing - I went to school to become a certified massage therapist back in 2000.  In 2002 I had my first flare up of rheumatoid arthritis.  In 2005 I quit massaging all together because it just was too painful.  In 2011 I started Enbrel which changed my life!  In 2012 (April) I added methotrexate (MTX) to the Enbrel which seems to eliminate the weekly fluctuations as the Enbrel wears off.  The Enbrel has me thinking I might be able to massage again.  I've been doing some research on what is needed to get licensed in the Commonwealth of Massachusetts.  It comes down to three (3!!) classes, which I can take at Cortiva in Boston.  Easy peasy lemon squeezy.

The conundrum...  The livelihood of my hands depends on Enbrel working.  There is no drug free remission that I am aware of.  I know I still have the disease because when I wake up in the mornings my hands are more swollen and stiff.  This improves as the day gets along though.  Last week I went to refill my methotrexate prescription and was told it was on indefinite back order.  (It has since come in.)  In my opinion the MTX can stay or go in my regimen, but what if this happens to Enbrel?  Or what if Enbrel stops working?  Or what if I have a bad reaction and have to stop taking it?  

Why am I obsessing over the what ifs?  I recently had my blood checked and a low immunoglobulin count came back (for the second time in 3 months).  Last week I had another check done, this time with an immunology panel checking for multiple myeloma or some other horrid malignant blood disease.  My rheumatologist wrote me a quick note on Thursday saying that all looked good, but would be back in touch if the anything looked weird with the immunology panel.  One of the checks was for the Gamma and Kappa light chain ratios, which is a very sensitive test that can identify blood abnormalities early on in disease.  I have access to my results on line and can clearly see that my Kappa free light chains count was low and the Lambda normal.  The ratio between the two apparently is significant and mine could not be calculated.  The foot note to this part of my test said:

"The free K/L light chain ratio cannot be calculated or is outside the defined limits.  Abnormal ratios can be seen in light chain myelomas, primary amyloidosis, monoclonal gammopathies with significant renal impairment, patients with chronic renal failure and rarely in autoimmune diseases..."  

Yeah - my problem is I check the internet too much.  (According to the internet I have about 4 years to live.)  I still haven't heard from the rheumatologist so of course I'm making stuff up about what is going on.  She will likely write back tomorrow and say everything is fine and that it is a normal finding in those with RA.  OR what if she writes back and says that it is a side effect of the Enbrel and that I'm going to have to stop taking it?!  (I can't consider anything more than these two scenarios at the moment.)  

And then we circle back to the massage therapy thing and the whole idea falls apart since without Enbrel, there is no being a massage therapist.  In these moments, it is hard to take a step back and remember that life is a journey and there are always what ifs to be considered.  Life is also full of risks and from those risks come both successes and failures.  I don't want to find myself years down the road regretting anything because I made a decision based on how the plan could go wrong.  I guess this is the question I need to replace What if with in the future.  

--Will I regret not doing this?--

I'm sure I'll get there eventually, but I'm still currently stuck in the moment with what if?

6-18-12 UPDATE

Aaaaand the response from my Rheumatologist was very unconcerned --

"About the lab tests....they are not always understandable.  but I am not going to worry.  at some point, you see so much variation, you investigate and then shrug.  without other signals, let's not worry. we can always repeat the test in a year.  you be well."

So what?

Writing has long been a personal and private adventure for me.  I just joined Twitter though and posted my blog address as part of my profile.  It is public now people.  I feel exposed!!    

Speaking of exposed - I attended a USAW Level 1 Trainer certification a couple weeks ago.  We focused on the snatch and clean and jerk.  (For those of you who think that is some kinky bedroom activity, the snatch and C&J are actually Olympic weightlifting movements.)  I thought the program was excellent.  The lead instructor was very experienced, funny and a darn good coach.  Her team was there to practice and show us their discipline, strength, persistence and patience.    

I have long considered Olympic weightlifting to be a primarily men's sport - for obvious reasons.  The first Olympic Games in 1896 included men's Oly lifting, however a women's competition wasn't introduced into the Games until 2000!!!  I was therefore surprised that the three lead instructors for this course were women!! In any case, this coach focuses on training her team to remain calm through adversity and to remember that it is no big deal if you make your lift, or you don't.  "So what?"  The use of profanity is not allowed in her gym, nor is having a meltdown.  Good life training.   

I was intrigued after the first day of the program and decided to Google her.  I learned a ton about her on the Internet.  Mostly I learned about her health struggles.  She has ankylosing spondylitis which is an inflammatory autoimmune disease affecting the spine and other peripheral joints.  She has been a competing Oly lifter for quite some time, so I'm sure that diagnosis was devastating.  I never got the chance to let her know of my own struggles, but the fact that she shared in public created a connection.  Inspiration.  I also learned on the Internet of her diagnosis of breast cancer.  She had a mastectomy, which wasn't obvious to me the first day.  (Of course the second day I did notice and felt sort of like an intruder on her personal space.)  I also learned that a year ago her cancer came back in the other breast.  I don't know where she is in treating it, or if she even decided to. 

The fact remains that through all of the adversity, she appears outwardly calm and present.  Had I not researched her, I would never have known of her struggles.  Whether I see her again or not, by sharing so openly she has left a piece of herself with me.        

I suppose in Olympic Weightlifting (and life), the following quote is appropriate:

We acquire the strength we have overcome.  ~Ralph Waldo Emerson

But as this coach reminds us, if you don't make your lift (or get your promotion, or make that grade) "so what?"  You can try again.