Friday, October 21, 2011

Helping A Friend

A friend, with RA and recently diagnosed with a complicated muscular autoimmune disorder, called me in a panic yesterday because she was just prescribed Methotrexate.  When the doctor explained the medication to her, all she heard were the words "a chemo therapy drug" and she freaked out.

About 16 years ago when I was first prescribed this somewhat scary medication I freaked out too-- Big time.  I'm not talking a little freaked, I was over the top freaked.  At that time I actually had to sign a 12 page legal disclaimer from my doctor to even get the drug and that scared the daylights out of me! 

That was pre-Internet and researching the medication on my own brought detailed medical explanations with little in layman's terms for me to understand.  So I talked to the folks at Lupus International* who brought me together with patients actually taking the drug.  These kind people talked me through, based on their experience, what I could expect and helped me feel better about my decision to start the treatment.

But that was a long time ago and frankly I can't remember much about my original side effects other than I know, without a doubt, my stress level over the legal disclaimer requirement and what side effects might/could/perhaps/possibly happen, pushed me over the edge.  

In the beginning, each weekly dose of Methotrexate brought me far more stress than was actually necessary.  Call me a drama queen but I imagined the worst possible scenario every time I swallowed my little yellow pills.  The anxiety surrounding my medication day made me literally sick to my stomach even though my body was responding positively to the treatment.   Not smart and eventually I figured that out.

Now I've been on the Methotrexate for so long, probably a combined ten of the last sixteen years or so and I find it to be a very useful drug in managing my lupus.  But I can't really give good advice to my newly diagnosed friend as to what to expect as she ramps up her dosage and starts on this journey.

Do you have any experience with Methotrexate that you would share please?

Thanks for your help.  Until next time...
Joanna J. aka Lemon-Aid

Photo Credit: © Scanrail -
*Under a different name at the time

Tuesday, October 11, 2011

Pushing My Luck

That is so not me.  I don't find moving that much fun.

Traveling, especially by commercial airlines, usually spells trouble for me.  It seems no matter how hard I try or how careful I am, a gigantic cold (or worse) is usually my vacation souvenir.  As a lupus patient, my immune system is often less than glowing and my recent travels reminded me of that fact.

In the last four months, I've made five round-trips between Los Angeles and Ohio to spend time with my family.  My sweet step-father recently passed away and Mom just moved from their large home into a senior living community, so I've been back home pitching in and helping with all the things you'd expect that comes with the events of the past few months.

This time though, my usual semi-below average energy level kicked into high gear and I was able to go non-stop, day and night, on every trip.  Perhaps it was a sort of "crisis management" mode or maybe all the adrenaline from losing my dad and trying to make Mom's move as smooth as possible, or perhaps I was just plain lucky on my first four trips.  But on trip number five, I came home with a miserable chest cold and am fighting to make sure it doesn't get any worse.

Why I was able to go all out before I crashed with this cold remains a mystery.  My sisters were amazed, and frankly I was too, that I was able to do so much physical labor on so little sleep during a very stressful time.  I did a ton of work-- packing, schlepping, hauling and running around without so much as a Prednisone booster shot.

I've learned over the years not to question these rare bursts of energy.  I'll take 'em when I can get 'em and greatly appreciate 'em while they last.  There seems to be no rhyme or reason as to when or why they appear and disappear at random but I sure wish I knew how to trigger those "Energizer Bunny" activities on command.

This cold is kicking my butt and yes, my joints are beyond sore and swollen from all the heavy lifting, stair climbing and the likes from packing back in Ohio, but we got the job done for Mom and that makes my current health state worth the trade-off.

I do not like that phrase-- "Trade-off--" but it's my reality.  Deciding between how much I do versus how I will feel as a result is a slippery slope sometimes.  I make smart choices regularly on how best to use what energy I have, but at times like this, my "smart" choices are a little more clouded with what I feel I need to do versus what I really should do.  This time around I'm grateful I had the energy when I needed it making this cold a small price to pay.

Do you juggle your energy and how's that working for you?
Until next time...
Joanna J. aka Lemon-Aid
Photo Credit: Msaario Beauregard - Fotolia #22061180