Cease Fire….

I have often said that our experience with arthritis has been like a war – a series of battles.  It’s been one step forwards and two steps back, constantly searching for the right treatment and waiting to catch a break.  The damage from the war has been severe, and we grew so accustomed to it, we almost stopped believing it could end.  And then this….

A prolonged cease-fire.

Over a year ago, things turned around for Caitlin.  Actemra seemed to control her symptoms.. or perhaps it was coincidental to whatever changes her body was going through… I can’t really be sure and I’m not really interested in sticking my head inside that Gift Horse’s mouth.  Her infusions were spread farther and farther apart.  The prednisone in the medicine cabinet actually expired.  As did her refill prescription for vicodin.  And Naprosyn. We lowered the dose of methotrexate… until that too, was gone.  All we have left is tylenol or motrin for over-exertion days…. and collectively held breath.

Days, weeks, and months have passed without one SINGLE morning of hobbling out of bed. School days have only been missed for the common cold, or the last few infusions.  The school nurse hasn’t called me at all this year – I saw her one day in the office and she hugged me.  I think we sort of miss each other, but I know she doesn’t miss the helplessness of having a student in pain every day.  I don’t miss getting on the phone with my daughter and insisting she try to tough it out through a math test, or an oral report.

I’ve said it before, but I don’t think I can say it enough.  There were many days that I thought we would never get here.  Really, truly.  And there is a part of me – a scared, somewhat superstitious part - that kicks myself for even drawing attention to this cease fire… as if Fate has forgotten about us and will turn its ugly attention back this way.  But I know how important it was for me, in those early war years, to see kids who had “emerged”.  I remember clearly seeing Katie M. at the JA Conference in San Diego – she was also systemic and she was about 14 at the time.  She was so tall and healthy looking – like a beautiful colt.  Caitlin had just fallen below the zero percentile on the growth chart, stunted by prednisone and inflammation.  Seeing Katie shone the light of possibility and hope into our world…..just as I hope that Caitlin’s current cease fire will do for others.

The joy of this wonderful time is tempered by a few things.  First, we know that this is temporary.  There is NO CURE for this disease yet – but there are increasingly effective treatment options. It is statistically very unlikely that Caitlin won’t flare again – we just don’t know when.  I try to remember this every day, so that I can always maintain gratitude for all we are blessed with.  When the war resumes, it would be so painful to look back longingly on the cease fire and wish we had appreciated it more.

Second, though our little troop gets a cease fire - so many of our friends are having the worst battles of their lives.  I feel guilty for our good fortune when I read about the daily struggles of my good friends Parker, Sadie, Kenny, Lily and Jordan and so many others.  We did nothing differently – we didn’t pray any more, hope any harder, spend any more energy or shed more tears…. and yet, we are the lucky ones right now. I almost feel embarrassed offering support and advice to those warriors, as if I have no “cred”-  because I am walking around in a dream world.  I don’t even think I have a syringe or an alcohol wipe in the house right now!  And my poor friends are having shots daily, having ports put in, staying in the hospital multiple times.  Why?

All I can do is stay focused – not only on enjoying every good day as it comes -  but on preparing for the bad days again.  By continuing to learn about new medical opportunities, by advocating, by raising money for research.    I think it would be easy to think I could avoid re-enlisting in this “army”, and stop thinking about arthritis…. but I can’t. Because this is a war that continues as long as people are still suffering – and I have to stay in the fight.  How could I not step up my fight when so many of my fellow warriors are still in battle?  How could we give up before there is a cure?

I was inspired by this portion of the American Soldier’s Creed.  I actually used this in a speech I gave at a national meeting of the AF.  It seems totally correct to me.

I will always place the mission first

I will never accept defeat

I will never quit

I will never leave a fallen comrade

This entry was posted in Actemra - Tocilizumab, Awareness / Advocacy, Diagnosis, Prednisone, Remission. Bookmark the permalink.

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