...and they all lived happily ever after...

...and they all lived happily ever after...

Monday, January 26, 2015

Aaaaah, remission: fun while it lasted

Over the last several weeks my forever friend, Crohn's Disease, has been making a slow and methodical entrance back in my life.  He likes to think he's stealthy.  He likes to think he has mad ninja skills.  

Yeah.  No.

I've noticed every twinge and every forward lean as he wormed his way back toward our "fun" (no, maybe more like memorable)  times together.  (Just so we are clear, his version of fun and my version of fun -- not even remotely the same thing!)

But, that's how things go.  

Last August I was pronounced clean of Crohn's down to the microscopic level (no, not cured -- that likely will not happen while I'm alive on Earth -- but inflammation free).

This is me today.

This is me four years ago just before I was diagnosed (so when my symptoms were near their worst).  I was pale and sallow and uber thin (for me, anyway, although you can't really tell in this picture how baggy everything was on me, but I weighed about 25 pounds less then than I do now).  I really don't want to go back to that place, it was ugly and oppressive and dark there.

You have to understand that being in remission is AwEsOmE!! but it isn't really life completely devoid of issues from your disease.  My intestines are damaged and my body is ravaged by not just my autoimmune tormentor but also the medications needed to keep this monster in check.  There are problems and symptoms that will never go away.  That's just how it is. And I am ok with that. 

However, being free of wrenching gut pain and unconquerable fatigue and varying levels of constant nausea is a pretty good thing if you ask me.  With those benefits in tow, I'll happily slap a "remission" label on myself and hope it never gets to an expiration date.

Unfortunately, for this round, over the last little over a month my "remission" label has meticulously been scraped away until I am now in the midst of a growing flare.  I am hopeful that I can get through this one without having to call my GI for additional drugs because the treatment for flares involves Entocort (a seriously nasty bit of medicine that I would really rather not invite back into my life -- but I will if I have to).  

There is a weight to the symptoms from the disease and a weight to the side effects from the drug.  For now, I'd rather deal with the nagging nausea, intestinal cramping, lack of sleep, loss of appetite etc rather than the skin pain, intense headaches, and mood issues that come from the meds.  Hopefully this flare will start to taper off in the next few weeks.  We shall see.  

But for now,  looks like my clingy disease pal and I are back together (boy I would love to break up for good).  

In the mean time, it is good for me to be reminded that I am human (I do need a strong dose of humility from time to time otherwise I just might attempt to take over the world).  It is good that I get to see the sweet faces around me at home step in to help when I just can't do it all.  I really do have the most amazing family.  Even my littlest littles are gentle and attentive to my cringes and painful gasps (they aren't always easy to hide).  I am grateful that they get to learn at such a young age how important it is to watch out for the people around them and try to reach out to make life easier for others whenever they can.  It is a great lesson to learn.  

Crohn's and I may not be willing companions (at least not from my end) but I still think I can learn a great deal from this unwanted pairing.  I may not like his methods, but through our time together I have grown to better understand some things. I've learned patience and empathy and endurance and strength and a deep and abiding trust in God that I might not have learned if we hadn't spent these last years in each other's company.  I hope I can use that understanding to bless the lives of others.  Then maybe I could say that there was more to this reluctant companionship than just abhorrence and suffering.  I know there is more to it than that if I am willing to look a little deeper, I know that even if I am not particularly thrilled with the opportunity, this disease will help me grow into the person God wants me to be.  

But I would still rather he be put to sleep for a good, long time. 

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