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

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

Wednesday, January 28, 2015

Who suffers most?

Life with Crohn's Disease is no cake walk.  I think that pretty much goes without saying (after all who wanders around thinking, "I have nothing much to do in life, maybe I'll go get Crohn's Disease to spice things up a bit?")

I face this foe every single day of my life.  Some days he brings me joint pain and insomnia.  Some days it is nausea and vomiting and intestinal cramps.  Some days I am just plain exhausted (not tired --exhausted) from the moment I pull myself out of bed.

Don't worry, this is not a pity party.

What I want to say is, if you don't happen to have Crohn's Disease, that's ok (um, yeah, it's a good thing).  You may not be facing the same problem that I am, but I know you have something.  Every single person on this planet has difficult struggles to face and daily battles to fight in one way or another even if we are not all facing the same demons.  

Often, if I tell a person about my autoimmune disorder and the fun that goes with it they are sympathetic and understanding.  I really appreciate that.  I think it is good for all of us to occasionally get a moment to whine or pout and have the supportive comfort of another human being to boost us when we need it and get us back on track.

However, sometimes when a person is introduced to my struggles they have a reaction more like, "Well, you have nothing to complain about, what I face it twenty times worse than yours.  Until you have faced what I am facing for as long as I have faced it, you will get no sympathy from me." Or something along those lines.  (And I've seen this is more than just my life, but I'm going to look at it from my perspective since that's what I am most familiar with.) 

Why is it that we sometimes feel the need to belittle or minimize someone else's suffering in order to crown ourselves king of all sufferers and leave ourselves standing proud and alone on the top of the hill of trials?

What good does it really do us to outdo the whole world with our sorrows?  What is the prize for being the Tsar of Anguish or the Emperor of Woe?

I have had people say to me, "Well, you are lucky you only have Crohn's Disease and not (fill in the blank terrible issue to deal with)."  I had a dear friend in my neighborhood facing breast cancer for the second time and someone said to her, "You should be glad it is breast cancer again instead of something you don't know how to deal with.  That's a good thing."

Um, having Crohn's Disease or breast cancer is not a good thing no matter how you slice it.  There is much to learn from these things, but smugly patting the head of a horrible life problem to make it seem trivial is not helpful or kind.

Life is hard for everyone (I'm pretty sure that is straight form the definition of life that came on our "do not remove under penalty of law" labels when we were born).  

One of the things that is most difficult for me about my disease is that I have six children.  "What," you say, "your children have nothing to do with your illness!" -- and you are right.  The trouble comes in that no matter how I feel when I get up in the morning, there are six little people who need me to be their mom.

No matter how tired I am, I have to drag myself out of bed to get things going for the day.  Even if I am hurting (and some days it is painful just to stand up straight), I have to help them get ready for school and do the laundry and the dishes because those things HAVE to be done (imagine the pile of dirty things eight people manage to create in just a few days -- we'd be submerged and naked before long).  

No matter how sick I am or how much I've thrown up that evening I also have to make food for my littles to eat (why do they feel the need to be fed EVERY!  SINGLE!  NIGHT?).  I don't have the luxury of only leaving the house or only cooking or only getting up if I feel like it.  That is one of the difficulties of my life.

Ah, but then you say, "Yes, that is tough, poor baby, but you also don't have to spend the whole day at work.  You can take a moment to lie down on the bed or to sit in a bath if you feel like it.  Obviously that means that working would make things so much worse,"

To which I respond, "Well, maybe, but I also can't take a sick day from my job.  I can't call in and tell my boss I just don't feel well enough to be in the office.  My boss is five and doesn't particularly care how I feel, she expects me to perform no matter what.  I am on the clock from 6 am - 9 pm and on call all the hours in between."

I can see you itching to jump in with your next point.  You are just waiting for me to stop talking so you can really lay it down on your next zinger...and the one after that, and the one after that.  

We could go back and forth forever.  But why?

Instead of trying to constantly one up each other, why can't we just RELATE to each other.  

Why can't you hear my sob story and say, "Geez, that stinks.  I'm really sorry that you are facing that."  And then you can tell me your story and maybe I can say, "Yikes, that is rough.  I know how it feels to be tired and frustrated and angry and alone (and whatever else).  I really would like to help if there is anything I can do to make things better for you."

So often, our problems are not even things that can be compared on the same plane.  There is no intelligent way to cross examine some of these issues.  It's not comparing apples and oranges it's more like apples and shampoo and aircraft carriers.

After all, how do you lay Crohn's disease beside depression or anxiety and expect to really make them comparable.  While dragons in your mind and dragons in your intestine may have some common features (exhaustion, muddled thinking, pain) they really aren't issues that can run parallel to one another.  

How do you contrast life with a disabled child to life with the loss of your spouse? 

How about crushing financial burdens and heartbreaking infertility?

When you lay a teenager making horrible life choices next to losing your job and means of supporting your family or caring for a dying parent or cancer treatments or lost limbs it is almost impossible to really line them up.

So which one is worse?  Which one is the most debilitating?  Which one is the biggest struggle in someone's life?

You can't choose.  You just can't.

They aren't the same.  They are each a heavy weight to carry, but not in a linear or comparable way. There is no winner of the "I face the most pain" award here. 

And even when your trials are similar, your life isn't.  I mentioned dealing with Crohn's with mothering a house full of kidlets.  That's rough (I can tell you from first hand experience).  But what about those that are trying to face a physical illness alone without the insta-audience?  What about those who don't get the support or the distraction of a house full of people all the time? Is their suffering more or less than mine?  

No, it isn't, it is different.  They don't have to force themselves to attend to the needs of others so they can plan their day in the way they want more easily, but they also don't have the regular hugs and laughs that come with family life.  Different.  No one more troubled than the other, just different.

There is no scale of pain that we can lay each of our life snags on to calculate the total to find that her suffering is 47 while his is only 38.  It's not about how much I've suffered versus how much  you've suffered.  It's about the fact that we've both been through hard things.

 More than likely, the most difficult struggle for anyone to face is the one that is on their plate right now.  The pieces of their life have converged to make that problem a focal point, a hitch, a sometimes seemingly insurmountable obstacle that they could use a boost to get over.

So, are you going to give them a leg up, or are you going to drag them down and keep them from making any kind of progress?

We both know what physical pain, emotional stress, anger, helplessness, depression, frustration, powerlessness, crushing weight, and terrible fear feel like even if we haven't experienced them to the same degree.  Can't we just choose to stand together on common ground and support and lift each other instead of tearing each other down.  Can't we shed a few tears as we understand what the other person is going through instead of  labeling them as a "lesser victim of life's pain" and casting them aside.

My life is hard sometimes.  

Guess what, so is EVERYONE else's.  

That's just the way life is.

Our struggles and issues should help catapult us into compassion rather than driving a wedge between us.  

Unfortunately, it's those nasty, unwanted struggles that make us stronger, that help us grow and learn and see the power that we have hiding, unopened, within us.  We can tap into those kernels of strength, but we can also help others tap into theirs when we choose to build them with support and understanding rather than undermining them with a scoff and an unfeeling eye roll. 

Maybe the best way to beat our own suffering is to mold it into the kind of benevolence which transforms sorrow into a potent asset in the life of another person.

Just maybe, when we turn our eyes away from our own trials and work to support someone else in their challenges we will find an even deeper strength to master our own dragons.     

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. 


Friday, January 23, 2015

Parker's Arrow of Light

Last night, my second son, Parker, was presented with his Arrow of Light award at his final pack meeting ever.  

He has worked hard and has pushed his limits as he has worked on requirements and projects relating to scouting.  It has been fun to work with him (sometimes doing a bit of nagging) and watch him grow.

This award is particularly important because it is the only cub scout award that travels with you as you enter into boy scouts.  

Park is pretty excited to keep chugging on in scouting with his new boy scout troop.  He is already totally sold on his scout master and the other scouts he gets to work with and can hardly wait to head to the Klondike for his first boy scout camp out later this month.

Scouting:  Good Stuff.

The mood is all set for the advancement ceremony.

It's hard to see, but Parker's old Weblos neckerchief is on fire, but it isn't burning.  Pretty cool.  


(My personal favorite moment of the program.  Thanks to Kevin Cleverly for the picture.)


Love this kid!

Tuesday, January 20, 2015

Moments like these...

Moments like these make me so so grateful to be the mom around here.  












The kids were out of school Friday and Monday so that meant four days together.  I will tell you the truth, it meant four days of never having a kitchen table clear of crumbs (I swear these kidlets have a sixth sense for when I have wiped things off because the second I leave the room they seem to be compelled to scatter food morsels across the freshly cleaned surfaces).  It meant empty shoes and socks (empty socks -- gross!) dotting every room because people around here prefer not to wear shoes or socks if at all possible but do not necessarily prefer putting them away when they pry them from their little feet.  It meant two full days trapped at home with each other while the Suburban was in the shop so everyone was stuck with just our family (the horror!).  It meant four days of vacuuming over and over throughout the day because bits of grass get tramped in on the carpet or paper bits end up everywhere from craft projects or the crumbs I mentioned earlier are not satisfied on the table and counter tops and migrate their way into the living room (sigh).  It meant fingers wiped on the refrigerator and juice spilled and not fully cleaned leaving only vague, pink stickiness.  It meant toothpaste dribbled down the front of the bathroom cabinet and balls and Nerf darts EVERYWHERE!!!

But it also meant time spent enjoying each other.  It meant being glad to put down my book to read to my five year old.  It meant "Mom, come see this!" over and over as we looked at sunsets and Lego creations and drawings and freshly painted sculptures and whatever else the kids had discovered or created.  It meant three little ones tagging along while I grocery shopped and the fun they had helping me choose which cheese or which yogurt or which cereal to bring home.  It meant kids biting into the bear claws that Aubrey chose for family home evening treat only to be rudely awakened by the fact that the bear claws were actually apple fritters which no one in this house likes(oh the good-natured teasing which resulted).  It meant one night where we simply could not stop laughing and when it was time for family prayer we worked to pull it together only to have someone start sputtering while Josh prayed and we all ended up in stitches again while trying to hold in all in and finish the prayer.

And while counter crumbs and empty shoes and paper bits are frustrating and annoying, I really hope what we remember most from these times together is all the other pieces.  I hope we remember quoting movies left and right.  I hope we remember casting spells on each other with bread stick wands.  I hope we remember dress up and belly laughs and cuddles and stories and all of the beautifully mundane moments that honestly turn this life together into something more than just watching time pass.

 They may be crazzies (and I may be one too), but they are forever and ever MY crazzies!  I think I'll keep them.


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