A Familiar Story

I saw this and was too inspired not to post it here.

I've been through all of this, even the non-"cute" version of this medicine, where I very much had to see the needles.
I always have such weird feelings when I hear of others' diseases because so much of an illness is suffering alone.
"What a terrible thing to doubt your own reality," he says, and that sums up the existential chaos of autoimmune right there.  So much of a disease is defiance, persuading ignorant others that there really is a problem, that there's almost a badge of "I've suffered more than you" that comes from the need to prove your pain.
And it's videos like this, it's sharing your sufferings and your truths that breaks the assumed solitude that is often diagnosed along with an illness.

This video is incredible.

It's Easier Balancing the Headstand

My health comes in waves.  With autoimmune, my symptoms and needs tend to shift dramatically every few months, affecting my sleep cycles, pain levels, ability to eat, to move, etc.  And despite diligently following the rituals of whatever the health god within me decides it wants that week, I’ve had a significant flare about once a year over the past four years.  And this is considered remission.

Now keep in mind, every body, even the ones with the same diseases, face different symptoms.  So for me, a flare means enough pain that I can’t eat, hospitalization until it’s “treated” and then leaving the hospital and feeling like a college graduate who’s supposed to be set to succeed but feels no different than the day before.

A.K.A. I’m not usually back to 100% for maybe…another year?

It’s a lot, but I do love my Crohn’s.  It forced me to become independent before I knew that was an option.  It’s how I have amazing friends that I’ll have for the rest of my life.  And it’s where I grew my empathy.  Thus I promise this isn’t a sympathy ploy.  I share these insights so you can begin to understand my excitement to be a little bit closer to being back on my feet.

And I’ve been doing yoga :)  I did dance as a kid, physical theatre in high school, circus in spurts throughout college…and I’m learning that expressing myself physically is how I tap into the essence of who I am.  Physical conformity, whether that’s constraining myself in a uniform, not being able stretch or move, just standing as a decaying tree…it’s my bird cage.  And I can only fly when I am present in my body.

Now physically, this isn’t something I can commit to.  This is like having a temporary gig that pays well and feeds you.  It’s wonderful but you know it will eventually end, so you eat up, get comfortable, but not complacent.  

And I do have to be careful not to overdo it.  Again, it’s not a set rule (because my body likes to change those just as I begin to figure them out…) but generally when I push myself, I tend to oversleep the next day by about six hours.  It’s like my body has a manual override.  This happened once from walking.

Yup.

So...with that in mind, to be able to have a morning routine.  To be active again, maybe ready to take a class with fewer rest breaks than I’ve been giving myself, even just to need to ten and not twelve hours of sleep a night…  I feel so much more more alive.

And while I hope it lasts, I focusing on enjoying every present moment.

(mandated yoga photo.; please note the irony of this being the image of being back on my feet)

The Only Time I've Used Geometry

So I was in the hospital for two days this week, which is actually the shortest hospital stay I've ever had. Usually I end up there when my intestines become so inflamed that they stop working, and it usually takes a week, sometimes two, to get them back on track (pun intended).

This time, it was just a stomach bug, which causes inflammation in healthier bodies, escalating in mine like a vat of gasoline embracing a match. 

I've dealt with vomit and weird bowel movements for as long as I can remember, so that I can handle....it was the pain that sent me to the ER. Understandably I have a pretty high pain tolerance; most of the time I don't even feel it and can only tell that I'm in pain when I realize that I've turned irrationally irritable or emotional.  So for me to feel so much pain that I can't sleep.....usually means it's severe. 

In this case, "not as bad as it could've been" was the medical consensus. They still found a few things that have made a few of my friends gasp, but apparently that's not too much of a concern when it comes my body. 

***

It's funny. I've had this disease for almost two decades now, and have faced a wide range of emotions regarding others who get sick. For instance, I have a few close friends with bad cases of Celiac Disease, and I'm genuinely jealous, because their bodies can actually heal themselves, whereas mine eventually requires surgery to have the most diseased pieces of me removed. 

And then there are others who've had one medical difficulty, perhaps similar to the "non-concerns" the doctors found in my body this week, and it's their backstory. It's the story they tell on a first date, the defining moment of who they are, something shared as casually as their sign but with the same sock value as what's recently been in our news. 

And it's hard to even associate with people who revere their quick dashes of bad health, when medically I should be able to empathize. But my conditions are finite; hopeless, without cure or resolve; something that will live with me until the day I die, and perhaps even continue in my spawn should I choose to prolong this.

But unlike those who immortalize their medical records, I have chosen a legacy beyond this. 

For them, 

I've learned to repeat to myself that "everyone right now is facing the worst thing they've ever faced."  

Like similar triangles, the size of the situation is irrelevant because the angle from which we face our circumstance is the same. 

And for myself,

I have decided to change my other angles. 

I see them as my outlook, and what I can achieve in spite of the cards I was dealt.

I took a hard situation and polished and sanded it down, smoothing it into something beautiful. 

And the ability to do so is my skill. My backstory. My defining characteristic.  

To be given chaos and still move closer to the equilibrium of the equilateral, to bring myself perpetually closer to the life I want. 

And maybe just maybe, this is a skill that I can inspire in those around me that they can share with those around them, and collectively we can scrap and sand down this Trump polish our country back towards equilibrium and peace. 

 

My Truth To Be Shared

Hello my concerned friends.

I figured I would give you an update on what on earth is happening with me, because a) those of you reading these words right now are kind and loving enough to take time from your life to read about me and mine, and b) because I understand that is an unbelievable act of selflessness.  I thank you for making that choice, and because of it, I feel comfortable sharing some of my truths with you.

So I have Crohn’s disease.  I have had it since I was eight, and I was officially diagnosed when I was twelve.  It’s an autoimmune disease in my digestive track: meaning that my body thinks that it’s its own enemy, and will create great damage anywhere that food touches.  There isn’t a cure for it, only treatments that sometimes work.  When they work it is called remission.  When they stop working, that’s called having a flare.  I am currently having a flare.  And because the body and the mind are so intensely connected, I have different physical and emotional layers to my disease.  And this flare has been especially bad, it would seem, because when one of the layers of my Crohn’s decided to become compromised (which is what happened during my first hospital stay a few weeks ago), my body reacted by compromising a lot of other layers as well.  This resulted in a constant pain, which became it’s own monster; unrelated to the treatment for my Crohn’s.  That’s at least what my doctors and I think as of right now.  So.  We are treating as many of the layers as we can, until the pain can subside enough that I can leave the hospital, return to remission, and then return to my life.

And I’ll be honest, this has been a scary flare.  With my previous flares, there was only one layer to treat.  The answer in the past was once to change my meds; another time to remove my damaged intestines for a fresh start; and another time it was simply to raise the dosage on a medicine that balances the damage that my white blood cells inflict upon me.  

So a few weeks ago when I entered the hospital for the first time, we followed one of these paths: we changed the medicine that I was taking.  The new medicine can take a few weeks to start working, so that could be why I left the hospital still in pain….but the pain that I felt not just continued once I left the hospital, but it grew.  It grew into that monster that I mentioned above…and I couldn’t handle it by myself.  At first it was only when I ate.  I would curl into a ball of hurt, weeping and sweating and shaking from the pain of digestion.  And a few days later, that was just how I always felt, with or without food.

So that’s why I have been in the hospital twice in the last month.  It’s a good thing that I came back, too, because that pain monster was growing stronger than me.  And a few times during this hospital trip, it felt like it took over.  When you can’t trust your body, it’s hard to trust anyone or anything, and it became really hard for me to see some of blessings in my life.  And that’s scary too.  Because that leads friends to turn away from me, and when my friends are my only family…it feels like being orphaned all over again.

Anyway…there was a lot of information in that last paragraph, which could probably fill its own novel, but I’ll just touch on it here to let you know how appreciative I am for those of you continuing to show me support and love…despite the pain monster trying to push you away.  Because at the end of the day, only one of us can survive: pain monster or Heather.  And I will win this battle.

So that’s some of it.  I know there’s still a lot left unanswered, both in this blog post and in my intestines; but ultimately I am happy to be in a place emotionally and physically to feel comfortable sharing this with all of you.  I am an insanely loved human being, and no pain monster can make me believe otherwise.  So at the end of the day, no matter how many IVs or drugs or doctors come in an out of my hospital room, I am very,  VERY lucky to be me.  

Please let me know if there is anything else you are curious about, or if there is any way that I can give back to you.  Because your communal love and support is why I am winning this battle, and why I will make it to remission.