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. 

 

When It Hurts

I am scared. 

I am scared and I am weak. 

I want nothing more than to have someone’s arms around me, someone to hold me when I cry. 

I was surrounded by others in the hospital and yes it was harder in theory then 

but emotionally it’s just as tough now, yet now I am alone.

I still want to be held when I’m afraid,

I want to know I’m not facing this by myself. 

But I feel like I am. 

I watch TV shows where people have their families, 

There to protect them even just by them knowing they’ll never be on their own.

But I am on my own. 

I am crying and there is no one to hold me. 

I know others are there and love and care  

        but always from afar 

It seems that no matter how close I move to them  

        it’s still always me when the tears fall
No matter whom I text or meet or love.  

       it’s always just me. 

All I want is to be in someone’s arms. 

Gently hearing their heart beat against me as I cry, feeling their breath all around me, like a little safe bubble, guarding me as I weep. 

And it’s when I can remember their heart, remember the feeling of the heat coming off on their skin onto mine….that’s when texts or hearing their voice isn’t enough. 

Separated from their embrace, even a loving voice can sting;

(As is most often the case with the those I most want to hold.) 

So tonight I am scared. My treatment failed and I am devastated. Heartbroken.

But no one can come. So I am weak and alone, 

As I try to hold myself as I cry.

I am healing :)

Hello my sweets.

So I’ll update you a bit on my healing.  I feel confident enough to say the word “healing” this time, too.  When they discharged me from my first hospital trip, it felt like all they did was give me a handful of narcotics and wish me luck through the Thanksgiving holiday.  Fast-forward a few days into that week, and with every bite of food, I was curled up in a ball of pain, sweating and shaking and making sounds like a animal trapped in a cage.  Later into on that week, it digressed further, towards me feeling like that constantly, not just with bites of food.  So that was not “healing.”  Thus me heading back to the hospital and staying for another ten days.

But, here we are this time, five days past my second discharge, and I have yet to decline into that pained state.  I am on new medications for my Crohn’s and for my fibromyalgia, the latter of which some doctors attributed to my extreme pain.  So that’s better.  There are more answers.

I did, however, come home to an eviction, though.  Which is just “wonderful.”   I live in a building without the proper housing permits, so without lots of monies for lawyers, it’s not worth fighting the landlord that simply decided she wants the room back, despite my lease.  She also evicted me while knowing I was in the hospital.  It’s strange to see people that had been kind, show their true colors.  Like a wolf turning from a pup into a snarling beast.  It is horrible to know people like that.

So I need to get out of here…. plus losing the feeling of control over my space has been triggering both my PTSD and my fibromyalgia, so it will be healthier for me to move….now it’s just finding where…and how…when I can’t even get up a flight of stairs without help.

Basically there is a LOT on my plate; but I am getting better.  And I can only take things one day at a time.  And the other morning, when I woke up into the sunshine of a new day, and put on a cozy shirt and I looked at myself in the mirror, I saw no IVs, and had fewer bruises; there were no hospital sounds or doctors in sight.  It was just me.  Healthy and smiling.

And my friends, I saw myself as the person I want to be; who I want to grow into.  So as scary as all of this is, I saw a glimpse of the future; and this whole transition is guiding me towards exactly the person I want to become.  And that to me sounds like healing :)

Hospital Insider: The Wonderful Debbie

Everyone, meet Debbie.

She works in the hospital’s kitchen, and you can tell she LOVES her job.  For her, it’s not just a job, but it is miracle work.  By bringing you food, she is bringing you the nourishment of life itself; and she has a palpable pride and gratitude in what she does.  And I can say that she was possibly more saddened than me when I couldn’t eat food.  When she had to take away the food that the kitchen had brought me not seeing the doctor’s orders…it fully broke her heart.

So today, as I brave through trying another meal that hopefully doesn’t bring me pain…I was more eagerly anticipating the return of Debbie than I was the food itself.

She was fighting tears bringing my breakfast to me.  I don’t even know if she knows my name, but she does know how important this meal is.

What she didn’t know, however, is that over the weekend, one of my nurse assistants taught me how to say “thank you” and “see you soon” in Debbie’s native language of Amharic, an Ethiopian language.

She was speechless.  One of those glorious moments when you realize how important and powerful humans are to each other.  When I asked if I could take her picture and post it online she said “YES!” faster than someone being asked out by their celebrity crush.  I asked if she wanted a hug and she squeaked with excitement and told me she loves me.

Humans really are incredible.  Debbie especially.

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.