I Am In Awe

I woke up this morning in awe.

First for good humans.  I started a GoFundMe yesterday (finally acknowledging that I need help with everything that I am facing), and it hasn’t even been 24 hours and I’m almost a third of the way to my goal.  And this is you!  You beautiful and kind souls that are reading my words, caring about my stories and my smiles.  I can’t stop crying happy tears that you are in my life.

I’ve spent so much of my adulthood trying to prove myself as a good human: one that gives more to the world than I take….and for this much kindness to be sent to me, both towards the campaign, but also very much in your words of courage and support….it means I’m doing it.  

Your love means I can be proud of who I have become: because to receive this much warmth…I must be doing something right.  

And I really do love you all so very much.  There have been times when the word “family” made me sad-cry; as if it were a word a language that I wasn’t allowed speak.  Like I was an outsider to the concept of a family, and that I never would achieve actually having one.  

But now, especially after my last hospitalization, with everyone who read my story and reached out and sent their love….when I hear the word “family,” I now think of all of you.  

And so I cry cathartic tears of fulfillment and gratitude, in spite of the hardship that I face.

So thank you for that validation, your love, and granting me the courage to continue.

As for awe number two:

I am exactly where I need to be.  I moved to this city to pursue TV & film, and ultimately my goal of using art to give people hope in being alive.  I have a weird history with this city (one that would require a much longer post), but my mantra has always been not to let my circumstances limit me.  So I came here for a fresh start.  It’s been a crazy start, but in the hospital I got to see the sunrise each morning, and saw it as an opportunity each day to heal and grow closer towards my dreams. 

So when I saw the sunrise this morning, far, far from that tiny hospital window, I saw it as an even greater beginning; one as vast as the pink sky itself.  As if my new life were greeting me today with arms full of love and opportunity.

So my friends, my loves, my family.  I am here.  Full of gratitude for you and where I am today.

And I am SO happy to be alive.  So stay tuned, because I think we’re in for a great ride.

my reaction to the GoFundMe:

and today's sunrise

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 :)

(Almost Officially) Discharge! I'm Going Home.

And so my loves, here we are.

I am going home today and leaving the hospital.

I am not perfect; we don’t know how to fix me; we haven’t even completely relieved my pain.

But.

We have done all that we can here.   

An important friend of mine introduced me to the game Minecraft.  There isn’t necessarily a “correct” way to play the game, with a list of objectives, or a character insisting you follow them….instead you are just thrown into a world….and need to survive.  Or not survive.  You can play against zombies or with no risks at all.  It’s literally anything that you want it to be.  The only requirement is that you play.  And to “play” is follow whatever task you make for yourself.

I like mining for diamonds.  Sometimes this involves following danger to its lair; other times it includes intricate tunneling systems.  And sometimes it’s just luck.  You’ll be searching for some other simple necessity like coal: usually abundant, often connected in rich veins, ready to reap.  And you’ll happen to stumble upon a diamond.  Just sitting there.  Magical and smiling.

Discovering the source of my pain has been like searching for a diamond.  (Or maybe something rarer in Minecraft like an emerald….I don’t know how the statistics play out, but you get the concept.)

And my doctors and I have created intricate tunnels, trying to find this diamond of my pain.  We followed the forged paths to where we have seen diamonds before.  We have trailed danger, knowing that it is often the zombies protecting the treasures….and yet there we did not find the diamond causing my pain.

And so….we continue to play.

We can either change our objective to something easier instead of finding that very specific diamond….or , if it’s really, very important, -which this is to me- we continue our search, but in a new location. 

Because after spending twelve consistent days in the hospital, twenty total this month, looking everywhere for my diamond: I don’t think I am going to find it here.

So I am going to collect the tools that I have harvested while searching.  In Minecraft it’s things like iron and redstone.  In this case, it is my doctors and the medications they’ve recommended. And I will take those tools with me, and use them to further my search.

I will find the diamond that’s causing me so much discomfort that it’s forced me away from my friends, society and home for the last month.  But, like in the search for diamonds in Minecraft, sometimes you need to go rest in the safety and comfort of your home; let the zombies rule the night; and then go searching again when you are more comfortable in the daylight.  I miss my home.  My bed and my little patio.  And maybe the diamond will  be easier to find than I thought.  Maybe I’ll be out, Minecraft-metaphorically harvesting coal, and I’ll happen upon the diamond.  Just sitting there.  Magical and smiling. 

Who  knows?  Plus my co-excavators in this dig, the doctors, are happy with their redstone and iron and don’t want to find my diamond.  They are changing how they want to play; so I will find other diggers to help me.  There are always more people out there, and more tunnels to build in search of my diamond.

So I am going home today.  I am not perfect, not fixed, and still in pain.  But oh my goodness, I am so ready to search for my diamond somewhere else.  Because later today, I will go outside for the first time in 288 hours, and I will feel the sun on my face, no IV tethering me to a wall, and I will feel so free.  

Being here helped me, yes, but I’ve harvested all of the resources that I can.; now it’s  time to incorporate them back into the life that I love.  

And I can’t wait to share those new adventures with you.  So, a few deep breaths and papers to sign, and then here we go!

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.

Still in the hospital, but I have my computer

Helllooooooo!!!!!!


Two of my beautiful friends went to my apartment this afternoon and brought me some of my things; my computer included.  I'm still in the hospital with two IVs currently in my right hand/arm, so communication is still very hard and painful.....BUT I FEEL FREER THAN I HAVE IN DAYS....almost weeks I suppose.

I'm hoping this will allow me to reach out more, and from that feel more like myself again.
It's incredible how much technology can change, even just within your mood.

So although I haven't slept in my bed, nor seen my friends, nor been a normal adulting human at work.....having these keys....it's like I'm back.