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.

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. 

 

Hospital-iversary

This time last year I was in the hospital. I was in so much pain that I would shake and whimper, which disturbed even the friends who'd come to help me through it.

These hospital-iversaries are never fun, because it never feels like something that's behind me. Just because I survived it a year ago, doesn't mean I won't be in the same situation again sometime soon.

I know because I've been here before. Literally, too: I am writing this across the street from the New York ER that I entered two and a half years ago.
I sit at the Mexican restaurant that my visitors would frequent.... I'm never able to eat when I'm in the hospital, and after a week of that, I could always smell the restaurant's scent that permeated into my friends' clothes.

I'd look out of that hospital window on the 8th floor, and watch the little people down below doing their little people things. Picking up after their dogs, wiping the snow off their cars.....menial tasks, but ones I longed for instead of being poked and prodded and pained.

I've always said there's a part of you that has to choose to heal. To be healthier, to leave your sickness behind like it's a terrible boyfriend.

And so here I am, eating the forbidden food if the healthy, one of the little people, doing those little people things; on the eve of once again being trapped in a tower too high up for my hair to reach the ground.

And I don't feel healthier. I've tried to leave my sickness, but today I went to a medical appointment in the same office as oncology.  People who look death in the eyes each day, and today I met their eyes as well. I face pain daily not death, but I recognized their gazes. The feeling that the sickness is in control, we're just passengers praying our genetic and circumstantial seatbelts will be enough to protect us.

I wish I could go one day without having to notice my health. And maybe that's the issue: I no longer believe that to be possible.

So something needs to change. I'm taking care of myself, I don't need to be surrounded my nurses and doctors, I'm eating, I'm doing my little people menial tasks, and still- I want more.
So today I am deciding to find out what that is and go after it.

And that is a decision fitting for the temporal and geographic anniversaries of not feeling in control.
I am choosing to believe again that it's possible.



(Photo of the food to come)

The Most Important Post I'll Write for Awhile

I feel alone in this city, which is ironic as this is the most received I’ve ever felt.  People here don’t compare my passions to their own, feeling as if me loving something unusual to them somehow threatens their own passions.  Instead they very easily accept that what matters to me….matters to me, and more than that, they’re happy someone’s loving it. 

For instance, although hermit crabs are more common as pets on the east coast, fewer people here question how I could love Spencer as much as I do.  

In turn, this also makes change less terrifying.   Last week, for example, I started drawing with our store's iPad Pro, and suddenly coworkers and strangers asked if I was a visual artist; quickly I realized I was the only one laughing at the idea of that being true.

I had changed myself overnight and it was accepted effortlessly.  Back in college, you couldn't change your hair color without worrying about how it would be seen.  So it's odd to me, how in an environment so willing to see you as anything you so choose, that I still feel unhappy.

Perhaps it signals the end of me discovering myself: I found what I wanted and that’s who I am. And if having those choices validated doesn’t satisfy my craving for more, then I’m already onto the next item on the agenda.

When I was a kid I knew the type of person I wanted to be, and it seems I’ve finally grown into the shoes.

So that just leaves walking somewhere.

When  I visited Philly in April, almost a year after being away, I started crying when one of my friends/mentors noted how much I had grown; as much as I wanted that to be true, it was hard to believe. 

Life is monotonous here.  Every day looks the same, feels the same, so it’s only logical to feel like you’re the same, too.

But consider a rock at the edge of the sea, longing to be pulled into the magnificent chaos.  Every waves makes a promise as they come towards it, and every wave breaks its heart when they leave it behind.  It’s tortured in the monotony, with each little splash teasing it with the salty taste of adventure. 

And yet.

Each wave that brushes against it helps it glisten in the sun, tugging away at its imperfections, subtly chiseling it towards is truest form, where it’ll only bear the weight of what defines it the most.  And eventually the day will come when the final wave convinces the rock to let go of the final burden rooting it, and the rock will be carried back with the wave, towards adventure it longs for no longer.

So that’s my final business here.  I have to let go of the final piece keeping me here, so that I can move on to greater things.

And I know what it is, too.

I met a dog in our store the other day, and when I kneeled to pet him, he climbed onto my knees, lifted his front legs and hugged  me.  His owner commented that he likes me and that he’s such a loving dog; and how shocking it is that when she found him, he had been stabbed.

The pup had been recently groomed and when he walked away I could see the scars from his wounds.  And yet if his owner hadn’t told me, I never would’ve known.  That dog was more loving and more forgiving than most people.

A few days ago I tried to find a book I hadn’t finished.  My room is still in the pandemonium of moving five times in a year and no longer owning a bookcase, and so I couldn’t find the book.  But I found another I hadn’t finished and I tossed it into my bag instead.  I take so long to read that I continued where I had left off rather than restarting the book.  The book as a whole takes common children’s stories and breaks down what the symbolism means in adult psycology.  This particular chapter was about “the mistaken zygote,” a.k.a. The Ugly Duckling a.k.a. the trauma we face when we are abused as children and have to grow up too fast in the face of not receiving the unconditional love and care that we need in our developmental years.

I also have been watching The West Wing, and there was an episode where a character works with a psychologist who diagnoses him with PTSD.  The worst the doctor says to him are such: “What we need to get you to do is be able to remember the [traumatic event] without reliving it, and you have been reliving it.”

The book, Women Who Run with the Wolves, phrases it incredibly as well: 

“There is another issue to be dealt with.  Mistaken Zygotes learn to be survivors.  It is touch to spend years among those who cannot help you flourish.  Being able to say one is a survivor is an accomplishment…And yet there comes a time in the individuation process where the threat or trauma has significantly past.  Then is the time to go onto the next stage of survivorship, to healing and thriving.”

Now I’d be too nervous to say the threat has past, but I met a customer who understood quite a lot of this and confidently told me  I didn’t need a restraining order.      I’ve been here for a year and was only stalked once.  It triggers me, I’m still coping with the trauma, but I am safe.  Definitely safer than I was then.

The book continues: “One can take so much pride in being a survivor that it becomes a hazard to further creative development.”  For me, I think it’s that I went so many years on my own, people not knowing how hard my life was, before and after the abuse, that saying I survived validated the struggle I still felt I needed to prove.  

But,  “at some point, allying with it exclusively begins to inhibit new development…Liken it to a tough little plant that managed — without water, sunlight, nutrients — to sen out a brave and ornery leave anyway.  In spite of it all.  But thriving means, now that the bad times are behind, to put ourselves into occasions of the lush, the nutritive, the light, and there to flourish.”

That’s greater than “making survivorship the centerpiece of one’s life.”

That dog did it.  He is a creature made entirely of love, and still he was betrayed and almost killed by those he had chosen.  Miraculously he survived, but he didn’t remain in his abused state, bowing his head to those he feared would hurt him again.  He forgave and trusted and let go of the burdens rooting him to the shore — and now is as happy as he could be.

That’s my next step.  I didn’t just accidentally bump into all of these themes in the span of a week.  They’re the waves that have chosen to come towards me, highlighting that which I’m gripping to tightly, which in turn is gripping tightly onto me.  They splash me with the importance and safety of letting it go.  Ultimately, I’d rather say I’m happy than say I’m a survivor.  So if I can change myself overnight, tomorrow I will wake up in the direction of health, moving  a step closer towards being a thriving individual.

Heather's Guide to the Colonoscopy:

What to do when you want to fu*k up your intestines:

What you'll need:

• 1 kit: There are a bunch of these colonoscopy preps and they all have different instructions; read yours closely, and don't worry: all of them suck.  Some involve chugging a gallon of the stuff in one lengthy sitting (this is the cheapest kind), whereas some just have you drink 16 ounces the night before and the morning of.  Whichever you have, come up with a reason why you're lucky to have this one and not the alternative.  I like getting citrus ones, but you're likely not going to have a flavor choice.  Again come up with a reason why your flavor doesn't suck as much as the alternative.
• Gatorade: get more than these than you think.  It's a chance to try new flavors or to bask in the comfort of your favorites (just make sure none are red or purple).  You're gonna need those electrolytes once things get going.  Have at least three on hand.  
• A special drink but not your favorite: have this nearby as a happy alternative to your gross potion.  Have it as a chaser for when you chug the gross stuff.  It will distract you from the aftertaste of the potion.  Buuut just in case some sneaks in, make sure to have your second-favorite drink.  (You don't want the associations of the gross to ruin your favorite drink.)
• The softest toilet paper you can find: treat your bum like it's royalty.  This is it's night to shine and it deserves only the best.  
• Wet wipes for your bum (at least two packages): preferably ones with aloe in them.  It's cooling and healing, and after things get going, even the softest toilet paper will feel like sandpaper.  Again, you want lots of options because you definitely won't be going out to get them anytime soon.
• Comfy clothes: Things that make you feel great, but not ones that you love-love, as you very well might throw up in these clothes.  I'd also recommend tank top with a blanket nearby, rather than a constraining long sleeved shirt.  But you do comfy you.  Oh!  Also make sure you feel comfortable throwing out your undies.
• Heating Pads are always welcome.  Always.
• Activities: have as many as possible.  Examples include: a coloring book, fancy new nail polish, face masks, Mad Libs, a TV show you're usually too embarrassed to watch, trashy magazines -- this is your opportunity to spoil yourself!  This sucks and is awful.  You've been feeling like crap and responsibly telling your doctor about it, and so now they're making you volunteer to make your body explode from both ends, all for a crummy procedure you'd prefer not to do anyway.....the least you can do is let yourself take the day off and treat yourself to something wonderful that you normally wouldn't let yourself have.  
• After Procedure Treat: I know you're hungry.  I know you haven't eaten in a day.  But then again, you know that I've gone two weeks without anything in my stomach, having nutrition pumped into my bloodstream through a tube in my arm.  So when I say you can make it through the next twelve hours, you better believe it.  And in the meantime, be excited that you have a little package of Hostess powdered donuts in your purse for when you wake up after tomorrow's procedure.  The hardest part of hunger is not knowing when you will eat next, and you do.  It's going to be okay.

And lastly some Rules:

The "Kool Aid"

1. Don't mix it with anything. You'll never be able to unassociate the taste of mixer with the taste of this grossness.
2. Chug it.  Yup. Why would you want to take twenty sips with twenty aftertastes when you can deal with it only once?  But don't chug it like water after going for a run for the first time in two years....think of it like alcohol.  If you chug too fast, you very well might throw up....because yup, you might.  So chug with big sips, not gulps, and power through.
3. Again, use that chaser.  I've done this so many times that I'm not going to defend myself.  I'm right.  Trust me.
4. Once you start, I'd say you have about 15-25 minutes before you feel it start to work.  Take this time to get comfy: situate those pillows, grab that heating pad, and queue up the Netflix because you won't be leaving the house again until morning.

The Procedure

1. Honestly, hon, this is the easy part.  You've done your job, this is when the doctor does theirs.  Making it to the colonoscopy is the tough end to this, and you've done it so well.  So relax.
2. Wiggle your toes when they put in your IV.  It gets your blood pumping and distracts you.
3. If you feel comfortable with your doctor, ask if they can use some lidocaine to numb the vein first.  It pinches a bit, but makes the process smoother.
4. IVs suck, they just do.  They always tell me that I can move my arm because I so noticeably hold it stiff and away from me like it's no longer my limb and instead a alien appendage that's attached itself to me.  It'll be out soon.  At least you're not keeping the IV in for a week.
5. Aaanndd relax.  They may even give you a "cocktail" to help you relax.  Also think about it.  You're laying down with a pillow, in front of a bunch of strangers, about to take a nap in front of them, and that's socially acceptable.  How cool is that?  I wish whenever we have a store meeting at work that I could lay down in the center of the room and nap in front of everyone.  That'd be awesome!  Alas that's not the case but this is.
6. Lastly, countdown from ten and think about those donuts.

Today Was Actually a Good Day

I had the day off today.  I got to sleep in for an adequate amount of time, but didn't have to choose between rest and being alive (my body wants to sleep 16 hours a day and that's just not possible to do while also having time to be a human).

I went to get two of my nails fixed (somehow those broke off) and the kind guy at MJNails (go there!) did it for free because I had been there just last week.  And when I in a panic mentioned that I didn't have any cash on me for a tip, he very simply said it's fine and next time.  It seemed he honestly hadn't thought of it, he really was just being giving.

Moving on to other kind souls, I went to a doctor's where I haven't had the time to go recently.  It's a place that does acupuncture, massage and chiro all in the same office, so there are a lot of friendly people who work there, and that's always part of the treat.  It's been about a month since I had the time and energy for an appointment and I'm grateful I did.

After that I headed over to a pet store to get just a single lightbulb for Spencer.....and of course I purchased $35 worth of hermit crab treats.  It only cost me $23, however, because the kind fella to whom I asked sooo many many crab questions and told even more stories - found a way to give me a major discount.  He knew so little of my story, and still decided to help :) He also could tell that I'm a writer (lately everyone can tell I'm an artist and it's very reaffirming) and also...when I was inquiring about the food they feed their hermit crabs and sheepishly asked if I could have a sample to see if Spence likes it....he came out with a big tub of their food and just GAVE IT TO ME.

I'm just in awe.  Good people.  There are good people in the world who want to help make life easier.
This is the world I wanted.
I grew up with an angry woman.  She was mean to everyone but blamed it on everyone else being awful.  I remember the first time I went somewhere alone and how easy it was to have kind interactions when you are kind to everyone.  I decided then that that's who I would be, and that that's the kind of world I want to live in.

And at least for this one day, I lived in that harmonious world.

I also had to take an über back to get home safely, and my driver was a clever and worldly man from Germany, and it was so incredible to talk about Europe and share what I learned from being abroad and hearing a native's opinion on some of my observations.  I miss traveling and different cultures and people so different that I can't even imagine something as simple as their daily routines.....and it was such a treat to end the night with a reminder of how important that is to me and a taste of what I've been missing.

So I would call that a good day.  (....finally)

I No Longer Believe In What I Want

I want a family more than anything.

People or even one person who’s literally or even figuratively by my side forever, supporting me and what I pursue, loving me no matter how I change throughout my life.  Not trying to control or alter that growth, but watching me choose, and coming along wherever those choices take me.  There during the hard times, to remind me of how far I’ve come; and they know it too, because they’ve seen it with their own eyes…..

I no longer believe this is possible for me.

There absolutely are people whom I love that love me too, and because of what they have done, whether it was sending me a Facebook message or taking me in: I wouldn’t be here without them.

I am not writing this to discredit anything that others have done for me — in fact, those that have helped are all the more incredible, as their acts of love weren’t due to familial obligation — I just need to change my mindset; what it is that I wish for.

For a long time, I was hoping someone would make me a part of their family.  When I moved out here, I thought that was the case, that I was being taken in by a family, who had referred to me as their fourth daughter.  They would let their children stay with them as long as they needed, continuing to love them even after they moved out. I assumed that the same offer was being extended to me.  It wasn’t; I was asked to leave, and haven’t heard from them since.

I can’t be upset, because taking me in at all was kind.  In that time, I was able to find my footing in a new city, I was well fed, and it was a brief period where I wasn’t alone.  I am grateful.

My mistake was in assuming.  Assuming how long I could stay, and that calling me their forth daughter meant their love would last.  I assumed I had found my family.  And it was that assumption that made it hurt.

I made the mistake, once again, of thinking a family had decided to keep me.   I need to let that go.  I can still be grateful for any piece of love, without hoping it’ll come again.

It’s not like anyone promised to love me forever.

Well.

A few did.  Three promised they were my family.  To be here for the ride, never letting go.

This year they all let go.  And they were joined by others; I’ve lost about a person a week since I was in the hospital. And I can’t feel betrayed, as they were kind enough to shared their love with me at one point.

Still I was crushed.  I still am. 

And in order to prevent hurting again as much as I have this year, I have to stop trying to fit into people’s families, or taking people in as my own.  I can still love and be loved, but I can’t rely on that love always being here.

So no more wishing for a family, or a guardian angel to come along and magically make my life easier.  I’ve been on my own for six years now; and I need to accept that it isn’t going to change.  Just like my Crohn’s Disease isn’t going to go away, my familial circumstances aren’t either.  I have to accept that this battle is mine to fight alone, and if I fail, it’s only on me to fix it.

In some ways this will make me appreciate love even more. When I stumble upon help or love I’ll be endlessly grateful; but I won’t be shocked when that love moves on.  I won’t feel as crushed as I was when I lost my family.

Fortunately, it’ll be a long time before I see someone that way again.

Headed Towards Happiness

          So I’m finally, finally back at work!  And I’m so happy.  Making money means I’ll be able to ask for less from those around me.

          In the last four months, I’ve relied on others more than I have in my entire life.  A new friend recently asked if I’m looking for a knight to come into my life to slay all of my problems; and I immediately responded that I can conquer them all on my own.

          I may have been physically weak the last few months, needing a shoulder to help me up a flight of stairs, or friends to help me to doctor appointments or grocery stores, but I never stopped being me.  The me that remembers stepping on a bus and leaving my abusive environment without knowing where to sleep the next night.  The me that traveled to a different country without knowing the language or a single person there.  The me that worked four jobs while being a full-time student at a prestigious university.  So yes, I had a partner before, but I never relied on him to fight my demons on my behalf.  

          I’m grateful, of course, for those that have helped me and given me strength, but I would have needed a hell of a lot more if I expected someone to do my healing for me.  I have fought fiercely and tenaciously every day, to get out of bed and move forward with my life.  Once you decide that you are sick, it exponentially affects the time you need to heal.  I have been sick, hospitalized, fatigued beyond imagination, even in agony from pain: but I never let my disease win.  My mantra in my adult life has been not to let my circumstances limit me.    Yes, the can change the quality of the road ahead; while some may have a smoothly paved path, I have potholes and, well, basically rocks being chucked at me as I move ahead, but I’m always moving forward.  Always.

          And now that I am back at work, I’ll be able to move forward at faster pace.  Plus I’m very close to healing not needing to be my first priority.  Instead, I am really interested in learning to be as happy as possible with this path that I am on; potholes and rocks included.  I’ll keep you posted on how I learn to create the happier days ahead.

           I’m still going to need people in my life, but only to love, not for favors.  I am in control again.

(a photo from a happier day, reminding me of the ones ahead)

What Questions Do You Have?

Through my decade of having an autoimmune disease, I've learned that I can empathize with a lot. There are hundreds of stories of guilt and healing, of preservation and persistence, of struggle and resolution that I could tell - so what would you like to hear?  What advice do you need?

Send me an email to heatherarubarb@gmail.com and I'll answer your questions on my blog. 

P.S. That's not my primary email, so if you would like to be virtual penpals make sure to specify that in your email.  

My Most Recent Health Update - As Seen On My GoFundMe Campaign

Here is my most recent update. If you would like to contribute, and oh my goodness will it help, here's the link for the campaign: www.gofundme.com/healingwithheather

"Today I got my third nerve block!  The doctors STILL have no idea what's causing my constant pain, but this has so far been the only treatment that helps lessen it.  Of course it's not a perfect solution; its kind of like plugging a leak in a boat, but really needing to get back to shore.....but for now, I'll take whatever keeps me from drowning.  Plus, a nerve block is the only thing that has allowed me to eat food, and after not eating for two and a half months, I assure you that food is the greatest of all things :)

The included photo is me before the procedure, the IV, me after the procedure, and an example of the amazing food that I can now eat. 

Also I went to mention a little bit about invisible illnesses.  My before picture looks Facebook-profile worthy, but what you don't see is how much effort it took to shower this morning, when every part of me was almost too sore and pained to just get out of bed.  So just because I look like myself and "healthy," that doesn't mean that I am.  That's what an invisible illness is. 

Even directly after the procedure, when I was still loopy from the anesthesia, a woman angrily forced me to give up my seat for her, assuming that I didn't have my own health problems simply because of the way that I look.  I was too tired and weak to fight with her, and gave up my seat, and then she told me that I should smile....... Clearly not everyone is very educated on or open to others' struggles, so if you glean anything from this update, I hope it's considering the pain you can't see, and to value and respect it as much as you would more obvious injuries, such as someone with crutches or with a cast. 

But of course this won't me a stretch for you; you are the good ones, as you've already gone of your way to help me, showing that you understand.

The procedure was $30, and then I spent $70 on medicine, and that's $100 I didn't have without your help. Thank you again. You all have made my healing possible. I really couldn't have done this without you."

An Aside: What's On My Plate

In the spirit of sharing my story and what I’m facing each day, I figure I’ll write a bit more about some of the obscure things that are on my plate.  We know the meat and potatoes that are on there (housing and health) but I also have some weird side dishes.  Let’s discuss three of them today. I think this will be my new series, so prepare yourself for an onslaught of sides. 

(Also I'm listing each “side” in all caps, so please say each of them aloud to yourself in a triumphant voice.  It adds importance)

~~~~~

NAPS.

I keep falling asleep.  The meds I’m on knock me out so hard and so suddenly that as I write this I’ve been falling asleep while sitting up.  But I don’t want to take naps all the time (because thenI feel like I’m in preschool), so I end up pushing myself to stay awake….which then makes me even sleepier….and is clearly not the perfect solution.  It’s a sleepy work in progress (which will get easier when my meds change soon).

I’ve also so far shied away from caffeine….but maybe by then I will be able to have the glorious elixir of life (coffee) once again.

Until then, I’ll try to embrace my existence as the dormouse from Alice in Wonderland.

EDIT: since writing this, I had a “taste” of decaf coffee!  Still not my “usual” of coffees larger than my face, but I’ll get there.  I believe in myself.

~~~~

Next.

STAIRS.

They are the bane of my existence.

Every step feels like rock-climbing.  I’m constantly uncertain of my footing, always preparing for how to catch myself should I begin to fall.  I have stairs going up to my apartment currently, and they are the worst part of my day.  I have tried railings, stepping one foot at a time, using a friend’s arm….and honestly there is only one thing that works: there is a glorious friend in my life that gives me piggy-back-rides.

This is the perfect solution to stairs and I owe this friend my sanity.  Being angered by angled pieces of concrete is not a sign of emotional balance, and thus the tranquility that the piggy-back-rides provide me is one to be admired by monks.  Om.

~~~~

THE WAY SOCIETY VIEWS THE SICK

Now this is less of a side dish and more the weird and strong smelling main course, which someone brings to a potluck that everyone is a little too afraid to taste.

So I’ll touch on it gently.

We live in a world where healing is considered weakness.  A friend injured herself and asked on facebook if anyone had extra crutches for “this pathetic gimp.”  Now I’m not going to speak at length about how offensive the word “gimp" is, nor dive into the fact that she was insulting more people than herself by using the derogative term…. Instead, I’ll simply comment on her use of the word “pathetic.”  By calling herself a “gimp” it’s clear that she didn’t respect herself, or anyone who needs the aid of crutches to get around; but, as if that wasn’t enough, she further qualified the offensive noun with the word “pathetic.”  Pathetic is someone that is sad and evokes pity, but in a way that you feel gross about it.  Pathetic isn’t the homeless person pass you wish you could give a dollar to; pathetic is the person that spits on the homeless instead of feeling sympathy.  Pathetic is someone that should know better, try harder, be more than they are failing to accomplish.

And she thought her injury made her pathetic.  That she should have known better, tried harder, been more than she was failing to accomplish….all because of an injury that I assume was out of her control.

I think she should have praised herself.  Rewarded herself for the bravery that it takes to ask for help when you need it.  I think she deserved kindness from everyone but mostly herself, for knowing not to push herself beyond her injury, thus allowing her body to heal at its own pace with the aid of crutches.

I know healing to be something that deserves that much love, but unfortunately society tends to agree with this friend of mine.  The world arounds us prefers the word “sickness” over “healing,” like its some disfiguration you are responsible for.  I have been forced to feel the wrath of “being sick” for almost my entire life; but again, I prefer the word healing.  It implies a process that lasts forever; of finding balance physically and emotionally.  I am proud to be healing.  I am not ashamed of a sickness.  Though some days I wish society could be a little more sympathetic; I don’t want to have to worry about my friends seeing me as “pathetic” for something that is out of my control, which I am doing my best to overcome.

~~~~

So those are today's side dishes: naps, stairs and a rant on society.  As far as what's on my plate, it's  definitely a feast, so I'll leave you here to digest.

How Hope Wins: Life is Like Hopscotch

So unsurprisingly, these last few days I’ve been thinking a lot about the importance of hope.

It’s interesting, hope works a lot like my pain management does.  To explain, I’ll clarify a little about my meds: Right now I’m on a narcotic that I can take every 4 hours.  One way to do this, would be to wait until I am in pain, and then to take the pill.  But then so much of the drug is then committed towards getting me out of the bad pain and back towards neutral…..this is sounding unnecessarily complex.

Hmm…Pretend it’s hopscotch.  Where I’m trying to hop towards being pain-free, and I have the pain monster behind me.  So the drug can help me move 4 hops forward, but the pain has already made me move backwards three.  So when I take the medicine, I really am only moving forward one square towards being pain-free!  Thus, the other way to try to manage pain is to take the medicine every 4 hours, not waiting for the pain to join the hopscotch game.  That way I can move forward 4 hops every time I take it, and be closer to feeling better.

(Now, this is a hopscotch game to play with doctors, of course, because narcotics are a little more complex and potentially addictive than childhood games, but as long as that is known, the metaphor holds.)  (….we can pretend it’s a game of hopscotch over a lava pit and my doctors are my hopping-coaches.)

So.  I have realized that hope works like this too.  It’s a hopscotch game headed towards happiness, with the dark feelings behind me.  If I try to think of something positive, I will move forward three squares towards happiness.  But if I wait for the sadness to take over and pull me back 6 hops….then I’m barely moving forward.  I’m still hopping three steps towards happiness, but I’ve been pulled so far back that it may not even feel like progress.

Thus I have learned that happiness is something that must be managed like pain: with a daily effort towards moving forward; otherwise it’ll feel like the darkness has taken over in my game of hopscotch.  And it’s important to feel like I’m always moving forward; that I have that control over my own happiness.

In my last post, circumstances had allowed the sadness to pull me so far back that I felt like I was losing my hopscotch game towards happiness.  Generally, I would hide in moments like this, not publish them….but I am committed towards the honesty of where I am in my healing process.  So I wrote about it.

But.  Just because I was losing the game then, doesn’t mean I’m not doing everything I can now to hop towards happiness.

It’s just going to take a little more daily effort, I think…..which to me sounds like a lovely project.   And I have a few ideas a-brewin’ :)

In the meantime…why is all of this relevant?  I have another nerve block scheduled for today.

This is the treatment that was the *first thing* to help me in months, which then failed after three days.  So as you can imagine, it was a ton of excited hops forward, only to be pulled even farther back by the fear that the pain monster is always going to win.

And yet I am nevertheless trying again today.  It’s a gamble and I’m wagering my physical and emotional states….but again, I need to feel like I am in control over my own hope and happiness.

So even if the treatment fails again, three days of relief where I feel released from the clutches of pain and disease…..perhaps this is such a victory that the elation of it can bring me residual hope, even when the treatment begins to fade.

Because even though I’ve spoken of two hopscotch games, the physical one of hopping from pain towards healing, and the emotional one of moving from sadness to happiness…they’re really both the same game, with  the bad behind me and the good in front of me.

And I’m still learning all the rules…..but I am thinking that I can choose the number of hops I take.  I think I can limit how far back pain pulls me, and I think I can allow my own victories to boost me even further forward.

So in addition to the nerve block, today I’m also trying a bad-block.  And I need hope to win.

This is my new goal.

Wish me luck today ;)

(above are four moments where hope won during hopscotch.  The first time I got to wear my clothes after 10 days in hospital gowns; a puppy that decided she loves me; a security guard that made me feel confident in a wheelchair; and a sparkly reminder that everything is going to be great.)

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.

Things That Make Me Smile

A little insight into my world:

Hey loves!  I know there hasn’t been a  lot of news from my end: and sadly that’s because there hasn’t been much change.  I still can’t eat solid foods without being in excruciating pain, and the “full liquids” that I manage to slurp which barely keep any meat on my bones, still cause me pain or at least a very intense nap session…. I’m also learning my body all over again with physical limitations so as to avoid over exhausting myself (hello fibromyalgia, nice to see you so complicated), and thus I haven’t been able to move/pack/find a new place to live.

YET.

It’s all a lot but I’m doing all that I can each day.  And all of that will ultimately happen, hopefully with health news as well.  I’m still seeing close to five doctors a week with a few medical tests thrown in, and I’m hoping that one of those will lead to precisely what’s been going on.

BUT in the meantime, what matters is getting out of bed each day with enthusiasm and the sunshine-attitude that makes me…well, me.

So here’s a little insight into the Things That Make Me Smile.

My Meals

So, only being able to drink things sounds like it can be quite drab, but give it a week and suddenly juices can be divine.  My most recent obsession: white grape juice :) Yum!  In terms of nutrients, however, I try to calorie-pack with puddings and ensures, and nutrient-scrunch with cold pressed juices.  

The attempt at nutrition despite my diet is something I never would have been able to afford with others’ generosity and my GoFundMe campaign, so THANK YOU ALL.  I and my body appreciate it.

Hard Candy and Teas

I can also have candies and teas….and finding ones that taste like real foods are always a wonderful win!  I’m still very partial to Werther’s, though, I’m definitely an old person at heart.

Pampering

I’ve wanted to write many a post on how important pampering has become to me.  It’s hard with so little energy to take care of myself, and yet with no control over my insides, being able to maintain my outsides is incredibly satisfying.  I’ve loved having my short hair, which I can style easily and happily with a little product and a headband.  And when you feel like hell, looking put together is the hugest of compliments.  So from lotions to comfy sweaters, looking like me has really helped me feel like “me,” too.  Let’s call it my healthy glow : )

Little Reminders of Those That I Love

I carry stuffed animals on me regularly now, and am very proud of it too!  Whether it’s my Pushineenicorn that is perfect for comforting my tummy from abrasive seatbelts, to little pocket friends that I can hold during a blood test, these little buddies have really helped remind me of their human counterparts.

Not feeling alone is something essential to the healing process, and I, again, feel incredibly lucky for those in my life.  I am a grateful flower.

So that’s some of my world!  Here are a few picks of my most recent haul.  I had to keep myself from using all my energy jumping up and down with excitement!

Health & Emotions: "I hope that by expressing myself, I can connect to those that understand the unusual"

Hey loves.

I wish I had better news for my update to you, but I’m still struggling with everything.  

Health-wise, my diet was changed last week back to solid foods, but the pain I get when eating is the same as it was before all of my hospitalizations.  My doctors are confused and I am, too.  I should be better by now.

 And it’s hard, my friends, to get out of bed each morning and take my meds when I feel like nothing is really helping.  I still do it because I am an intelligent individual and know how important it is, but emotionally it gets harder each day.  Plus I still need to find a place to live in the next fifteen days and I don’t know how I’m going to balance all of this when I have to go back to work. 

This is all just a lot for just me.

To help keep my spirits up, I’ve been trying to do social things every few days.  I went to a party, for instance, to see some of the people that I miss and had welcomed into my world a few months ago.  It was fun and full of some incredible friends, but it was also really hard.  I didn’t feel strong enough to stand for a lot of the party, and I was in pain while trying to enjoy myself and seem “normal.”  Also not everyone there knew how hard things have been, which is fine and totally their choice, but made it a bit challenging.  

For example, someone told me that I look skinny and meant it as a compliment…..but I’m skinny because I’ve been in too much pain to eat and so I’ve been malnourished for the last month and a half.  It has not been “good” weight that I’ve lost; I’ve felt what it is to stave and to feel my body deteriorate….so all of that adds a different connotation to “skinny” than what is normal and expected.  And the sweet person simply meant to compliment me.  So I thanked her with a genuine smile, but it reminded me of how different this experience has been from what people are used to.  

Reintegrating into the “normal” world is going to continue to be hard, I think.  

But writing about it helps, and I am definitely not the first person to feel this way.  So I hope that by expressing myself, I can connect to those that understand the unusual, and at the very least, it will allow us to feel together in this and not alone.

And I’ve definitely felt that connection throughout this experience.  Sharing my story has been powerful beyond what I had imagined.  I’ve been floored me how empathetic people are, and willing to reach out.  And I’ve discovered this power of human connection in all scales of sharing my story.  

From the GoFundMe campaign, where I finally asked for help and in return have been able actually take care of myself without having to stress; to even something as simple posting a picture yesterday of a syringe.  See, yesterday I began a medicine that requires injecting myself every two weeks and so I posted a picture of the syringe (which I hope will eventually not scare me and make me cry).  And I had about four people all reach out with their empathy and tips for their own experiences with syringes.  People really are amazing.  Here is this scary new thing, and I immediately had a support team willing to be there for me.

So although I don’t have huge news on health progress, and yes, it still is a battle each day, I definitely feel like I have troops beside me in this.  Not everyone needs to read these words, nor do they have to even care about what my life has been like these last two months (or 23 years)…..but it’s those that do care, that are reading and reaching, who choose to be my support, that allow me to get out of bed each day and continue to fight this battle.

So to those of you that are my troops: I can’t adequately express how important you are.  

You are my courage, my wisdom, and the voice telling me I will survive this battle.  And for that, and everything, I can’t thank you enough.

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 :)

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.

Soap+Stone Week 2 Reflection!

The Power of Forgiveness