Feeling Fabulous

I made a few goals at the start of the year.  Thanks to my job where I work with neuroscientists (can I get a “what what”), I am both fortunately and unfortunately aware of why New Year’s Resolutions tend not to work.  It mostly falls upon failure to reinforce the goal as a habit.  Thus a routine is necessary to build and follow.  For some, it’s throwing away one thing a day so as to gradually create a home that actually feels like an escape. 
For that journey check out my amazing best friend’s blog!

My goal, no surprise here, is a bit complicated (convoluted) and hard to express simply (totally a good foundation for a habit…), and miraculously I have found a routine that works that I think is worth sharing.

It somehow manages to tick off feeling healthier, actually attempting some exercise, saving money, writing more, starting the mornings in a quieter space, feeling more organized in my room, and like I have an equal share to the common areas in my apartment.  It does all of that…and it started with an app.

Fabulous, a beautifully designed app and support system, guides you on a journey to be "your best fabulous self."  It starts simply, just drinking water each morning, and gives tips on setting up the night before so as to ensure your success.  Fast forward a few weeks, and my morning routine now consists of drinking water, eating a healthy breakfast, and doing some light exercise.  The app does an amazing job of working each of these in gradually, and celebrating each of your little victories.  So that ticks off feeling healthier, attempting exercise, and saving money (as I am preparing more food rather than buying it).  It's amazing how looking at these goals as smaller actions accomplished one day at a time really does make the longterm habit much more attainable.

The last piece, is my own ingenuity: I've been eating more meals in the common area.  I tend to disappear into my room and eat most of my meals in bed.  As a millennial, my natural habitat is an "internest," but it makes me feel a little like a slob.  Plus I tend to hoard my dishes, and then feel awful about having them, which debilitates me against, you know, actually taking them to a sink and cleaning them...thus creating anxiety around each meal I eat in my room.  Thus by eating more meals in the kitchen, I clean my plate as soon as I finish, and I feel a bit more put together than I would eating in my room.  Which, in turn, is more organized without dirty dishes everywhere, and, oh right that other goal: I feel more comfortable taking space in the common areas.  Being in them is now quite literally built into my morning routine.

Then there is writing.  Hello.  I am writing this currently.  I am sitting at the kitchen table, eating my breakfast of toast, apples, peanut butter, and carrot juice, eager to start my day by going for a walk in the snow.  THE SNOW.  (Side note: realizing walks count as exercise, that I don't have to try to run five miles, was game changing.)  I simply bring my computer or a notebook with me when I eat breakfast, which replaces watching Netflix immediately and accomplishes that last goal, of beginning the day in a quieter space.

It's amazing that in just a few weeks I am already building habits that bring me closer to how I want to feel.  And that simply eating breakfast downstairs accomplishes so much.

The last trick to goals is accountability, so I promise to keep you posted!

[my eagerness to go for a walk could also be due to the fact that I now have a unicorn umbrella]

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. 

 

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)

Medical Networking....Because Being Sick Is Not Enough

Starting over in a new city can be hard when it comes to friends, a routine, feeling like you have a home..... but the hardest way to start over is medically.

To be bluntly honest, The easiest way is going through the ER.  I have so many different conditions, that no single doctor is qualified to attend to all of my various health needs.  So rather than finding a doctor to refer me to the other doctors, checking insurance coverage, coordinating appointments for at least four different docs, usually months in advance, and having to get to and keep track of all of these appointments when I'm already weakened from pain.... the ER has them all available and in network, and they all come to my side when I need them.

I'm need another nerve block.
Fortunately/unfortunately I've done the ER routine in New York City a few years ago, so I still have my Crohn's doctor.  Unfortunately, however, he knows no one who performs nerve blocks and doesn't know anything about the condition my LA pain management doctor identified and was treating....

So here I am, proactive enough to know what I need and when....and here are all the steps it took to maybe possible have a lead:

1.  Called old doctor (if I didn't have him, I'd have to find a primary care to refer me to him, putting me here about two weeks later, if we were moving efficiently)
2. He knows an anesthesiologist.
3. Googled that doctors name.
4. Called the wrong medical practice and got another number that might work for him.
5. Called the right one and gave them insurance information.
6. They checked my benefits and called me back. We scheduled an appointment.
7. And so now I'll be seeing him, in hopes that he performs nerve blocks and if not can link me to someone who does.

He is also out of network, which for now is covered, but come January 1st, I won't be able to see him until I've payed the copay equivalent of $5,000 for his services to then be at least partially covered. Otherwise he'll own every I have.

Years.
Years of self research to know my body this well, but what's taken even longer is knowing how to work the system. Not work it even, just survive in it. I'd be dead if I hadn't. Homeless, in pain, unable to get the care I need, in debt, and eventually dying from lack of medication.

I am so thankful to be working through this when I'm at least somewhat stronger physically than I was even a few months ago.

I also have to call three different medical offices to get copies of records sent to these new doctors. You know, because having the conditions aren't bad enough....but I need to have other doctors to prove that I have them, otherwise I'll be treated as a junky and not given even a milligram of help or respect.

This is why it's easier waiting until my body starts ripping itself into pieces and going to the ER.
Somehow that is easier than this.

I really hope this doesn't start to consume my life again.....I just started feeling like a person.

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.

Things Are Moving, and Hopefully Forward:

The Move

As far as my move goes, I had an lovely interview today for the job I want in Philly, and next week I’m having dinner with the beautiful soul who wants to drive Spencer and I across the country.  

My little one molted the last time he was on a train and changed shells the last time he was in a car; so I think he’ll enjoy the trip: perhaps traveling reminds him of the sea.

Also his birthday is coming up at the end of June and I can’t wait to shower him with even more presents.  There are a lot of people that I love whom I’ve lost this year, and yet this little hermit crab has held on unwaveringly.  He absolutely is one of the best things in my life right now.

The Me

Speaking of which, I’m a little lost.  I’ve learned that I’m at my happiest when I have someone to love, and with the absence of many of those that I thought of as family, I’ve started to lose hope in having people to truly love; and in tandem, ever being really happy.

I remember when I was at my happiest, and that’s not only lost in the past, but it’s not even remotely dreamed of by the person with whom I shared those memories.

So it’s time for new memories, and perhaps some changes in what I hope for.

I need a new reason to wake up to each morning.

The Health

And speaking of mornings, my health is a bit finicky.

My body tends to do what it wants.  No matter how early I go to bed or how many alarms I set, my body has been forcing me to sleep an average of 12 hours a night.  Add in the 4 hour-commute to and from work, plus my 9 hour shifts, I now have -1 hours for myself each day (and yes I tend to get ready for work on my bus ride there…).  Again, it’s time for a change.

ALSO

I realize I have never posted about the current theory of what’s wrong with me.  Perhaps that because I’ve been getting used to it.  It's a bit long, so I've created a separate post for it, which you can find by clicking on this blurry but happy photo of Spencer and I:

Back at Work, And Trying to Celebrate

Hey loves!
I haven't written in a little while, probably because I'm still trying to figure out how I feel.  I'm back at work for the first time since my flare started three months ago, and it's been really tough adjustment.

To be perfectly honest, I don't feel ready to be back, but financially I need to be working, so back I am.   I'm better than I was even a month ago, but I'm still not feeling back to normal and I'm struggling physically and emotionally.  For instance, someone bumped into me yesterday and it winded me so much that I had to sit down after it happened, which was frustrating after a such a simple little bump.
Additionally, it was discouraging the other day when someone complained to a manager that I was using my phone, making the assumption that I wasn't using it for something recreational and not for work.  That's not who I am.  Just getting to work each day requires so much commitment and effort, that I'm not going to waste anyone's time once I'm there.  I was using my phone to take notes as I was learning new material.  I would have told them this if they had come to me about it, but instead they assumed they knew me and went straight to a manager to get me in trouble.  It's these assumptions that I'm really sensitive to right now, after facing something so difficult that no one really understands.
Even a few months ago, when I ventured to a work party, something scary emotionally as this was the first time seeing everyone since the hospital and scary physical because I was in pain and still weighted so little that a gust of wind could blow me over....there, in this vulnerable state, a coworker started badmouthing me behind my back.  He was making fun of my energy or voice or something.  After everything I had faced, he just needed to talk to me and I would share with him the struggle and agony that I have faced, and yet he assumed he understood and decided he was in a position to judge.

Of course that person and the cellphone person are not the majority, and I'm not always going to fall over when someone bumps into me.... but theses are the stories that play in my head when I'm having a rough day, adding the the countless number of reasons to give up, telling me that all of this is more than I can face.

So I wish I had glamor stories of being back to work and how it's felt like coming home and being given armfuls of puppies....but instead it's been another challenge to work through.  To prove how strong I am to people who assume less of me, and to work past how physically demanding it is so I can get paid enough to have a roof over my head and food to eat, if my body that day decides that it'll let me...
I wish this were even close to being the conclusion of my difficult journey but it's not.  It's another chapter.  One I plan to finish gallantly, no less, but still it's another battle to work through.

So that's how I am.  I'll improve physically, I have been a little each day.  And I'm grateful, still, to only have two stories of animosity in the face of what I am facing; there have been countless smiles and hugs and I know it's a fertile environment in which I can grow.  Perhaps my first step is going to be not letting the harsher voices get to me as much as they do.

With my honestly and transparency in my journey, it probably comes as no surprise that my goal is to be understood...but perhaps I should accept that there are some that don't want to know and won't allow themselves to learn about the lives of others.  And with such a big world full of so many artistic, unique, diverse and wonderful humans, it is truly their loss.  So I'll continue jouurneying forward, and hope their negative grumbles don't drown out the jovial cheers of the others.  It's a wonderful world, and I plan to enjoy it.

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.

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.

(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!