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]

My Life is Changing

I’ve lost a lot since being sick, and have had a lot of time to think about what matters to me and why I’m still fighting.  It’s not art.  I thought it would be.  I thought that being in this city to pursue what I’ve been working towards my whole life would be the reward.  But it’s not.  I’m not finding student films to audition for, nor writing screenplays as I am on bedrest: Instead I’m dying to jump into someone’s arms.  To spend time with people that love me.  To make scarves and crafts for the people I love.  Anything to show them how much they matter to me.  People are everything, I’m realizing, and I’m willing to give up anything to be with them.  More than any career, I want people to love, and it’s terrifying to release myself from a goal that I’ve had for over a decade, but it’s also a relief to know what I really want.  And that’s a family.

So I’m not saying I’m going to go out and get pregnant and raise a bunch of spawn to feel loved, but rather I’m willing to make changes to my life to be with those that I still have left.  Because this has been some of the hardest months of my life (and I haven’t had the easiest of lives) and those that are still here, willing to hold my hand and listen to me as I cry, they are more important to me than any possible career.

I don’t exactly know what this means: I still only know how to express myself in writing and feel more connected to acting than anything I’ve ever found.  But I would rather have a life without artistic success but people that I love, than achieve success alone.

So we’ll see what the future brings.

Tomorrow I move to a new home, one that I never planned on having, without the people I thought I would live with.  So I’ll see how it fits into my future. In the meantime, I know  I am willing to do whatever it takes to keep in my life those that I love, though I don’t know yet what that means….or if that’s enough not to lose them.  But I have to hope it is.

So change is happening and change will continue to come.  But if it brings me closer to those that I love, then I have to love change, too.

image by Tobias Tovera

Society Debut

So I'm heading out into the world today, with a crown of flowers and a borrowed NYC goddess at my side. 

I had a rough couple of days with the pain, which was physically, mentally and emotionally discouraging...... So going out on the town today would be a scary challenge were it not for the incredible support of my team. This is Jesse. She's just part of the magic, but she has so much sparkle in her that she makes lighthouses jealous. And I'm so lucky to have her lighting my path to happiness today. 

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 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.

An Ode of Praise for My Body

Some thoughts on boobs

The 11th CC