You Call Me Sick

You think I'm sick?  You know what I am. I'm sick of this year. 

Of losing best friend after friend after friend. 

I complained that I wanted a hand to hold when I weep. 

Now I wish just for someone that I can text.

Everyone that got close to me is gone. 

The love I had for them is calcifying inside of me like; making my heart hard and cold. 

I just wanted to love unconditionally. I don't know how to get over losing so many people in so short a time. 

And the stragglers that are left, I fear infecting.  

Perhaps I am my disease. Not Crohn's or arthritis or asthma or hypoglycemia. 

It's me. 

I am the disturbing one petrifying those who come near.  A Medusa who just wants a hold someone; now too afraid to love anyone new or to chase after the loves I still need. 

It feels like drowning. 

Today once again the cycle began. 

Someone figuratively slapped my wrist for sitting when I needed to. 

Silly me. My brain clearly only functions at standing night.  And because I responded "well I need to do this," HR is now involved. 

They say they're here to help but with the Olympic hurtle track they put between me and working without feeling like an outsider, it feels more like they're trying to discourage me from trying at all. Unless I can get a gold metal in humiliation and tenacity, while not getting paid and eating instant potatoes as my only meal --only then am I allowed to do what my body needs without having to feel fear or shame. 

And the battle never ends. I thought I won this twice before but here they are again, setting he hurtles in front of me. Again the healthy ones with their misplaced concern decide for me that I am sick.

They want me at 100% and ignore my whispers that I never am. Ignore me pleas that I need this to survive. Ignore my tears, my feelings, and my pain: because their voice is louder than mine. 

They don't understand yet they decide what I can't do. I can't sit and still do my job, they say (ignoring the fact that sitting hasn't impaired me from shining at what I do). No, I can't sit.  But if I hurtle my way to the paperwork at the end of the course, suddenly it isn't an issue!  So sitting without a piece of paper: Too sick to function!  Sitting with a piece of paper: Call me Heather Normalton.

It's a flawed system and I'm sick of it.  If I need to sit and it isn't causing problems, let me be. Don't pretend you understand how difficult my life is. Don't even try. Those who do become petrified or flee.

It's a lonely existence. 

And you're right that I'm sick: sick of everything being this hard. 

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)

Post-Mortem on West Coast Me

          I have had a pretty rough year.  I moved out here under the pretext that I was paving the way for my love and I to live together in a city we had dreamed of for two years.  I want to work in TV/Film and he could do anything out here, acting, programming, urban farming, literally anything, but he just wasn’t ready to leave yet.  So I moved out first and stayed with one of my best friends.  I knew her and her family for over a decade and was so thrilled for the opportunity to save some money as I lived with people that I loved.  

Within the span of a month, however, my once-love said that there was a possibility that he would never move (something that absolutely would have kept me from leaving had I known this before I was already here) and my friend’s family said that they needed my room back and that I had a month to find a new place.

          So I found a place quickly.  It was far from work, however; one day I left three hours before my shift and was still late.  So obviously I needed a different space.  I applied for a room somewhere, almost lived in that landlord’s guest house, and then there was another space that was available in the original building.  It was her old office and I loved it.  It had a loft for the bed, a little patio, and more space than I’ve ever had.  It had a shared bathroom down the hall, but honestly I’d rather share a bathroom than a kitchen, so I was happy.  I also knew that my love would like it, if he moved out here.  He always loves little balconies and there was definitely enough space for both of us.  It was terrifyingly more than I had paid for rent in my entire life, though, even though it was considered cheap for this city.  So I knew that every financial woe I’d associate with him, for making me believe that he was going to come here as my partner, and instead he abandoned me to figure it out on my own.  I realized he wasn’t a part of my life out here, and wasn’t try to be, so I called something that was already done.  Plus without the pressure of him coming here to be with me and to help me, perhaps I wouldn’t resent him for how much I was going to struggle.

          And things were okay for a little while.  It was hard being on my own after a few years of living with a love and before that being surrounded in school by people who knew you and could see you change.  That’s one of the best things about friends; they remind you of when you grow.  And yes, I made a few friends out here.  I pushed myself to go out more than I usually would and with the safe umbrella of my coworkers, I felt confident in my West Coast body.

Things were getting harder, though, and I was losing weight from not eating enough as I couldn’t afford much food after paying rent.  I don’t know how much that ended up attributing to my health, but about two or three months later I was in the hospital.  You know that story though; I was in for 8 days, out for 6, back in for 10, and when I got home I saw that my landlord wanted the space back as her office.  I had signed a year lease, but she never gave me an original copy and when I requested it at this point, the contract now said that it was a month-to-month lease.  She also had a commercial license for the building, not a housing one, so I didn’t have any renter’s rights, and so I had to move.

          Also, at this point, I had lost about half the friends that I made out here and half of the ones that were leftover from high school.  And it makes sense; my life is anything but easy.  Some did it tastefully, some in a way that hurt so much it’ll be hard to ever forgive.  Basically I was in this space of feeling alone and like a burden to everyone I loved, fearing constantly losing those that were still by my side.  It made me afraid to reach out to anyone but I still so desperately needed help.  There were many nights that I wept alone, simply wishing for someone to hold my hand.

It was moments like this that made me really miss my love and my makeshift home out there.  I had more people in Philly telling me that they wished I were closer so they could help, than I had friends left in this city.  And I became nostalgic.  It could be a “grass is always greener” mentality, but I longed for the happiness that I had there.  I tried to get back together with my once-love, too, offering anything: to leave the West Coast, to move wherever he goes, to start over somewhere new, to wait for him until he was ready, even to pay for a plane ticket for him to see if he could be happy out here; because I realized that more than a career in TV/Film, I want to have a life with people that I love.  And in the last two years I have lived in four cities, and was happier in the three that I was together with him, than I have been here without him.  He declined.  It’s so hard to know exactly what I want and not be able to work for it.  Everything I’ve ever wanted I could achieve with hard work; it may not have been easy, but it was always worth the happiness that I made for myself.  And I’ve discovered a key to escape my unhappiness here and was told not to open that door.

Also around this time was when I moved in with the roommate that after one day together decided she wanted to break our lease.  That actually was to my benefit, ironically, because I didn’t want a roommate anyway (especially one that was that unaccepting) and our building manager showed me a studio in a different building that he manages and it’s exactly what I can afford and it’s all mine (and no shared bathroom this time).

          So aside from feeling like I am in a city where I’ve only felt pain and loss, I have the perfect apartment.  It’s also about the price that a studio in any city would be, so it helps me feel less like this city is taking my money and my freedom with it.  That said, I don’t know how to find my happiness now.  It’s not that I need someone else to be happy; I’m happy by myself and like myself quite a bit.  Instead, it’s that I feel a greater joy at making those that I love happy.  I’d sooner get my once-love a toy from his favorite anime, than spend that money on something for myself.  I’m not selfless, I still take care of me….there just isn’t that much that I need.  A roof over my head, food that doesn’t make my belly hurt, a blanket because I’m always cold…and that’s about it.  For instance, my little hermit crab has a mansion with three water dishes (salt, fresh and gatorade), two kinds of food, coconut substrate AND sand, mineral cubes, a climbing branch, a giant “tree” to climb on/in, a hermit hut, two sponges and three extra shells.  I also have a humidity gage and thermometer, as well as a nighttime heating lamp to make sure that my baby one has the perfect conditions for the happiest of homes; because seeing him happy makes me happier than anything else.

This is the capacity of love that I want to give.  And without my once-love, I don’t know where to begin in rekindling that extra happiness.  I think the first step is getting out of this isolation of no work and no socializing.  I need to be around people again.  That’s why I decided to go back to the East Coast for my birthday.  So many people I love are there, and it’ll give me a chance to see my former city without it being tied to my ex.  Perhaps it’s the layout of the city that I love.  Maybe I identify more with the hard working East Coast over than the lax spirit of the West.  I could miss traveling and hopping on a bus for two hours and being in a different state.  Perhaps I miss walking around for everything I need and feeling independent of rides from friends.  Maybe it’s that I felt safer there than I do here.

          One of my doctors thinks not feeling safe is a key to why I’ve been in pain.  She thinks that my brain has been mimicking the symptoms of my Crohn’s disease to warn me that I’m in danger.  Perhaps it could be that I no longer have 3,000 miles between me and the woman that abused me.  Maybe it’s that my ex always made me feel safe, and now I’m on my own.  I don’t know how to feel safe by myself.  And I don’t need anyone to help me with the battle, I just want someone to hold my hand after the fight.  (And the hardest part is I know whose hand I want to hold, and don’t really want anyone else’s.)

          So I’m really excited to see what this trip brings.  I’m hoping for clarity, less pain, lots of fun, and to get to see the people that I love so much.  I really felt like myself last year, that I was growing into the person that I want to become.  Hopefully this trip will help bring that forward motion back to a city that’s felt pretty stagnant.  Maybe even, through the eyes of my all-knowing friends, they’ll help me see that in this year, which has felt a like a waste of my time, actually helped me grow into something I can be proud of.  That’s what I hope for the most.  This city has never been very good to me, and I’ve lost so much this year; I don’t want to regret moving here.

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.  

I Couldn't Sleep, I Was So Excited...

1 am inspiration:

I have no stairs to get out of bed.  I haven’t left my room in over 24 hours because everything I need is in here.  My kitchen, my sick, my bathroom.

At my old “studio” there was no running water and I had to leave my space, first climbing down from the stairs to my bed, across the entirety of the apartment, to then pray that no one was using the bathroom when I needed it….no one is ever in my bathroom now.

I can leave my time of the month things by the toilet.  I can leave my conditioner and soaps in the shower, without worrying about them getting used or stolen or even just moved.  I keep all of my spare toiletries in there too.  No one is gonna take them because this is all mine :) 

I don’t have any weird roommate that’s going to judge me for what I am facing.  No one comes in here, into my sanctuary, unless they will contribute to my happiness.  

And I get to make that rule and it’s going to be honored; no having to convince a sociopath that the space I am paying for merits privacy.  That is understood.  I even have two locks on my door :) 

And there’s a little desk in my closet!  It’s like a hiding in an already hidden place.  Inspiration has come to me there, twice already in the last day.  I love it.  I am going to love this so much.

It’s still hard because I didn’t want to live alone.  I had a solid partner once, who was supposed to share this with me.  When I moved here almost a year ago, I thought I was coming to stake out a place for our future.  Now it’s only mine that I’m looking for and I have found it.  At least for the next year, this is my near future, my present, my space, my room; and you know what?

I love it.

It’s little, but it’s all I need, and it’s all mine.  I am very, very happy here.

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.

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

There's a cloud looming over me....

Oh loves, I'm not feeling well, emotionally and thus physically. 

I think it's important to admit that I'm scared. Perhaps by acknowledging it I take away some of its power over me. 

I'm scared of small things like figuring out my new bus route to work, and I'm scared of larger things like living with someone that has little understanding of chronic illness and how exhausting it is to be in constant pain. I'm scared of using a wheelchair but also too terrified not to; though I'm afraid that trying one will end being a  to be a waste of money.

Money is terrifying. I'm worried that I won't be able to work enough hours to afford rent - but here's the thing: I know I will. I know that I'll master this bus route and look cute in my chair. I know that I'll work enough for rent because I kick ass at work have missed it constantly since being sick. So I'm afraid of those things now but I know ultimately that my strength will push me through to success. 

So what terrifies me then, is what my strength cannot carry: and that is the relationships that became warped by my extreme circumstances and ultimately lost entirely. I don't know how to fix that. I mourn those that I've lost, some of whom taught me how to love. I don't know how to live each day with such gaping holes in my heart. And that terrifies me and stings constantly. 

I want to share this moment because this is part of the journey. It's not all hopeful with teddy bears and roses; some of it is weeping alone and wishing someone were there to hold you. 

I just hope one day I find someone that will, who will hold me and stick by my side. And I hope not to have hurt those that tried. 

I am lost at what to do; and now at what to say.

But this is my truth, and so I will share it.

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.

Still Celebrating

I went to lunch today with one of my best friends parents; they've seen me transform over the last twelve years and I feel honored to have them reminding me of how much I have changed and accomplished. Moreover, they have become my family, and have been rigorously following all of what's been going on with me medically; thus it was such a treat to be able to eat today, and to get to spend that meal with them. 

I am so full of love for this incredible duo, who bring nothing but light to this earth. I feel honored to have grown in their sunshine. 

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!

Swallowing another camera....

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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.

GoFundMe Update #2

This was my reaction when I first got my funds from you guys. This just before I ate my first meal in almost a month, and the fact that I could afford it without stress, as well ad get to my doctors appointments and afford my medicine......it is amazing. You've all afforded me the ability to do what I need to get through this and I feel so incredibly grateful and supported. Thank you.