MASKS PERCEPTIONS, REALIZATIONS, STORIES, AND “HOW THEY SERVE ME”

Creativity:

I was told, from a young age, “Rachel, you’re good at…art, music…”I perpetuated this story about myself that in order to gain people’s care, attention, love, certainty, and for me to grow, I had to make art, I had to play music, I had to express myself physically through my horseback riding. “Those are the things she was good at”. They’d say. Let’s tell her that. Let’s only tell her that. Oh. And that she CAN’T, and I mean with certainty, write, do math, or science, because she’s “only artistically talented”

I love art. I love creation. I love taking six different random colors and forming their soft palates into a singular form, a bird flying, a horse galloping – freedom. I love to write, let the words flow through onto the paper, wet and laced in sweet sayings of humor and vulnerability. Though, this leads into my next mask, so interlaced,

PERFECTIONISM:

because I will throw away a drawing that doesn’t meet my standards, if it’s crooked, if the lines are too dark, if the paint isn’t the right color. I’d crumble up my pieces of paper with words dabbled about, telling a story of the process, but god forbid the words be misspelled (because I have a story about that), or that my handwriting is illegible (another story). See, because I struggled so much in school from a very young age, I thought, or believed, and made up stories, that (or perhaps some of this is factual, I’m not that great of a speller) but that, actually, my lack of ability to spell, actually got me more attention than if I were to spell correctly. Teachers payed more attention to me when I did poorly than if I were to be average. (The FAILURE Mask: where in order to gain the love and attention, the care that I feel and deemed I deserved, I had to physically try to fail. It could also fall under the category of a SELF-SABOTAGE Mask) That’s where this pull for being excellent comes in, because if I’m not excellent I’m average, and who pays attention to average? My story feeds into this belief, which in then says

YOU MUST BE SKINNY: The ED mask. You must be thinner than the rest, you actually must just be thin, you must see your bones, you must starve, you must control yourself, have control to be thin. If you’re not thin than no one will like you. Only people who are skinny are respected (something which I don’t actually believe others, yet I have a story I tell myself about me). And, also, the mask is a buffer from being hurt. “YOU CAN’T HURT ME, MY FEELINGS, MY EMOTIONS, YOU CAN’T HURT ME, I’M THIN”. People treat me as if I’m more fragile. They dance around me more, especially when treating me (clinically). It’s also a way to seduce love. “If you don’t love me enough, I’ll stop eating. If you love me enough, I’ll eat, if you love me the same, I probably will continue to starve to show you how much pain I’m in, and so that you’ll continue to show me your love”. This story that I have is that people will only love me if I’m “sick”. The sicker I am, the skinner I am, the less I eat, the more bones that show, the smaller the size clothing I wear, the more worry, attention, validation, and connection I get, than if I were of “average” size.

HUMOR:

And of course, I lace my words with humor. I make people feel comfortable with my light and easy personality. I won’t say it’s “all wrong”, but I make up a story that people won’t like me unless, unless I’m light and goofy, that if I’m grouchy, self centered (or even true to my emotions) they might think it’s about them, take it personally, and start to make up their own story and start to not like me. I dance around topics and giggle my way through conversations. I brush off interactions that make me feel uncomfortable with jokes and believe, strongly, that it is my humor that people love me for, my humor, my body, my creativity, and my ability to be

VULNERABLE: which sometimes I am, because I trust the person deeply and it’s right. And sometimes I’m vulnerable for the sake of being vulnerable in a sense that being vulnerable means you can’t hurt me because I’m being so open so how dare you dig in and hurt me right now. I have learned that being open and honest and raw, people see me as a hard worker, and I want to be seen as that someone, and when I don’t get seen like that, I’m afraid that people will say “she’s closed off” and think that I don’t care, and not caring means I’m stupid.

See, it all comes down to, me being stupid. This core belief of mine from growing up when I interpreted people not believing in me and me thinking that I had to play stupid (because I know, I know I’m really not stupid, because I know I’m powerful, determined, and full of all other sorts of amazing shit) to get attention and validation.

It comes down to my worthiness. If I feel worthy of people’s love and attention for who I am as a person, a smart intelligent person, a person who’s authentically willing to show her creative, vulnerable side, not one who is putting it on as a front to seek out, to manipulate those around her to find that validation that I’m more than capable of giving myself.

I am the passionate, determined individual, the person who cares for herself with the utmost respect, whose tenacity flows throughout her body like a ribbon waving in the wind, whose compassion seeps through her pores, whose confidence beams. Who am I? because the story that I’m telling myself is the story that I’m perpetuating. I am powerful, brilliant, beautiful, whole.

July 5, 2018 0

Still Alive

Here I am, almost a year out from my Bi-Lateral Saddle Pulmonary Embolism that, if left untreated, could have taken my life. I spent a month in the hospital (26 days actually, to be exact), from ICU to medical floors, transferred to two hospitals, here I am, that girl; the friend, the daughter, the horsewoman, the dog lover, the writer, the artist, the person who is beginning to not only recovering from a life altering medical emergency but one who is finding herself through it.

I have a multifaceted case (well, let’s start this out with: who doesn’t) of PTSD. Not only trauma based childhood stuff, but complex relationship with medical uncertainties. Tying into my OCD, the genuine fear that something is wrong surges adrenaline through my system, kicking that OCD into gear—If you do X then Y won’t happen. If you do A, B won’t happen. Largely, this has followed suit of me obsessing over small health issues that, because of such life threatening ones I’ve experienced, manifest into obsessive compulsions to fix the situation. Generally, it goes like this:

Something feels wrong. FEELS wrong. I have a multitude of health issues as it is, including a very intricate, incredibly rare Areterious Venus Malformation (AVM) of my left femoral artery, transversing the femur bone, which takes up much of my left thigh. They believe that this, paired with the recent port placement I had, lead to the pulmonary embolism. Amidst the leg issue, I have an autonomic nervous system dysfunction where my body cannot regulate its heart rate and blood pressure, often ending in me passing out or falling. Oh, and while we’re on falling, lest us not forget the two TBI I have sustained, one while riding my horse, fracturing my occipital (back of the skull) and the other, with a migraine, splitting open the side of my head as I fell into a door passing out. So, it is not without reason for my deep fear of death and dying, or at least, having a medical complication arise that is completely out of my control.

But, one may ask, especially after reading much of this blog—have you not spent so much of your life trying to take it? Well, yes, I suppose. On my terms, though, and in some weird way that makes it all different. I will say, being on a vent and waking up from it changed me. I never want to get to that place again, for fear of truly being gone, and leaving all my loved ones behind to clean up the mess that I so thoroughly fought to make.

The OCD/PTSD manifested itself in becoming the most frequent of flyers at the local trauma center emergency department—I’m known by my first name as soon as I walk in the door, nothing to be proud of, in fact, I’m so ashamed each time I enter, but the shame I feel is nominal compared to that of the distress I’m experiencing, and I sometimes, often times, wish I could express this to those who treat me. That I don’t WANT to be in their ED, but the fear is so strong it overrides any shame I have in being there.

May 17, 2018 0

You have POTS! (Postural Orthostatic Tachycardia Syndrome)

I remember the doctor, a lovely, short plump lady, asking me if I got dizzy when I stood up. It hadn’t occurred to me that this wasn’t normal, I know, but it hadn’t. I was being seen at the Teen Clinic at UCSF as a requirement for the eating disorder program I was attending, where they would do a full medical assessment every week including vitals, UA’s, blood work and weigh ins. They were used to us, dispensing our paper gowns for weights and standing right outside the cracked bathroom door for our UA’s.

The eating disorder program was a step down PHP/IOP (out patient level of care) after I had resided in Oregon weight restoring (and sanity restoring, to some degree, too.)

The doctor gently held my back on the exam’s table as I swayed from blacking out. “I’m referring you to cardiology” she said gently.

I met with the cardiologist who was just across the hall, who to be honest, I hated right off the bat (though over the years I developed a soft spot for). The dreaded “you don’t look like you have an eating disorder” he said gruffly. It sent me spinning, only seeing red, feeling the heat crawl up my body and soon the verbal purge of “WHO DO YOU THINK YOU ARE AND WHAT KIND OF DOCTOR ARE YOU” slipped through my pursed lips, followed by a rush of tears.

He did orthostatics: supine blood pressure and heart rate followed by sitting blood pressure and heart rate concluded by standing blood pressure and heart rate. My vitals were conclusive- Postural Orthostatic Tachycardia Syndrome. A diagnostic criteria of a rise in heart rate of a minimum of 30bmp (though mine doubled from 60bpm to 120bpm.)

What is POTS?

Perhaps my approach was a bit rash. I left the office that day not knowing how much I actually accomplished.

It’s now been 6 years later and after trying a pharmacy of medications including but not limited to most beta blockers, Corlanor, midodrine, florienef, salt tabs, adderall and IV Saline infusions (2liters/4hours/2X a week) I’m still less than managed though some noticeable improvements.

August 4, 2017 0

Arterial Venus Malformation…?

“Wow, an AVM!!!” The vascular surgeon proclaimed as I sat in my emergency department room. “Look! Look!” She was obviously amused and slightly baffled, I lost her voice almist my racing thoughts. A what? “And you’ll need to be seen at UCSF immediately”. (As if that’s a thing). My something cool suddenly turned to something scary.

Ever since I was young I had excruciating left leg pain. Pediatricians and doctors wrote it off as growing pains, though the pain did not dissapaite when I stopped growing, in fact, it continued to worsen, though unsure if masked by a torn meniscus at age 12. However, lucky for me I guess the MRI that showed the tear when I was 12 also showed vascular abnormalities which sent me to UCSF’s vascular anomalies clinic when I was 13 to be studied by a good handful of doctors who still had little clue about the Venus malformation or what to do with it then, and was told to keep an eye on it.

Back to present day. We are not without hope.

2 1/2 years ago I went to the ER for what I thought was a DVT. My leg, about twice its normal size, had a pea shaped knot protruding from the crevice of the knee or the “poplitial fossa” area. I went in and they discovered the AVM through diagnostic imaging of an ultrasound, x-rays, and Ct-angiogram. Now I’m back under the supervision of outstanding doctors, and while unfortunately we are at a standstill with me being on Eloquis (there’s not much surgery wise to fix it we can do while I’m on it) I have hope we’re on the right track for me to lead a less painful life.

August 3, 2017 0

Bilateral Pulmonary Embolism

On July 1st, 2017, I was once again (I say once again as you’ll learn later about prior health conditions) plagued by tachycardia (fast heart rate) of a sort that made my body tremor. 250 bmp. Unbelievable. I didn’t think it could be true and watched my pulse ox steadily flash its bright red numbers. I laid down in hopes to lower my heart rate but it’d drop into the low 30’s. I couldn’t win.

I knew something was very wrong. I felt like I was going 100mph in my car on the freeway and then, out of nowhere, a cliff lay just feet ahead and try as I might to sink my foot into the break peddle, the car would skid and screech and twist but it continued to approach the cliff at alarming speeds. Or as others note- “impending sense of doom”. I was convinced the world was going to end soon.

Sharp pain severed my side and sudden intense shortness of breath hit me like someone had beaten my stomach. Then vomiting came with the intense pain. Now, the car was so close to falling off that cliff.

I finally managed to grab someone’s attention (re: I live in an assisted living environment with adults, most of which are conserved, who struggle with their mental health. I, though not conserved, struggle immensely with an all encompassing depression and anxiety, PTSD flashbacks and severe suicidal thoughts and previous attempts and self injurious behavior). Slowly, we got into the van and headed to the hospital for the FIFTH time, though now per request of my doctor we are going to a different hospital.

I walked in, sheer panic written across my face. I was seen in triage immediately. I could not sit I was in so much pain, riddled by such overwhelming anxiety, tears plummeting down my face, writhing in my seat– car was inches away from doom.

They quickly put me in a room, sent me to CT, gave me dilaudid for the pain, zofran for the nausea, and I started to get a little color back and come back to life

“Room 2 has a PE” I heard through the bustle of monitors and busy emergency room noises. I prayed I was not in room 2. I was tired. So tired. I wanted to go home.

The doctor walked in. I was in room 2. “Do you know what a PE is?” The doctor asked? To his surprise I said yes. I am familiar with PE’s only because I was made familiar with DVT’s per a pre-existing congenital condition – an AVM (Arterial Venus Malformation) of my femoral artery that transverses the femoral bone. That was discovered about 2 1/2 years ago, and for another post entirely…… however, was worth an honorable mention here.

Bilateral pulmonary embolism. 26 days later and I’m home on Eloquis. Scary. The hospital was difficult yet I learned so much about who I am during my near one month stay there, and I can’t wait to write more about it!

Ps here’s a neat article shared on one of my support groups about Pulmonary Embolisms