Treason – When The War Isn’t Over

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Hyperbole and a half – best ever #currentsituation

My ovaries are being assholes. I bought into the whole “Hysterectomy will change your life for the better” sales pitch two years ago, and while the pathology report on my uterus confirmed it was medically necessary , and I had been in constant pain and misery since starting my period at 12 years old, what I have left for lady parts won’t settle the fck down.

I had what is considered a total hysterectomy (ovarian status is apparently completely separate) where the cervix and uterus are removed. I opted for the laparoscopic procedure for (in theory) less down time and faster recovery. I still have my ovaries, and honestly I’d have to go back to the post op report to see if I kept my tubes , but the bulk of the defective equipment was given the eviction notice April 15th 2014. Tax Day!

However my recovery was neither speedy or easy, because my Ehlers Danlos makes everything a slow painful process and likes to create excess scare tissue, inflammation and adhesion’s.

Two years later I still feel like the surgery ruined my life , even though it was a necessary evil . I had extensive adenomyosis that had grown in to the wall of my uterus which had started mottling and essentially dying. So the baby incubator’s time was up. I’ve never quite shaken that feeling of my insides being pulled on and lucky me I still have a cycle, so the “functional” cysts my ovaries are so fond of making are always making their regular appearance along with the bloating, terrible skin and mood swings.

However lately it feels that my ovaries are on some kind of self destruct mission in a final act of treason, since being the usual assholes they normally are , wasn’t enough. Any benefit I had post hysterectomy has now been completely negated by the bullshit my ovaries are currently creating.

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From all the pain, pulling, bloating and general feeling like hell I can only assume that my ovaries have constructed some underwater pod like city similar to Otoh Gunga ( yes I made a Star Wars reference but that’s the best comparison to what I imagine is going on). As you can imagine this has put a damper on getting back on the fitness & running wagon, although I managed to heal my stress fracture nicely and have started at square one. AGAIN.

It’s super frustrating because it’s one thing after another, but the most important thing you can do is to get back up, every time. It’s really disheartening to go from being at your best physically,emotionally, etc, then to be continuously knocked down, sidetracked, tripped, you name it. You have to let go of where you were and start from scratch otherwise that perfectionist mentality will kill your motivation.

So yes, while it’s been a two year downward slide since my surgery, I continue to fight whatever bullshit comes my way , because eventually I will be able to climb to the top of Mt FuckThisShit and give everything I’ve been through the middle finger.

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So doctor’s appointments and tests next week, slowly getting back to the gym and running, and lots of spanx for the weddings and events that I will be attending in the upcoming weeks.

If you’re going through something similar, or even if you’re not, do not let that negative voice in your head bring you down. That bitch doesn’t know sH*t. Allow your self to think positively about your self, do things that you enjoy and just because you are not where you thought you would be or want to be, doesn’t mean you won’t get there eventually. Stressing your self out only makes things worse and slows down your goals. It’s okay to love your self , even when you’re not at the top of your game.

 

~Birdie

 

 

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June 2nd

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My baby zebra

Today is my daughter’s 7th birthday. It is also the five year anniversary of my Ehlers Danlos diagnosis. I had the best intentions when I started this blog months ago, after deleting my original blog in a fit of “If I don’t talk about it I don’t have it”. Turns out that doesn’t work so well. I’ve been battling a cascade of symptoms and flare ups between my Ehlers Danlos, Mast Cell Activation Disorder, Postural Orthostatic Tachycardia and Eosonophilic Esophagitis.

In an effort to recap the past few months, it went as follows : EDS “crash” with prolonged difficulty with basic functioning, bed ridden, in and out of the hospital, emergency endoscopy, esophageal stretching, more tests, radiology , trying to fit in long distance appointments with my midnight shift , new meds and the always lovely 25 pound weight gain …..

EDS I swear has a sick sense of humor, the minute I start feeling better, get active again, and seriously start pursuing running, or any activity that might benefit me I get a stress fracture on my right foot (they think) … by walking off the airplane …

No cool story, just literally had my foot collapse under me as I got of the plane after an uneventful 5 hour flight back from Florida (which I felt great down there BTW). So I’ve been in a spaceboot for 3 weeks as 5K events come and go and my new running magazine comes in the mail.

I swear it feels like 2 steps forward and a suplex back, and honestly I want to wave the white flag.

But I can’t

My baby girl was diagnosed with the same Ehlers Danlos (type 3) three months ago. I can’t give up on her which means I can’t give up on myself.

It’s incredibly frustrating and isolating, when you feel like most doctors don’t know what they’re doing and the one’s that do are not giving you any solid promises because of the nature of your disorder.

So in an effort to keep myself from sinking into complete depression, I’m slowly going to post, probably nothing mind blowing, but atleast something to keep me going so the hellbeast of EDS doesn’t take me down.

My crashes have been frequent, the struggle is real and my game face is fading. I’m not well, but I’m not giving up.

May was Ehlers Danlos Syndrome Awareness Month, I made my debut in this video put together by the Ehlers Danlos Society. Catch me at the 3:31 mark

 

 

~Birdie

 

The Struggle Is Real

About that “struggle” I mentioned in my last blog post four months ago … yeah that bitch is real. Apparently I’m the human equivelant of a Rubix cube that just when you think you’ve got it figured out you realize its far more complex then you originally thought. That “brain fog” – such an unassuming , harmless name for something so indescribably terrifying and debilitating – wasn’t just another symptom of my EDS or POTS. This was a fog that crept in and fully engulfed my brain. Day by day I just figured I was tired because of my midnight shift, or that I just needed to excersize more (which is a bitch when you’re too tired to even move never mind do any kind of meaningful routine), or that all it would take is one more day to get through and it would get better.

Except it didn’t.

Each day all I could do was make it through until the next. It was incredibly taxing to complete basic self care skills, I literally had to force myself to take a shower , brush my teeth or even eat.

It wasn’t making any sense. And it kept getting worse. The severity of this brain fog from hell was made clear on our first family trip to Disney. This trip was a huge deal, I grew up in a disney house, we went on several Disney trips growing up and now my kids were at just the right age for us to bring them. We stayed at Port Orleans French Quarter – a resort I had always admired every time we passed by as a kid and I was beyond excited to stay there. We had a character dinner at the Crystal Palace in the Magic Kingdom and my son who typically has debilitating social anxiety jumped up for pictures with each character. We did the Not So Scarey Halloween Party, my favorite holiday and worked for months on costumes – my daughter was Mulan , I was Mushu and my son was a knight.

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I knew I was pushing my energy limits by doing half a day at the park but I figured I’d be ok. I was dead wrong. By the time dinner time rolled around I had to keep sitting down to keep myself from falling down. I felt like my brain was detached from my body. Everything was so loud, I couldn’t see clearly or focus at all. I barely made it through dinner at the Crystal Palace and sat on the curb waiting for the parade to start. I remember leaning against a stroller to nap. My husband had to help me up and asked if I wanted to go back to the room to sleep.

NO

Absolutely not

I did not want this stupid bullshit to ruin our vacation. I pushed myself through 3 trick or treating stations with the kids. My son was getting antsy at that point and wanted to go back but my daughter was in full fledged trick or treat mode. So I went back with him, stumbling through Adventure Land, passing Jafar, the Tiki Room and various barriers until I finally found our way back by the Crystal Palace for the exit. I was heart broken. My son didn’t mind because he wanted to go back anyways, but I wasn’t able to fully appreciate our special event because my mind and body couldn’t keep itself together.

 

That’s how our whole vacation went, I would last half a day and spend the other half asleep. The time I was awake I was dragging myself around, miserable, not able to make any kind of decisions, just operating out of pure necessity. It still breaks my heart to think about it. It was clear that something was very very wrong. I had been use to the tired achyness from Ehlers Danlos, but this – THIS was an entirely different, more vicious kind of symptoms. It did not come with the tired wave of visual disturbance “sparkles” and extremity tingling like POTS, it did not present like anything I had ever experienced before.

When I look back I realise that it had slowly been gaining on me but I would explain it away or try to nap it away, but it eventually set up camp in my brain. I knew something was off at my brother’s wedding the month before, but weddings are energy consuming for everyone involved so the urgency wasn’t as apparent as it was a month later when we were in Disney.

I reached out to various people online, facebook, read articles, tried to make sense of it.

I have Ehlers Danlos type 3 (hypermobility), POTS (Postural Orthostatic Tachycardia), and over the summer I had numerous allergy testing done sue to bizarre reactions and a nagging feeling that something just wasn’t right. My allergy results were all over the place, they even tested me for a gluten allergy which came back negative.

 

I made an appointment with my genetic specialists that I had been seeing at Brigham & Women’s in Boston. I was told that I was very Symptomatic for Mast Cell Activation Disorder. Mast Cells play a key role in allergic responses, and in my case they were switched “on” all the time, which damages every organ system in your body – including your brain. I would do both a blood test (for Mastocytosis) and the 24 hour urine test, the tryptase level for Mastocytosis was normal/negative, the urine test was positive , which meant I had Mast Cell Activation Syndrome. These Mast Cells were literally attacking my brain and other parts of my body.

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She set up the referral to Dr.Norton Greenburger who is one of the doctors who put this disorder on the map. With my test results, past medical history and current presentation he diagnosed me with Mast Cell Activation Disorder. This requires me to be on the allergy “cocktail”of Zantac,Zyrtec, singulair and Cromalyn Sodium ampules.

 

As I’m gaining back my senses, recognizing and respecting my energy levels I’m learning more and more about how complex my medical state is, but there is so much research suggesting a strong correlation between EDS,POTS and MCAD. There has to be a reason why, and if it’s not curable there has to be a way to get doctors to recognize it earlier so people don’t have to go on suffering for years before or even IF they get diagnosed. When I tell you I felt like I was actively dying, I’m not being melodramatic or trying to gain sympathy. That is the dark honest truth about this debilitating brain “fog” , I was spending a majority of my day laying in bed because I felt like I had to lay down before I fell down. I was barely functioning , that is not living. Every day I just kept pushing myself to get that much closer to my appointment with Dr.Greenburger, and now after a month on my new meds I’m slowly starting to feel like I’m getting my life back. I still struggle with the ups and downs of energy levels, but they actually exist now. I feel some of my personality come back, my creativity is making an appearance and I actually FEEL – not just merely existing. Sounds a lot like depression huh? I know the battle is not over, this is not a winable war, but my goal is to manage my symptoms and enjoy the life I was given, even with the frustration and unpredictibility this disorder leaves me with.  Like they say, fall down 7 times, get up 8. Just keep getting up.

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~Birdie

 

 

Shifting Gears

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Admittedly I’ve been off my site or any kind of creative outlet for quite some time. I’ve been struggling physically, emotionally , just every ounce of me is completely taxed to where I’ve been stuck in survival mode. There are things that I’ve experienced, survived ,conquered and made it my bitch. Due to the unpredictable and hard to understand nature of Ehlers Danlos I’ve had a total of three near death experiences, I should’ve taken multiple dirt naps years ago. I’ve had more surgeries, hospitalizations and ER trips combined than birthdays. I’m well versed and knowledgeable in multiple medical topics and terminology is not lost on me. Although some providers sometimes see this as an overzealous anxiety fed by Wed MD. I call it survival of the fittest. I’ve made due with heart, lung, brain and kidney defects as well as unpredictable asthma and allergic reactions. I’ve come to the realization that maybe the hysterectomy I had over a year and a half ago took a lot more out of me than I expected. Maybe that was just the catalyst to the POTS attacks, the crippling fatigue and brain fog.  A year and a half has been stolen from me to the point there’s days I don’t remember what I was like before the surgery.

Yes I understood that the hysterectomy was going to be emotionally challenging to deal with at 31 yrs old, but after the pathology gave a definitive diagnosis of adenomyosis , it became easier for me to accept that it was a necessary evil. It feels like I’ve been waiting ever since to wake up and everything just go back to normal. Except it hasn’t. I’ve traded in the physical pain caused from the uterus of doom to a feeling of endless wandering, a feeling of not being able to accomplish anything or do anything constructive. I’ve blamed everything on either ADHD, anxiety or depression. I’ve done everything from going to cognitive behavioral therapy, switching primary care doctors, trying new meds and supplements. I’ve been back tracking to find my compass, but at this point I don’t know that I’d recognize it even if I tripped over it.

I know I haven’t been on my A game in a long time, I feel like when you get stuck in a rut you don’t even realize that you’ve been stuck for so long because life doesn’t wait for anyone, and your days turn into weeks, which turn into months. It’s hard to find focus when you don’t know what you’re supposed to be focusing on. Once in a while life will step in and smash you in the face with a frying pan full of “pay attention McFly” to get you on the right track.

My 6 year old baby girl is my wake up call. After being diagnosed with Ehlers Danlos Syndrome on her 2nd birthday in June 2011 I have become well versed on most aspects of the disorder. I’ve seen somethings in her that are characteristic of EDS but luckily so far she had escaped any major injuries or implications and I was happy enough believing she had escaped the genetic burden that I was stuck with. But, in typical EDS fashion nothing is subtle, and over the past three months she has developed bladder spasms, joint pain, difficulty walking long distances and debilitating fatigue. If it walks like a duck, talks like a duck, it’s not a unicorn…..

It’s hard to maintain the fine balance of coming off as a respectful, knowledgeable patient with concerns with her child and being seen as an over bearing, hyper vigilant hypochondriac. I have a rare, poorly understood & treated genetic condition that is autosomal dominant that I’ve had over three decades of becoming familiar with. I also know my child and when something isn’t right. It hurts my heart that she can not tolerate walking in stores , participating in walking field trips or has to have warm baths and foot rubs after school because her 6 year old body hurts. A child shouldn’t have to know that kind of dragging pain. It’s infuriating to me because its an invisible anomaly, so if you’re able to climb the hurdle of accepting it your self then you are tasked with getting others (medical professionals included) to respect and understand what you are going through. It’s hard to treat something you can’t see. If doctors can’t get a handle on it how does a 6 year old?

I’ve began the process of trying to get her seen by the genetic specialists at Children’s Hospital in Boston, and the earliest they can see her is March 1st. That’s four months of trying to guess at what I can do to help my daughter. I called her local pediatrician back to update them on my attempts to get her seen (I do not need a referral with my insurance) and asked them what to do about her bladder spasms that have been plaguing her since the summer as well as voiced my concern over her increased fatigue and lack of appetite after school. I was told I’d get a call back, which I did, from the secretary. I was told I needed to make an appointment with Dr. M (not the usual Dr she see’s in the office, usually its NP de jour) for my daughter’s “sleep problems” …. sleep problems … SLEEP PROBLEMS ?!?!?!?

No.

My tone shifted into level 5 bitch mode as I attempted to convey the importance of the symptoms as a whole that is very likely related to a genetic disorder that I have, and it is not merely a “sleep problem”. I’m so tired of being told to come in to see which ever doctor is available for symptom after symptom that is quite obviously part of a bigger problem that can not be resolved through a pee test . I’m sorry if I came off as a giant @$$hole, but when you deal with a complicated medical issue your entire life and start seeing this same progression in your own child , something beyond the usual doctor’s appointment shuffle needs to be done.

I’m tired of the captain obvious questions:

“Is she going to be at the right time/ sleeping through the night”

“Is she eating a balanced diet”

“It’s probably a phase”

“She might be doing this for attention”

just go away from me please ....

just go away from me please ….

No. Just no.

A 6 year old doesn’t apologize for going to the bathroom every 5 minutes at Disney when they’re trying to get through one sit down meal or ride without planning it around where the nearest toilet is. 6 year old’s just want to enjoy Disney World.

So even though I quite obviously have been failing at getting my own shit together , that is not an option for my daughter. There is no one else in this world that knows better than me what she’s going through. She doesn’t have to go through what I did, she can have a better quality of life than me, and I’m going to make sure that happens.

If you have time to kill and would like some knowledge dropped on you, Dr.Brad Tinkle is the leading EDS Dr (yes I know an unfortunate name but get your giggles out because he is a god send)

Bring Me My Tricycle

I’ve recently been made aware that sharing my adventures in Ehlers Danlos Syndrome (EDS) has helped some folks who are on the same journey. Although my old blogger site has been deleted I managed to unearth some things I wrote via Band Back Together. So here it is , 10 minutes of your life you’ll never get back hahaha!!!

No it’s not contagious, and no you don’t need a cream for it. Because I’m lazy I’m going to go ahead and copy & paste an explanation of what Ehlers-Danlos is from The Ehlers-Danlos National Foundation:

“Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.”

Ehlers Danlos could often be found showcased at the early circus shows. *Not all EDS involves stretchy skin

Ehlers Danlos could often be found showcased at the early circus shows. *Not all EDS involves stretchy skin

Hope you enjoyed that as much as I did. In layman’s terms, I have super loose joints. Instead of my bones being nice and snug in their wee sockets, mine sorta float, sometimes getting dislodged (subluxation). This makes things like walking not an option. My body is literally coming unglued, which is quite exhausting and painful.There are several different types of Ehlers-Danlos.

I was dubbed ‘hypermobile,’ an entertaining name not good for much else…except daily pain and embarrassing situations. Like being lifted out of your work chair by paramedics because you’re literally ‘stuck’ in the sitting position and can’t get up. Yeah, not embarrassing at all.

I have a plethora of surgeries that glitter up my past medical history, except the scarring left behind is quite heinous. It’s pretty bad when your OB/GYN takes one look at your c-section scar and goes, ‘Oh, we can fix that’ nice.

As I’ve always said, normal doesn’t apply to me. I’ve had a hell of a time finding doctors that listen to me and stop categorizing me as a ‘drug seeker’ or ‘hypocondriac.’ Listen assface, I’d like to be able to carry my baby upstairs without worrying that my hips won’t unhinge and we’ll fall to our death. Or I’d like to not wonder if I’ll be able to get out of my chair at work without getting stuck and having to sit on a bed pan in the ER for the next 8 hours because I can’t get up.

just a small reference for hypermobility

just a small reference for hypermobility

Always listen to your body, you won’t be wrong.

Your doctor certainly won’t know how you’re feeling because that doctor is not the one going through it. I had to go through a myriad of doctors who thought they were God because they looked at me – a young, healthy, active young lady – and could not see my pain.

A lot of doctors aren’t educated properly on Ehlers-Danlos and think just because you don’t have stretchy skin, or can’t bend your fingers back, that you couldn’t possibly have it. I scored a 8 out of 9 on the Beighton test for hypermobility — it’s too bad I don’t have that kind of luck playing the lottery.

So what to do, what to do? I take one day at a time.

Ehlers-Danlos, like many other diseases, you may have periods of remission or low pain, and other times it peaks and you can hardly peel yourself out of bed. It’s frustrating as hell.

I’m fiercely independent and equally as stubborn. A piece of me dies when I have to ask someone for help for something I can damn well do myself. I don’t want to be a burden, or feel like I’m draining to everyone around me.

Because of EDS I feel pain much more acutely, and it’s harder to treat because EDS doesn’t respond well to pain medications. Ironically exercise is one of the best treatment, although there are times I have to crawl up the stairs, I push myself to do it, because in the long run it is what’s best.

Other oddities to expect when you’re Gumby include chronic dental problems. I’ve always been on a first name basis with my orthodontist and dentist. I had a narrow palate that required an expander (it operated by turning a key, very painful, tell me that’s not the most archaic device you’ve ever heard of), had multiple teeth yanked, and enamel that disintegrates and requires bonding. Delta Dental loves me.

Another is Secondary Raynaud’s disease, which makes me have hands and feet the same color as a corpse. Guess you’re not supposed to have dependent lividity when you’re ALIVE.

Another fun fact: having paradoxical reactions to benzodiapazines, which means things like versed keep me wide awake and make me violent instead of sleepy and happy. I can’t even enjoy the good drugs. Dammit.

I’ve started joining websites and groups to talk to other people who have Ehlers-Danlos. It’s nice to contrast and compare. It’s nice to finally have a reason besides ‘you’re just different’ as an explanation to what the hell is going on.

Good news, even though my children have a 50% chance of inheriting this, they will only be bendy folk. Ehlers-Danlos runs true, so I will never have a child with the most deadly form, vascular. I may end up in a wheel chair, I may not. All I know is that I’m not in one today, I hurt like hell, but I’m still independent.

I got shit to do.

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– See more at: http://www.bandbacktogether.com/category/ehlers-danlos-syndrome-illness/page/2/#sthash.9RWVxZZv.dpuf

The Strength In Letting Go – How My Experience With Loss has Transformed Into An Unparalleled Win

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It’s been almost a decade.

My son will be turning 9 in two weeks.

My venture into motherhood started with a perfect uneventful pregnancy, and ended with a traumatic delivery that left physical and emotional scars. To say that I had been given sub par patient care is a gross understatement. Had I delivered in a veterinary hospital I would’ve been better off.

I didn’t get to see him for 6 hours.

S-I-X

I was left alone, terrified and in unimaginable pain in an empty back room that was used for recovery. There were a half dozen empty stretchers lined up next to mine. I was bawling, doped up from the pain meds that failed to bring relief , and I was desperately trying to get up to see my baby. I vaguely remember a nurse come in and push me back down, telling me to ‘relax’.

“Relax”

RELAX?!?!

Who the fuck can relax when no one will give you your baby??

Where is he?

Is he okay?

Why the f*#k won’t anyone talk to me?

my tiny human 03/02/06

my tiny human 03/02/06

There’s a laundry list of faux pas spanning the nightmare that was my labor, delivery and after care. I’ll spare you the details and give you the cliff notes. It was a hard lesson on how human beings should never be treated. Ever.

It taught me that I never wanted to be treated like that ever again. And I wasn’t.

The c section that brought him into the world taught me that, I can in fact survive the worst experience of my life. It also set the bar for common decency. This was what fueled my determination to have a VBAC. The hospital’s policy against allowing VBAC’s wasn’t my problem. There was zero medical concern for my daughter and I, I wasn’t going to allow a hospital’s aversion to inconvenience dictate her birth experience.

My daughter’s birth three years later was a successful VBAC. I had to travel 35 minutes from my home, but I was going to labor under my terms. And I did. It was against the local hospital policy at the time, but I knew I was healthy and strong enough. The ugliness of the post partum depression that I had experienced with my son switched identities the second time around. The heavy unrelenting depression that visited me the first time morphed into paranoia and seperation anxiety. The voice that use to whisper ” you’re a bad mother … why couldn’t you deliver naturally … of course you can’t breastfeed… why can’t you just love your perfectly healthy baby and stop crying !!!”.

That voice was now telling me – making me feel – that I had to be on alert at all times. I had to have my babies with in arms reach because someone would steal them or hurt them. Every night I went to bed legitimately terrified someone was going to break into my house and steal my precious babies, I got physically ill from the intrusive images of someone climbing through the nursery window and taking away my precious newborn.

I screamed at total strangers for even looking at my children. That’s not normal.

Don't even think about looking at her because I'll cut you. No seriously.

Don’t even think about looking at her because I’ll cut you. No seriously.

I was too terrified to tell anyone because I was afraid they’d think I was an unfit mother and take them away. I was always afraid. I was certain that someone or something would take away what was most precious to me. When my son was born he was kept away from me while I lay helpless for 6 hours. That underlying trauma was the fuel behind the obsessive and intrusive fears.

Now I know better.

Before my grandfather passed away last year I wasted an unimaginable amount of time consumed by the worry and dread of the inevitable. I focused on the finality of his death instead of celebrating his life. This would occur six weeks before my hysterectomy, there was no way that I could process his death in that time frame. His death combined with such a major surgery was the equivalent of an emotional atomic bomb. I wasted over six months after my surgery in the purgatory of stagnate, suffocating, depression. I was a master bullshit artist, I perfected the art of pretending I was okay when I was as far away from okay that you could get.

Losing that piece of me threw me into an identity crisis because I felt androgynous. I had this subconscious attachment  to something that I never really purposely thought about unless it was torturing me, and even though it no longer served a purpose for me I had let it define me. I didn’t feel like a girl, even though technically speaking, I was. I didn’t feel much of anything for a long time.

Medication didn’t help, I so desperately wanted it to, but the placebo effects gave way to the reality that the happy pills were in fact not making me happy. It wasn’t the quick fix band aid I had hoped for. The right answers, the ones that matter, usually come after the pain and suffering of insurmountable loss. You can’t live your life on auto pilot.

This is the 'I'm totally fine' not fine face less than 2 weeks post op

This is the ‘I’m totally fine’ not fine face less than 2 weeks post op

Even though the hysterectomy made sense on paper – defective equipment combined with internal damage from a botched c section – My emotions wanted no part of common sense. I went through the motions of what normal should look like for months. Everything was black or white, “so over it”.

Not so over it. I had my baby incubator cut out of my body. three new scars to add to my collection.I kept my ovaries so I still have regular cycles complete with merciless PMS. My body would continue to torment me like some kind of biological version of ‘Mean Girls’. {Narrated by Gretchen Weiners} :

“I hope you’re enjoying you mood swings, cravings, acne and bloating …. Oh wait – that’s right – you don’t have a uterus ….”

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Assholes.

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Dealing with the post hysterectomy emotional tsunami is forcing me to find an identity as female – even though I can’t make ridiculously good looking children anymore – I am, in fact, still a girl.

It finally occurred to me .

I’m an amazing mother, I’m a good person. I might not always make the right decisions or say the right things, but at the end of the day I do the best I can with what I have. And I’m okay with that. It is through loss, grief, and struggle that a new sense of determination and strength was born. You can either stand with me or get the f*$ck out of my way, because you’re certainly not going to stop me.

~Birdie

Motivation

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My worst vs my best. Back in the 120 club working on gaining muscle and getting my mind in the game.

I’ve been on my fitness journey for the better part of 8 years. That;s almost a decade of fad diets, scheduled supplements, meticulously planned meals containing perfectly calculated portions of carbs and proteins – all of which I swore by until I fell off the wagon. Some falls were harder than others. My gym attendance would go from almost every day for hours on end, to once a week barely getting through 45 minutes.

Life happens.

Regardless of the situation at the time, the reason I kept falling off my routine and losing focus was because my motivation was misguided and my inspiration was coming from somewhere other than myself. Thats right – you have to be your own inspiration. You have to want and need it for your self. That will be your greatest motivator – not some fitness pro who’s parading around on stage with a spray tan. I mean, yeah it would be great to look like that but everyone is different and when you are motivated to achieve a look you weren’t genetically predispositioned for it’s like setting your self up for failure. This is what caused me to fail because I was so focused on someone else’s results instead of focusing on the process and inner strength.

For me, it is so important to understand and appreciate what your body is going through. When you start to gain pride and confidence in your self is when you find the best motivation you could ever hope for. I’ve had more than my share in the health crisis department, a slew of unhealthy relationships and body image / depression like you read about. After my hysterectomy and an epically shitty year I finally had enough.

2 weeks before my hysterectomy - this is how 2014 had been going for me

2 weeks before my hysterectomy – this is how 2014 had been going for me

I’m now finally addressing my depression and making it my personal mission to make myself mentally and physically strong. My weight has always fluctuated with the majority of it settling on the bottom . Where this was previously something I would be self conscious about I am now treating it an an asset. My thicker legs and bubble butt fits nicely into weight lifting. High impact cardio aggravates my asthma . As an EMT I had always been told that you lift with your legs, so having thicker legs meant being a stronger chick in a male dominated field.

Getting back into kicking @$$

Getting back into kicking @$$

I find that we are our own worst critics, hyper focusing on things others probably wouldn’t notice. When you obsess over the details you miss the big picture. I’ve got a collection of wide red hypertrophic scars that require injections during flare ups and silver stretch marks on my thighs, hips and butt. Those are my battle scars and I wouldn’t have it any other way .

I’m working out to be strong, confident and more importantly – happy. I don’t care about numbers or calories , to me they are distractions – back ground noise. Although I’ve been a gym go-er for almost a decade I feel like I’m starting over . I feel like I’m finally getting my mind right and the results are just a bonus. Sure I’ve got a few future endeavors in mind, but for now I’m good with being happy and to me that’s a great place to start.

~Birdie

arnold

My Journey Back To Awesome

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For as long as I can remember I’ve been a big ball of anxiety, my fight or flight in a state of constant chaos, expecting the unexpected. I’ve always felt that I had to be ready for things to fall apart and that I was the one responsible for fixing it, regardless if I was the one that created the problem. I suppose the career I’ve made for myself in EMS/Emergency Services/Public Service feeds into my high strung predisposition . The ironic part is that I can manage other people’s crisis, I’ve been screamed at, pulled vital information out of people in crisis when no one else could have, calmed hysterical callers, worked with multiple agencies at the same time in order to find a resolution to the emergency at hand. All without breaking a sweat or raising my blood pressure. My own life, that is it’s own story. I historically speaking, was completely inept at taking care of myself, my needs and looking out for what was best for me. Everyone else came first, always at my expense.

 

This year has been a learning curve for me. it has sucked more than anything else has sucked before. I felt like I had been repeatedly broken , and I was barely scrounging the pieces back together and for all that I’ve done to help others I felt like I was left on my own. In fairness though, I am not one to broadcast my emotions and tend to be very guarded, even my husband has to pull things out of me after being together for 10 years. Being on the vampire midnight shift doesn’t lend itself to normalcy, neither does living with a chronic illness that many doctors can’t even pronounce never mind have heard of. Dealing with two deaths in my family with in a relatively short span of time, one of which was about 5 weeks before my hysterectomy, left me in an emotional purgatory where I wasn’t happy, I wasn’t sad, I wasn’t angry. I just wasn’t anything. I’d go from being in a state of “vanilla” (aka blank), to a miserable wretched cow, big ball of anxiety, back to vanilla. It was all shades of gray, all my glitter from my rainbow of awesome had been stolen from me.

 

I had been seeing a cognitive behavioral therapist for my ADHD and Anxiety which I was struggling with even on medication. I couldn’t concentrate, I felt like I was being pulled in every direction and not doing enough even though I was over doing it. I felt like a spaz. I couldn’t remember anything, I kept losing things, I couldn’t get out of my own way.  I knew I wasn’t myself but given the year I’ve had I figured it will pass if I just keep trudging through. I finally had enough last month and talked to my doctor about my moods and she gave me a new antidepressant to try. I haven’t been on good terms with those types of meds in the past due to allergic reactions, or it didn’t work or it made things worse. But I wanted my rainbow of awesome back. I wanted it back for me, my husband and my kids. I NEEDED it.

 

I’ve been on it for about a month now and I can’t even believe the difference. It’s unreal what depression does to you, even when you think you’re not depressed. I wasn’t just over tired from working midnights and over extending myself. I wasn’t just bitter or anxious from the lack of social interaction. It wasn’t just daily stressors getting to me. There had been a profound change in me to the point that I didn’t even know who I was anymore and I was just existing. I hadn’t been making connections with my own family. Now I have new found motivation, organization and focus that I thought was failing from my ADHD , I’ve been painting or doing some kind of art almost every day. Going back to the gym to get my physical strength back all most every day. I’ve been playing with my kids and getting angry less. I’m not operating with baseline fear or anxiety anymore.

 

Even doing things for myself like shaving my legs more than once a month, actually taking the time to do things for myself has done wonders for me. It’s only the beginning and I know I’ve got a ways to go, but this whole being happy thing is amazing and learning to find strength – emotional and physical – is something I wish I had learned a long time ago.

You’ve Left Me Now and You’ve Seasoned My Soul

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As I sat in my grandparent’s driveway for the last time I felt like the breath had been stolen out of me, and while I was struggling to process the reality that was in front of me, it still felt very surreal. It was like I was a kid who had just flipped over the handle bars, having the wind knocked out of you knowing you have no other choice but to pick your self up and dust your self off. Everything seemed louder, busier, EMPTIER. It was just more of everything all at once.

I got out of my car and stood in front of my grandparents once meticulously kept ranch style home. A home that had risen like a phoenix out of the ashes after an accidental fire in the early 1960’s. A home that had hosted many family gatherings, holiday celebrations, death and re birth. When I entered the house I was met with the echos of the past. My grandparents were old school Portuguese who kept their house so clean and organized it could’ve been a museum,complete with the ‘sacred’ living room that no one was allowed to even look at except special occasions, namely Christmas. Each room had it’s own name as if it were some kind of mini Whitehouse :

– The blue room : names for it’s baby blue color scheme. Everything was blue, the carpet, moldings, curtains. I think it

was a way to give a masculine undertone to balance out the rosey pink master bedroom across the hall.

 

– My grandparent’s master bedroom : aka my grammy’s rosey pink bedroom. Pink was her absolute favorite color.

Gorgeously custom built in vanity with spacious closets on each side (both for my grammy obviously). My grampa’s

closet was across the room on the otherside of the built in tv cabinent. I remember as a kid sitting with my

grammy at bedtime, reading the National Enquirer and watching Inside Edition as she smoked her Newport

Menthol’s. There was a glass slider that opened up on to a deck that over looked their magnificent yard. In it’s

hey day grammy kept her flowers like the special edition of Better Homes and Gardens.

 

– The Living room : aka the holiday room. It was just that – special occasions only no exceptions, and certainly no

shoes. Hell no. White carpet so sacred that even the Christmas tree couldn’t touch it, they always had a mini tree

on a table by the window. In the southwest corner was my grammy’s curio cabinent that housed her prized

collection of crystal butterflies and ceramic birds and the occasional poodle.

 

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– The TV room: Just past the sacred living room was the tv room where you were actually allowed to sit. It had a real

slate floor, cathedral ceilings and wall to wall wood paneling. A true time capsel for the era it was built in. My

grampa and I would catch the latest episodes of Jeopardy ! Matlock or Murder she wrote in that glorious 1960’s

time machine.

 

As I continued through the house I checked and rechecked pantries, closets, shelves, drawers – everything. I knew they were empty . I leaned against the walls, pressed lightly against the windows. Waiting. Waiting for a feeling , a memory, anything.

 

It was an odd feeling being in a house you grew up in and feeling like a stranger. Half afraid to get in trouble for being there, even though you had a key. It was an empty hollow shell of what it once was. The atmosphere most certainly changed after my grammy died 20 years ago, now that grampa is gone I feel like the heart of the home has stopped beating. It really feels like an object, a commodity – not a living part of you. It was empty, it was no longer ours.

 

After taking what emotional inventory I could inside the house I moved on to the back yard. It’s more than just a yard, property would be more fitting since you could probably fit two houses on it. Wandering near the edge of the back deck I am reminded of the large Hemlock that we use to climb and watch birds from. After some kind of tree infection it had to be cut down, leaving a large open area that is till obvious to me 20 years later. Every time we would visit I kind of expected it to be there and was disappointed when it wasn’t. Across from where the hemlock was there are two perfectly spaced trees that use to hang my grampa’s hammock, which was the perfect resting spot in the spring and summer. In front of the hammock was the main garden where grampa had a huge field of vegetables. It was also the scene of epic battles between my grampa and the squirrels that were the bane of his existence. He would come up with the most ridiculous contraptions to fend off the rodents, which only worked maybe a quarter of the time. In the southwest corner of the yard lays the remains of the once crown jewel – the pool area. A fully enclosed in ground pool with a diving board, patio and complimentary lawn ornaments. Having been filled in a long time ago after the liner started to fail, all that remains is the cracked cement patio, my grammy’s over grown lilly of the valley and decreped mid century lawn ornaments.

 

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My father’s childhood, my childhood, both of my children’s 1st birthdays , a lot of awesome went down. I remember one day, not long after we had moved in with my grampa, he had a big smile on his face. He put his arma round me and thanked me for putting life back into the house. I wish I could go back to that day 1000 times over and hug him and just really enjoy that moment. I feel like we never really appreciate anything until it’s too late.

 

There wasn’t much left at the house , I don’t know what I was expecting, maybe some kind of hidden treasure just for me that was left behind. Everything from my father’s childhood , my grammy’s wedding dress, photo’s, Kennedy memorabilia, were all lost in the fire almost 50 years ago. Most of my grammy’s belonging’s were thrown out, given away or sold after she died. My grandfather’s belongings suffered the same fate. I found a few straggling items in his shop covered in dust, it felt more precious than gold. The house was sold and the deal has been finalized. That entire chapter of my family’s life is closed. This is the part of being a grown up they don’t tell you about.

 

 

What I’ve learned from loss and all the other unpleasantness in life

     

Your tour has ended grampa, thank you, God bless and rest easy

Your tour has ended grampa, thank you, God bless and rest easy

 

 It would be safe to say 2014 hasn’t been a banner year for me. Between the on going circus of my medical condition, the unexpected loss of my uncle, my grandfather’s passing just 6 weeks prior to my hysterectomy , to say 2014 hasn’t been stellar is an understatement. However, I’m not going to write this year off. Why? Because the remainder of the year has untapped potential, even if it is mediocre at best, it is still potential to be not quite as shitty.

 

    After losing grampa I realized how much time and energy I wasted bracing myself for the inevitable. I knew his health was on the decline and I invested way too much energy in trying to soften the blow instead of spending quality time with him, no matter how painful it might have been for me to see him as he was. It was hard for me to see him all cooped up in the house dependent on his oxygen lasso. Before, even though his health was like a roller coaster, on his good days he was busy doing things he damn well shouldn’t have been like chopping down enormous trees, climbing ladders and gardening in blistering summer heat. Towards the end he seemed so sad sitting in his recliner with his oxygen, struggling to use his walker to go across the room, and I knew it frustrated and depressed him because that was not who he was. Although he was a shadow of who he had been he was still my grampa, but I distanced myself as I had before my grammy died 20 years ago. This defense mechanism I employed only made it more difficult after he passed. I had been mourning grampa while he was still alive, and I feel like he had been doing the same. There was a glimmer of happiness when I brought my kids over, and even though he still had his mind, his body was failing him. 

 

The original "look"

               The original “look”

          By distancing myself emotionally from my grandparents towards the end I now feel like I’m on a scavenger hunt to find the pieces that I missed. The questions I should have asked, the stories I could have heard, maybe even pictures I’ve never seen. Somehow the evidence of what once was feels like the only way for me to find closure in their passing because I know what is – the emptiness, regret of not doing enough – is leaving me stagnant. I’m working on accepting that I can be whole again, even without a piece of my history right beside me. I don’t want to keep wasting time looking for something that isn’t there and be able to move on.

       

        You can’t, and you won’t , always win but what you can do it continue. Continuing doesn’t mean you love or grieve any less. For me continuing means learning to build a stronger foundation for my life and knowing that I am stronger than I give my self credit for. While he was my grampa, it was his life. Just because he is no longer physically here doesn’t mean I can’t hold on to our memories. His life was not mine to keep, when you truly ;love someone you have to be able to let them go. He lived 91 years and had a lot of accomplishments, with the army he arrived at Pearl Harbor right after the bombing and continued the fight over in Japan, he came back home got married and started a family and a building business that was well respected in the community. He was the right hand man for the Kennedy’s and helped modify the compound in Hyannisport after Joe Sr had his stroke. He saw and did a lot of great things. Towards the end he wasn’t living life on his terms, and it is unfair to have expected him to continue on. His death freed him of his suffering that had plagued him for so long. I am grateful that he retained his memory, he got to see me get married and have children and my brother graduate college and start his career. Allowing myself to let him go in death will enable my memories to keep him alive in spirit. That may be the best way to heal the soul.

My grampa kicks ass

My grampa kicks ass

 

Tenho saudades tuas

 

~ Birdie