Monthly Archives:: August 2017

My Endometriosis Journey & Life One Year After Surgery

August 12, 2017 Katie A Uncategorized 0 Comments

Disclaimer: There is a lot of period talk in this.. a lot of honest period talk. Yes, that includes sometimes graphic talk about how sick I’ve been while battling this incurable disease.

This is a post that has been a long time in the making. It’s no surprise tat endometriosis plays a huge role in my life and always has. When Angela Lanter shared a post about her journey with endometriosis (you can read her post here), I knew it was time for me to do the same.

I started my period in the spring of my 6th grade year. I knew from the moment it had started (the office was closed because it was after school and I was in an after school program at the time, so I had to improvise in the bathroom while crying about my period starting) that something wasn’t right.

I felt sick, felt like throwing up from the pain and I was so nauseous. I remember sitting in the cafeteria at a table with my head down because I was so miserable. At the same time, I was worried I would bleed through my makeshift pad. Program coordinators kept asking if I was okay and I lied through my teeth that I was.

I wasn’t.

When my mom showed up to take me home, I burst into tears when I saw her and told her what was going on. She was thrilled that I had started my period, brought me home, called everyone (that was SO embarrassing) in the family to tell them and gave me some pads she had saved for me.

The next few days were miserable. I was passing large clots, bleeding heavily, feeling sick because of the pain. I missed school because I was so sick and honestly, I was a bit scared to go back to school because I knew the “friend” who had gone with me to the bathroom had told everyone in our class that I had started my period.

It continued every month. Sometimes twice a month.

And it didn’t get better. I’d wake up more often than not with blood everywhere in my bed, all over my underwear at home. It seemed like every time I went to the beach, my period would start and I’d have to sit on my towel all the way home.

The pain got worse.

The bleeding got heavier.

Everyone brushed me off and told me I just had bad periods and it was just “bad cramps” and they’ll get better with time. Yeah… that never happened. Every month I was sick, missing a week or more of school, using two pads at once and a super tampon. I wore boxers over my underwear just because I was bleeding so heavily.

I was sent to doctor after doctor, put on the pill in middle school. I was told that OTC pain meds would make everything better (that was a lie.. they hadn’t helped before and they weren’t gonna help after seeing a doctor). They brushed me off time and time again.

They tried to do my first pelvic exam but the amount of pain I was in and all the crying made them stop. I was a kid, I wasn’t ready for that shit and certainly didn’t want it.

Over the years I was put on pill after pill after pill. I tried the shot, the ring, the patch. More and more pills and everything you could think of from those heat patches you can stick on your underwear to hot baths and tea that was supposed to help your cycle.

When I finally saw an OBGYN, I felt listened to. While she couldn’t give me a definitive diagnosis without surgery – she was the first one to listen to me about my symptoms, what I’d read online about severe cramps, bleeding all of my other symptoms.

Do you ever have that moment where you look something up and it completely matches everything you’re experiencing? That was the moment for me when I first found out about endometriosis. I sat at the counter staring at the screen in shock because it made sense.

It took a couple years before I decided to move forward with the surgery and before that, I had gone through six months of a drug called lupron (I’ll never take it again) to help “minimize” the disease by essentially putting me into early menopause.

I’m sure you can imagine how miserable that was for a young woman.

When the day came to have surgery, I was nervous as fuck but I knew I was in good hands with my OBGYN. She had listened to me all along, helped me along the way to try and find other solutions to help my symptoms. In the end, we both decided surgery was the best option.

After the surgery I woke up and she told me that while they had found endo, it wasn’t much. I remember feeling crushed. It was my biggest fear – that they wouldn’t find much or anything at all and no reason for how miserable I was.

I was heartbroken.

I later learned that what little endo they found could be because of the lupron.

I had relief for about nine months to a year before the symptoms came back full force.

Unfortunately… I had lost my insurance five months after my surgery when I aged out of my parents policy. That left me stuck and miserable for months before I realized I could go to Planned Parenthood and another local women’s clinic.

It was the same story, same routine… pills, pills, pills and bad periods. They couldn’t do anything for me other than that – they’re limited in that sort of way. I was (and still am) thankful for what they were able to do for me. I was thankful for any relief from my symptoms as I could get at that point.

Ten years later…

I was completely miserable. It hadn’t ever been this bad. Never. I thought it had been bad before surgery and in the years after, but this was the worst of it. I never thought I’d be that sick, that miserable, in that much pain.

I spent days and nights in the ER because of the bleeding and pain. I missed days and days of work and school. I was literally bed bound several days out of the month.

I couldn’t eat or sleep because I was so miserable. Even something as simple as getting dressed was nearly impossible on some days. It was that bad. And without any insurance, I was stuck.

ACA passed and I was able to get medi-cal which has saved my life in more ways than one. It also led me to a doctor that once again brushed me off and refused to do anything. It led me to a woman’s health practice that ultimately changed my life for the better.

It took a few visit (I saw an incredible nurse practitioner who told me I had no quality of life with how far the disease had progressed and how sick I was)  and guess what, another doctor who didn’t believe me and even went as far as telling me the following:

  • She wouldn’t do anything because I was overweight (I wasn’t).
  • I was diabetic so she wouldn’t do anything in terms of surgery.
  • That a double dose of Aleve would fix it all.
  • She would put me back on the pill (Again. I swear I’d tried almost every pill out there at that point).
  • And lastly, she ultimately refused to treat me.

Needless to say, I never saw her again and when it came time for a follow up, I asked for a new doctor. And what happened next changed my entire life for the better.

On my very first visit with her, she said I needed surgery. And I needed it as soon as possible. It felt surreal, you know? I’d been looking for help for so long, someone who took me seriously… and here she was, right in front of me and confirming what I knew I needed.

We started the process after she had given me some options (a hysterectomy or to go in via laparoscopy to clear things out) and sent my file to insurance with all my info, visits with them, ER visit files, etc and left my file with the surgery coordinator.

I remember walking out of that appointment in tears as I told my girlfriend about the appointment, shaking and feel like this wasn’t really happening. I had waited ten years for this.. and it was finally here.

On August 12, 2016 I went in for surgery at a local hospital in the area. Dr. H was going to do excision – a surgery that means she would go in and cut out the disease rather than burn it off, giving me longer relief without the lingering disease.

Even better? That doctor who blatantly refused to treat me was the assisting surgeon that day. She got a first had look at how advanced the disease was and how sick I was.

There was a chance that it would lead to more depending on how far advanced my disease was, but I walked into the operation knowing that and I was okay with that because I needed to have relief and a quality of life again.

I woke up in recovery a few hours later with some complications. My heart rate was sky high, I was put on oxygen because I kept wheezing, my blood sugar was high and they couldn’t get it down.

On top of that, I started to pass out when the nurses took me to the bathroom to make sure I could pee on my own post op and I started to throw up right before that.

In the end, the decision was made to keep me overnight because I was so sick.

Not only that, but the choice was made to open me up all the way because of how advanced and serious the disease was. I had organs stuck together because of adhesion’s. I have endometriosis on my bowels. It was everywhere.

It confirmed everything I knew about my disease and how it had progressed over the years. It confirmed why I was having day to day pain that left me doubled over in pain. It confirmed the heavy bleeding. It confirmed everything.

Recovery was not easy. At all.

I bled very heavily for ten days (so heavy I was using the super heavy, overnight pads all day and night and went through three packs of them, bled through my panties and… yeah, it was bad).

I had a minor infection in one of the smaller incisions.

It was hard as hell to move around, and getting out of bed was nearly impossible early on. I needed help getting dressed or getting my underwear back on after using the bathroom.

I had to take zofran, a muscle relaxer and heavy duty pain meds just to make it through the early days of my recovery. I used a walker just to get around the house. Getting comfortable was ugly and left me in tears.

The worst part of recovery was the depression that sank in. I knew it was a possibility because my hormones had just been fucked with and I was unhappy with how my body looked and felt post op.

I cried over everything. Hell, I cried over the look of food on my plate at meals.

It was bad… and it lasted for what felt like years. Every time I felt like I was coming out of it, it would sink in again and made me feel even more miserable. It was really hard, really ugly and really challenging.

I felt like I was never ever going to get better.

A year later… my entire life is changed.

I’ve lost over 30lbs because I am healthier. I am able to work and go to school without missing any work because of the disease. I have energy. I have no pain from endometriosis (and what pain I do have comes from my caffeine take – it’s always been a trigger). Every now and then I’ll have a bad period, but it’s nothing like it was for so long.

My entire life is different.

I have my life back. I’m happier, I’m healthier.

It’s been a long, long and hard journey to get to where I am now and while I know another surgery might be needed in the future, I am happy where I’m at now. I’m pain free. I have a quality of life.

This never seemed possible before, it really didn’t. I went for years without being taken seriously, with my concerns and symptoms brushed off. I saw medical professionals who brushed me off, refused to treat me at all but through another pill at me (hello, they never worked!) and who didn’t believe me at all.

Yeah, it was a hard road and recovery was even harder – but a year later, I can look back at where I was and where I’m at now. I learned so much about how to advocated and fight for my health and the treatment I deserved. There were so  many days where I was so close to giving up.

But all of this was worth it because of where I’m at now. I fought hard for so long and it took everything in me to keep fighting when I was at my worst, but if I had given up, I wouldn’t be where I am today.

 

 

 

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the sky turned black like a perfect storm

August 10, 2017 Katie A Uncategorized 0 Comments

[trigger warning: the post contains my story and details about sexual assault]

I am being intentionally vague in this post for my own safety, please respect that.

I never talk about this stuff – not even with family. Molli and I will talk about it here and there, but I generally skirt around the issue unless I’m remembering shit and freaking out.

I don’t like talking about it. I hate how it makes me feel and I hate what it makes me remember. I can’t even tell you the exact date, because I blocked it all out when I got out of there. I didn’t know what else to do, how to cope, or how to move forward.

I lost a part of myself in those few days where everything unraveled. I lost a lot of trust in a lot of people who were important to me. I watched people I loved walk away from me as I plead that I didn’t do anything, that I didn’t want any of this.

I watched as someone I loved thought I was involved, engaging and and I begged them in tears that I wasn’t. I didn’t want it. I didn’t want any of us.

I dealt with the fear and so much hurt… so much hurt. I still do.

I talked about it once, on an ancient blog of mine, but quickly deleted it after fear, hurt and shame crept in. It took a family member to ask if something had happened in order to get me to open up a little.

I remember they were driving down one of the main streets in town when they asked. It was summer and I cried in the front seat while I told them what happened. I told them that someone close to me, someone I trusted had assaulted me.

Saying out loud to anyone was terrifying. The only other time shortly after it happened was to a counselor on campus who pushed me to file charges and labeled it as sexual assault. I honestly hadn’t thought about that label at that point because I was still reeling from the entire experience.

To be honest with you, there is still so much that I don’t remember. I started writing this and I’ve found myself staring at the screen for ten minutes because I didn’t remember much of anything. And right now, I am okay with not remembering a whole lot. It’s a lot to unpack and a lot to even go through.. much less relive it through trauma therapy.

I don’t even remember really, how it all started. I knew we had been spending more and more time together, but I never felt uncomfortable. It was nice to get out of the house and do errands together. This is someone I trusted and looked up to – so of course I wanted to do errands together. I was relaxed and comfortable.

And then one night everything changed.

It all happened so fast and years later, it’s still something I struggle with. I still struggle to put the pieces together, to figure out where it all went sideways. I still struggle with the feelings that people thought I was involved willingly, or when someone walked away from me. I still struggle with the fact that even for my own safety, I had to run away and packed up the essentials and close friend picked me up.

For months before this, this person would come into my room when I was asleep and turn off my television. I always fell asleep with the television on because I need that background noise, that distraction in order to fall asleep. I still do.

Looking back now, that should have been my first warning sign.

All I know is one night, they came into my room and sat beside me on my bed. I immediately had that sick feeling in my stomach. And even then, I knew what was happening. I tensed up, moving away, tried to shut everything down but it still happened. They almost kissed me.

My door was mostly closed and I heard someone go outside and slam the front door. I got up and left my room, trying to breathe and not panic or throw up and went outside. They followed, and the person who went outside walked away from me as I told them “nothing happened, nothing happened, nothing happened”.

I locked my bedroom door that night but I couldn’t sleep. I couldn’t even cry.

Trust had been broken, even then, I wasn’t believed that I had nothing to do with this, that I didn’t take part. Even today, that’s still one of the major things I struggle with and one that’s coming up a lot through therapy and just starting to remember things I don’t want to remember.

But I do remember them. Maybe not all of them, and that’s okay – but I remember enough that it still hurts and it’s still raw and makes me feel sick and scared.

The next day it was worse.

I woke up thinking I was living in a nightmare and everything seemed so surreal. I felt like I couldn’t wake up all the way and there was no way the night before had happened… but I knew it had.

And it was about to get worse.

I remember walking into the kitchen and he was in there, standing against the counter and he was talking to me. I don’t know what he was saying, I was trying to tune it all out and keep standing, keep moving and put up walls to protect myself even more.

He hugged me and held me there, telling me something or other before he told me that “you need to explore a little” and “you’re still young, you don’t know who you are” and completely invalidated me and my sexuality as a gay woman. I knew who I was. I knew who I am.

He wouldn’t let me go and hugged me for too long. He may have tried to get close enough to kiss me again, I don’t remember. I still have much of it blocked out for my own safety at this point. Even now… I need that. I need that distance and disconnect.

In the end, I managed to get away and go to my room as quickly as I could, locking the door behind me. I got into bed and started to cry. I felt sick and dirty and confused. I was scared, hurt and angry. I was upset. I was on the verge of a panic attack.

I called a friend and asked if there was any way possible she could come get me and take me somewhere because I needed to get out and get out now. I packed my essentials, knowing I wouldn’t be back anytime soon. I stuffed it all into a laundry bin and a bag, and then left my room – sitting down next to the person who walked away from me the night before.

I broke down again, begging and pleading and trying to make them see that I had no involvement, that I didn’t want this, that I didn’t want any of it. I didn’t want that assault and abuse. I didn’t want to have to leave… but I had to. I had to get out of there because I wasn’t safe anymore and I needed to be in a safe place.

I remember sobbing in there, and then walking out of the house with everything I could grab. I left. I knew I had to do what was best for me, and staying there was going to put me into another unsafe situation that I may not have been able to stop the next time it happened.

When I went to see a counselor on campus a few weeks later, he pushed me to file charges but I didn’t. I was too scared, too worried about what it would do and mean for the rest of us. I was too shaken still, but he labeled it clearly.

I had been sexually assaulted.

And it’s a nightmare. Something I’ll never forget. It’s something I still struggle with – all the feelings and fear that came along with it. The scars and memories I still carry with me. I’m starting to remember bits and pieces here and there as I work through trauma therapy… and it isn’t easy to remember them.

I didn’t remember until a couple weeks ago about the person walking away from me and refusing to believe me.

I have my days where it’s incredibly hard to wade through it, and I have my days where I can keep going. I have days where even though it takes everything I have, I can push it back and block it out and other days where it’s constantly in the back of my mind and making me feel sick.

I have my days where I remember the little details I blacked out and they shake me up and make me feel sick and dirty. I have my days where I realize that I made it through, even though I’m still hurting, still carrying this and still working through it.

I have my days where knowing keeping my distance is the best thing for me but I miss the way things used to be before this mess – where I had a couple people who put my best interests at the top and didn’t walk away from me. I have my days where this entire situation has caused me so much anger and pain that I can’t even stand much interaction around me at all.

I have days where my hyper vigilance is out of control and I’m finding myself checking my door to make sure it’s closed tight, making sure the front door is double and triple locked, where I’m making sure the fridge is closed.

It’s certain movies I can’t watch anymore because of the memories I associate with them. It’s not being able to walk into certain places because of the memories or be with people because they didn’t believe me and caused pain that will never go away.

It’s years of broken trust, one step forward and two steps back. It’s living with the feelings and fear this experience left me with. It’s learning to cope and worth through this in trauma therapy but the fear and anxiety of what I’m about to remember.

It’s learning to realize that I’m a survivor and I’m strong. That despite how many scars and memories I carry, that I’m doing the best I can as I face this. It means knowing that getting out was the best idea for me.

It’s hard, I won’t lie, it’s one of those earth shattering moments. I will always struggle with this – all of it: the hyper vigilance, the feelings, scars, memories, broken trust, pain and the distance I had to create from this.

I’m not the only one who has gone through this, and I know how horrifying this can be.. but I’m a survivor and even though the bad days can outweigh the good days, I’m just taking it one step at a time or one second at a time to protect and take care of myself.

I’m doing the best I can, and sometimes that’s all we can do.

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Sometimes it all gets a little too much

August 9, 2017 Katie A Uncategorized 0 Comments

I’ve been quiet here… and for a good reason. All of these reasons are completely overwhelming, and quite frankly, heartbreaking. Like usual, it’s all come on at once. It’s been non-stop, and a lot of it is the hardest thing I’ve ever had to go through.

Let’s start at the beginning…

This summer I started trauma therapy. Molli encouraged me to start it so that I can have a life where my past isn’t haunting me, and after talking to my psychiatrist (who insurance isn’t allowing me to see anymore.. long and sad story there), we decided this was the best plan of action in order to face my demons and unpack the past I’ve struggled through for so long.

It hasn’t been easy. It will never be easy.

It’s remembering things I’ve blocked out for so long, it’s learning the countless triggers I have, it’s learning how my issues with food tie into my trauma, it’s the aftermath of dealing with these triggers that lead me to pull my hair out and scratch my skin. It’s facing the nightmares I have and the general exhaustion after a session.

Trauma therapy means opening myself up, finding someone who will listen to me. It’s weekly (or bi-weekly) journal prompts to get me to open up, realize what I need to face and work through. It’s weekly or bi-weekly appointments with my incredible therapist who sits with me, listens to me and guides me through.

It’s hard. It’s terrifying to remember things I’ve blocked out for so long. It’s hard to face the hell I went through growing up when I’ve kept it locked away and buried for years.

My grandmother was diagnosed with both Parkinson’s Disease and Alzheimer’s. I’ll never forget the day we got the diagnosis. She had been referred to a neurologist after some concerning symptoms (we were also worried about small strokes) and she had failed her short term memory test. I had noticed things here and there that she was losing stuff a lot, not remembering things… but honestly, I think we all thought it was just age related.

Still, the diagnosis was crushing.

Since then, she’s lost a lot of weight. We’ve had to set up a bed in the living room for her, manage her medications, countless doctor appointments. She’s fallen a few times and it’s left her bruised and banged up.

I’ve seen her lose weight because she can’t eat or has no appetite or everything tastes “bad”. I’ve seen her forget how to write things, remember peoples names, remember what she did that day. I’ve seen her forget how to put a coffee maker back together after just putting the first one together.

I’ve seen her shake so bad she can’t even take the wine at communion and barely walk.

It’s devastating. It’s the hardest thing I’ve ever gone through and I know it’s only going to get harder as time goes on… and that’s crushing. It’s a crushing reality. It’s terrifying and it breaks my heart.

My mental health has gone downhill. Anyone who knows me, or knows of me, knows that I always put myself last. I always do and I always have. And unfortunately, that’s come at a price.

I haven’t been taking care of myself and stepping up for self care. I’ve been having nightmares and being thrust into being a caregiver. My anxiety has blown up and led me to pulling out my hair (And I haven’t done that since junior high school) and scratching my skin until it’s red.

I can hardly eat, and when the anxiety is real bad I throw it all up anyway.

I’ve lost weight because I have a hard time with food when I’m this sick, and it only makes it harder while working towards a diagnosis of an eating disorder and figuring out my food triggers along the way.

It’s the stress of looking for new jobs as I need something full time and the pain of rejection and frustration with lack of communication from potential employers after follow ups.

It’s spending hours in bed, unable to make myself get up and function, but also unable to sleep because of the exhaustion. It’s not having any energy and coming home and crawling right back into bed. It’s hours and hours of crying – sometimes over something or other, sometimes over nothing.

It’s getting angry at things – things I’ve held in over the years or frustration with people not pulling their weight, shifting things around to place the blame on me and the hurt that comes with people not being around like they should be.

It’s learning to distance myself from those associated with my abuse and assault and the fear and anxiety that comes along with it. It’s learning that I’m hyper vigilant from all of this and watching it sometimes take control where I can’t stop locking and checking doors, closing my bedroom, making sure my window closed.

It’s the depression that creeps in out of nowhere most days and the hours spent crying. It’s telling my girlfriend that I’m down again after a mostly good day and spending hours in my bed crying because I’m so down and it all seems like it’s never going to get better.

I had to get a new psychiatrist. Insurance fucked me over and after working with an incredible psychiatrist for two months who really listened to me, who worked with me, encouraged me, talked to me about everything… insurance said they’d no longer cover her.

I called to make a follow up appointment with her and when the office manager broke the news to me, I sat on the phone and cried. And when I got off the phone with her, I cried at my sisters dining room table while she watched me sob and tried to talk me down from the sheer panic and heartbreak that was happening with that bombshell.

They were able to get me in for the following day with the new psychiatrist once I said I needed to be sooner rather than later because I wasn’t getting better on the medication adjustments and addition we had made.

It’s always hard going in to see any new person and let me tell you, my anxiety was through the roof. It didn’t help that this guy was running behind so I was left waiting in the waiting room for 20-25 minutes until he brought me back in.

He introduced himself to me and we briefly talked before he got dirty. He flat out told me that he’s taking me off of the anti-depressant my former psychiatrist had put me on a month earlier because he “didn’t agree” with it. I told him I wanted to keep trying it, we could adjust the dose… but he refused.

Not only that, but he took me off of it with no tapering. Sure, I was on the lowest dose available for the medication – but I’ve always been sensitive to adjustments… and this I realize, may be contributing to what I feel now.

He didn’t listen to me about a medication he wanted to add back in even as he read over my file right in front of me. He added it back in and just increased the dose despite my file and myself saying we’ve tried it in the past and upped the dose but it never helped.

He also didn’t listen to me when I told him that my anxiety was still really bad and it was affecting me physically. My therapist knew, we had a hard talk about that – but this guy… he just brushed it off and wouldn’t listen.

He didn’t even entertain the thought about increasing the dose of my anxiety medication. Not once.

Needless to say, I walked out frustrated and hurt. It takes a lot to go in and see someone new… and then to be dismissed and quite frankly, disrespected when I spoke up and was honest about how I was doing… it was hard to handle.

I stopped in the office and talked to E who is always so so kind to me and willing to get me in early and quickly if I need it and asked if there was someone else I could see after explaining the situation. It was lucky I did because the director was also in the office at the time and I was able to talk to both of them about what had happened and how I felt.

They both promised they’re looking for another addition to the practice and will call me as soon as they are able to hire someone. Unfortunately, for at least now… I am stuck with this asshole and possibly scrambling to find other services that take my coverage just for psychiatry alone.

Needless to say… things haven’t been that great here. I’m taking it one day at a time at this point and trying to put one foot in front of the other, but with everything happening all at once, it feels impossible some days.

I am hoping to be more vocal about my struggles and my journey, but mostly, I just want to help someone. That’s all I want – to know I’ve helped someone, inspired someone, encouraged someone and that I’ve made a difference.

The next few posts will be heavy and hard to write, but I know it’s good for me to get it out and to share my story. Bear with me as I walk through all of this. Your support, love and encouragement mean the world to me.

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