Posts Tagged: endometriosis

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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I Will Still Rise: Surgery, Complications and Recovery

October 12, 2016 Katie A personal: health, personal: that spoonie life 1 Comment

endoTwo months ago today, I went into the operating room for a surgery I had been trying to get for a year.

At that point in time, my health had continued to decline, and it was declining faster and faster as time went on.I saw an amazing nurse practitioner who listened as I cried, explaining at a 7am appointment about how miserable I was. I had been in the ER the night before due to the pain. She told me that I had gone through more than anyone else should ever have to endure, and that while she couldn’t do much for me as a nurse, she could refer me to a doctor and start me on the path to surgery.

The doctor I ended up seeing after two rounds of blood work, two ultrasounds and a month of anxiously waiting while dealing with the daily pain from endometriosis made it very clear at that appointment that she had no interest or plan in even helping me have somewhat of a normal life.

She told me:

I was fat.

That OTC pain killers would cure all the pain (yeah, okay).

She told me to come back in three months, and if then I had “lost weight”, she would “consider” surgery.

I walked out, got into my car and sobbed. I had such high hopes for this appointment and wanted to feel better. I wanted to feel like a medical professional understood me, cared about me, wanted to help me as I had only been getting worse, and worse, and worse.

Instead, I was pushed out and told to make a follow up appointment in three months if things didn’t get better. They didn’t. They got worse. My girlfriend saw me start to wither away because I was exhausted. I couldn’t sleep. I continued to be in and out of the ER due to pain and heavy bleeding. I was only getting worse… and no one cared. emdo2

Three months later, I anxiously made my follow up call.

I spoke up, saying this doctor really was not the right fit for me and asked to see someone else.

The next doctor I saw changed my life entirely.

At that same appointment, the first time I met Dr. Hastings – she agreed surgery was what we needed to do. She sat and listened and watched as I cried, telling her about how no one wanted to help me, how my health was going downhill. I had been in and out of the ER several times in the past year because of endometriosis.

She told me as I left that she was going to help me get the relief I needed, the relief I deserved. That same day, she carried my file into the surgery coordinators office. I was told to call back if I hadn’t heard back in about a week. I walked out of the appointment stunned.

Time and time again, I had gotten my hopes up and had them crushed.

Time and time again, I was left to only get worse, worse, worse.

fight-songThree weeks later, when I got the phone call with my surgery date – I sat at my desk with “Fight Song” playing and cried. This was going to happen. I had a surgery date. I was on the road to recovery. I was on the road, waiting anxiously until my surgery date.


On August 12, 2016 – I walked into the outpatient surgery center, registered and sat anxiously to be called back to be be prepped for surgery. I had hardly slept the night before. I was anxious. I was worried. At the same time, I knew that I was in good hands. I had a doctor who cared about me and who wanted the best for me.

Oddly enough, I had found out just two days prior that my doctor would be having a collegue assist in the surgery. At first I was pissed when I found out who it was, but Dr. Hastings assured me that she would be doing most of the work and the assisting surgeon would be there only if needed. Who was this doctor? Yup. You guessed it. The one who called me fat and made it clear she didn’t want to treat me.

Going into it, I knew that there was a very real chance that I could end up with a larger incision. It was one of those things where we planned for it to be a last resort, but I also knew because of how sick I was – that it was a very real chance it would happen.

My mom came in and we took some pictures before they wheeled me back into the operating room.

The last thing I remember were the jellyfish floating around on the operating room, moving onto the operating table and the anesthesiologist telling me he was giving me some medication in my IV to calm me down before surgery started. I don’t remember anything after that.


20160812_104032 When I woke in recovery, I really had no idea what the fuck was going on. I don’t remember much, even two months later. My mom said I was in a lot of paint, but I don’t remember it.

I remember feeling gross. I vaguely remember my doctor coming in and giving me an overview of the surgery. I remember trying to focus on her and what she was saying but the only thing I could absorb was this:

“We had to do the larger incision, we got in there, and we realized we needed to open you up all the way. It was the best option and we were able to excise a lot of the disease, adhesions and scar tissue.”

What I didn’t know and understand at that point in time was just how sick I was.

I later learned that I was unable to be weaned off of the oxygen, and even with the oxygen, I was wheezing. My heart rate was sky high and eventually that started to come down as we found a pain medication to help… it didn’t last long once they had me up and moving.

img_0230They had gotten me stable enough they thought I could go home and removed the catheter. The nurses helped me into a wheelchair and took me into the bathroom to make sure I could urinate on my own. I remember clutching one of those barf bags in my hand, remembering how I threw up post op nine years ago with my first surgery.

The moment they got me up and started to get me back into the wheelchair, I nearly passed out and threw up.

It wasn’t too much later that they decided to admit me for the night for observation. I was still too sick, too unstable. I was upset, but I knew that this was the best option for me. I hated it. I wanted to go home. I wanted to be in my own bed. I knew I had to stay.

I surprised my nurses over the night 18 hours at how well I was up and moving on my own and how well I had begun to recover. I was still shaky, exhausted and sore. My blood sugar was high but my breathing and heart rate had finally stabilized. I blew those nurses away.

I proved to them, and myself, that I am a fighter. img_0059


It’s been two months now.

In a way, it seems like it was forever ago. What turned into what was supposed to be four one inch incisions, turned into a six inch incision and two months off of work while I recovered.

I had staples. I had a minor infection.

I sunk into a deep post op depression.

When I look back today, I don’t really think I grasped how this surgery was going to impact my life. I knew it would change a lot of things. I knew I would start to feel better as I got further and further into recovery, but I never really fully understand how different things would be.

img_0499I celebrated the day I had my staples removed (that entire experience had me terrified and on the edge of a panic attack, but it was over before I knew it with minimal pain. I felt so much better once those damn things were out).

I celebrated my first shower (thank god for shower chairs).

I celebrated as each steri strip began to fall off.

I took daily incision photos. img_0196

Every day, I started to notice a difference. Some days I slept more than others, I bled heavily for the first week post op. The day to day pain I remember before surgery wasn’t entirely gone… but the surgery had helped so much that I have only had two, maybe three days, where I’ve had to take the prescription strength pain meds.

It’s been a long two months. It feels like it’s been forever.

meI just went back to work last week (surprised my work kids – they had no idea I was even picking them up, much less coming back that day). It’s getting into a new routine. It’s learning that I still need to be gentle on my body. I’m still healing. I had major surgery with major complications. img_0115

It’s a period I shouldn’t be having and the endometriosis pain that comes along with it. Even with surgery, I knew I would still have pain. Remember, there is no cure for endometriosis. It is a daily battle, even with surgery making such a huge difference in my life already.

20160812_143019It’s learning that I still need to rest when my body is telling me to rest.

It’s learning that my body is still regaining the strength and energy I once had.

It’s pushing through the last of school and walking the stage for the local graduation ceremony – one month and three days after surgery. I walked across the stage and become a high school graduate.

It’s been healing – and it hasn’t been easy. It’s exhausting. It’s painful. There are days where I have to stay in bed and just listen my body and take care of myself.

A lot has changed in two months… I’ve come so far, and there’s even more to come as time passes.

Overall, it’s learning that my entire life has changed.20160915_191242

 

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A Year Ago vs. A Year Later

July 28, 2016 Katie A Uncategorized 0 Comments

erA year ago today, I walked out after an appointment I had such high hopes for. I had been referred to an obgyn within the practice where my primary care doctor is. I read the reviews about him, and I was hesitant, but I went.

I went with the support of my girlfriend.

I went with the support of my friends.

I went with the support of my parents.

I went with the support of my sister.

I went to this appointment with hope.

About ten minutes into the appointment, every thread of hope I was holding onto was gone.

Every hope I held onto was torn into shreds.

The day before, I had been in the emergency room, trying to make it another twenty four hours. I just had to hold onto this hope. I had to hold on. I told myself I had to.

When it became all too clear that this doctor was not going to help me in any way, I felt all this hope slip away.

He mentioned hysterectomy, but then refused to do the surgery. I was desperate for any relief. He said “yeah, we can do a hysterectomy, but I won’t do it.” He told me that I was “too young” and that the full hysterectomy would make my life worse. He told me that my breasts would sag because a hysterectomy would put my body into menopause.

He gave me no long term options. He threw a new prescription at me.

I walked into the hallway after the appointment, shaking, ready to break and asked him:

“Will you even consider doing a laparoscopy to treat endometriosis?”

His reply? “No, not at all.”

I walked out of that building with my sister, trying so hard to hold on. I was breaking down from the inside out.

No one cared. No one wanted to help me.

I was already passing time until the next time I had to go to the ER.

I was waiting for the moment where I passed out from bleeding so heavily for so long.

I was waiting for the next moment where the pain was so severe I threw up.

This had become my life.

I had been fighting for so long, and I didn’t want to live this way anymore.

warrior

365 days later . . .

I am still fighting.

I am counting down the next two weeks until I go in for a laparoscopy.

I fought for an entire year to get to where I am now.

I’ve had to cancel plans. I’ve been in and out of the ER. I’ve had doctor after doctor tell me they can’t help me. I’ve had a doctor who called me fat, and basically put up roadblock after roadblock, making it clear she had no intention to give me a long term plan.

I’ve watched my entire quality of life slip away.

It’s gone.

With two weeks until surgery, it all still seems to surreal. It doesn’t seem like this is my life. It doesn’t seem like that I finally found a doctor who listened to me, who wants to help me live again. I sat on the exam table that morning, crying into a wad of tissue while she listened to me.

She gave me options.

She didn’t dismiss my pain and tell me that motrin and aleve would solve all the pain.

She listened. She cared.

With her and my surgical coordinator, I am getting ready for surgery.

I am exhausted. I’m in pain every single day. It has taken so much from me.

I’ve come an entire year with the support of my family, my friends. My girlfriend has been my number one support. She’s woken up to my texts when I can’t sleep because of the pain. She has seen me break down because of the pain. She has stood by my side when no one else was there.

She is the reason I am still standing tall today.

Without Molli, I wouldn’t be where I am today.

In two weeks, she will be be supporting me as I go into surgery. Something we have both been fighting for. When I couldn’t get up, she was there. On the nights I cried because of the pain, she was there. She even wrote a letter to my doctor, explaining how the disease has only gotten worse over the past year.

We are facing more than just surgery.

I am faced with over a month off. It wasn’t something we had expected. It wasn’t something we had planned. I know that I need this surgery, but I will admit that the thought of being off for that long is terrifying. I’m faced with the fact that I won’t be able to work. I’m faced with the fact that this will be a longer and harder recovery.

Yet, I found myself thinking today about what would have happened a year ago if someone had taken my pain seriously. I wonder about what kind of life I’d be living now. I wonder what my life would be like after having surgery before things got this bad.

I still need help. I still need support.

What may have happened a year ago may have changed things about where I am today.

I’ll never know.

In two weeks, I’ll wake up from surgery with a new outlook on life. I’ll wake up knowing that this surgery is happening. This surgery will help. I’ll walk through those hospital doors, knowing I fought long and hard for this day.

I’ll leave that hospital knowing I have a long, painful, exhausting and hard recovery ahead of me.

I still need your help. I still need your support. I am fighting daily.

Even if you cannot donate to the fund to help me get through being off work for so long, your support means the world to me. I can’t do this without you. Your love, support, encouragement helps. Even a dollar or five dollars helps. If you can’t donate, just knowing that I have your support is enough to keep me going for these next few weeks.

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I Need Your Help: Surgery Recovery

July 24, 2016 Katie A Uncategorized 0 Comments

Some of you may know that I’m scheduled to undergo surgery on August 12 for Endometriosis. While it is going to be an outpatient procedure (unless they end up having to make a bigger incision), it is still going to require anywhere from 4-6 weeks off of work to recover.
 
This is not something I ever expected when I was given a choice of two August dates. Unfortunately, this is the reality of the situation. Not only that, but because of how poorly I am given the severity of the disease currently – it is going to be a longer and more difficult recovery than my first procedure in 2007.
I am the person who is always there for others. I have constantly and always put myself last. I drop everything to be there for others, even when I can barely take care of myself. I give, I love. I live to help, support and encourage others.
It is hard to even ask for help. It is not something I do often. Right now? I need your help. I really, really, need your help.
 
Within the last year, I have watched helplessly as this disease has stripped me of so many things.
 
I have had more and more days where I cannot get out of bed.
 

I can’t sleep.

I can’t eat when the pain is so severe.

I have missed countless days of work.

I have gotten behind on the school program I am in.

I have no social life.

I have no energy.
 
I have been in and out of the emergency room. I have been going to several doctors, and several appointments.
 
Even getting through a normal shift at work has become increasingly difficult.
 
I have no quality of life. None.
 
I have been fighting so hard, for so long. I have gotten to the point where I was ready to give up because I just kept getting worse, worse and worse. No one wanted to help me.
 
Instead, I am now going in for this surgery with a chance of having a brand new life where I can actually LIVE. It comes with a price of missing a month or more of work.
 
I need your help. support
 
I need your love. I need your support. I need your encouragement.
 
I’ve set up a gofundme page to help cover the unexpected costs of being off of work for a month or more. It will help make sure I can pay bills. It will help make sure I will have enough to eat. It will help make sure I can get whatever post op supplies I may end up needing that I don’t already have.
 
Even if you can’t donate, just sharing this and spreading the word will be a tremendous help. If you can’t donate, just knowing that you are here for me and support me is enough. I am so lucky to have you in my life and I am so thankful for anything you can do to help, financially or otherwise.
 
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I’m Thankful For…

November 26, 2015 Katie A Chronic Illness, personal: health, personal: positively katie, personal: pretty girl and honey, personal: that spoonie life 1 Comment

63fa1ee0605af33d63d2f12b72130df9I know I haven’t blogged in awhile, but things have been a little bit wild here. I have been swamped with school and spent a day in the ER due to endometriosis complications.

On top of that, it’s been balancing work, family life and then being accepted into the online high school diploma program. It’s been a wild ride so far, but I’ve also been focused on self care and learning what may be “too much” for me. It’s a hard lesson, but one that I need to learn.

With today being Thanksgiving, I wanted to take some time out of my day to share what I am thankful for this year. I’ll be honest and say that yes, there have been some really bad days for me, where I wasn’t sure what would happen next – but there have been so many days where I can look back and see how much I have grown this year.

I’m thankful for…

My girlfriend: Mol, you mean the world to me. I cannot imagine my life without you and I am so incredibly in love with you. I am so excited for the future we are building together and I cannot wait to love you for the rest of my life. No matter what happens, we always have each other. You are my best friend and I am so incredibly thankful for you, and for us. IMG_1071

My friends and family: what would I do without you? You’ve seen me at my worst, you’ve seen me at my best. You’ve listened to me cry, you’ve stayed at my side throughout ER visits. You’ve supported me, encouraged me and were always there for me. You’ve seen me grow this year, you’ve seen me stumble. I am so thankful for all of you. My sisters, my brother, my parents, my grandmother. You mean so much to me and I cannot have come this far without you.

My health: it’s been such a rough year health wise with what seemed like a year of never ending diagnosis appointments, I am happy with where I am. This was the year that I was diagnosed with type two diabetes, polycystic ovarian syndrome and bipolar disorder.

It’s a lot. It’s a lot to absorb, to become used to. I’ve learned what triggers my blood sugar spikes, I’ve been on a handful of medications I’ve had to adjust to and I’ve had to learn to test my blood sugar. I’ve seen my A1C go from a 10.3 at diagnosis to a 6.9 at my last appointment.

My education: this is the year is the year that I applied to a high school diploma program and was accepted! I have kept a 4.0 GPA so far, and have completed three career courses and am waiting for the go ahead to continue since I just finished my last two “qualifying” courses.

Authors: so many of you have impacted my life. A few of you have become friends, you’ve supported me, encouraged me and have been there for me. You’ve taught me about myself, you’ve opened my eyes and your words have healed parts of me. Tamara and Courtney – you both mean so much to me and I am so incredibly grateful for all you have done for me. Your love, friendship and support get me through each day. I am so proud and honored to not just consider you friends, but a part of my family.

To my readers and the spoonie community – thank you. Thank you for being there for me, for listening and taking the time to catch up on my life, learn about my health conditions and to support me along the way. I am so happy with the direction my blog has taken this past year and I am thankful for each of you.

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Positively Katie: New Beginnings, New Meds and New Hopes

November 1, 2015 Katie A personal: anxiety, personal: bipolar disorder, personal: health, personal: highs and lows, personal: mental health, personal: positively katie, personal: pretty girl and honey, personal: psychiatry, personal: that spoonie life, personal: therapy 0 Comments

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YOU GUYS. This week has been kinda crazy, but most of it in good ways. I’ve been fairly busy this week, but still struggling with the endometriosis. I’m surviving, but still pushing through this flare.

highs: CANDY! Seriously. I bought all the best candy for Halloween. I knew we wouldn’t have many kids show up, so I got all the family favorites. Good thing, too. We only had two kids show last night. TWO.

FaceTime dates! Every time we laughed until we cried, we talked about some stuff we are both dealing with, talked about our future… it’s the best way to spend my evenings. I am so so lucky and in love.

Interviews…. what can I say here. It wasn’t a job interview. This summer I applied for a local high school diploma program and completed the qualifying process. I didn’t know when I’d heard more as it’s all state funded and based on grants, so I was surprised to see an e-mail asking me to schedule my IN PERSON INTERVIEW for the program.

I just got home from that and I am just so amazed, so excited and just… it’s overwhelming. It’s a dream come true and I am so thankful for this opportunity. It’s something I have wanted to do for a long, long time. 6cbf532a2c119171d6589ef556030310

I still have a final qualifying course to complete once I get the e-mail telling me to start (next week or two, I was told) and need to complete it (two parts) in a month, from there I am officially ENROLLED to work as a high school student and earn my diploma. 9106387b2fd29a4a2136b332a7a30150

Mental health… I have graduated to every two months for visits with my psychiatrist! She is thrilled with my progress over the last five months, so we are keeping my mood stabilizer at it’s current dose and upped the dose of my sleep meds, but I am thrilled with this progress.

lows: anxiety about that interview… especially last night and just minutes before it. I thought of taking an anxiety pill, but I didn’t and I am feeling much better. Once the interview started and all, I felt so much better and confident.

Endometriosis…. this is the flare that never ends. Let’s just leave it at that.

 

1Overall, a great week with a lot of exciting things ahead! I’ll leave you with a photo I took after my interview today. I got all dressed up for the interview and was (still am) feeling amazing!

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Fact Friday: Endometriosis

October 30, 2015 Katie A Chronic Illness, personal: fact friday, personal: health, personal: that spoonie life 0 Comments

I guess I’m on a roll for these new features, but it’s fun and something to focus on when I have nothing else to do.

This week I wanted to give a quick, five fact breakdown for one of my biggest health challenges – endometriosis.

  1. MayoClinic describes endometriosis as:

Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.

In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.

Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available.

2.There is NO CURE for endometriosis. Yep, you heard me. NO. CURE. That means this condition will never go away. There are treatments for it (and I’ve tried several) but as with any medication or treatment approach – what may work for you, may not work for me.

3. The biggest symptom and indicator many women have is:

The primary symptom of endometriosis is pelvic pain, often associated with your menstrual period. Although many women experience cramping during their menstrual period, women with endometriosis typically describe menstrual pain that’s far worse than usual. They also tend to report that the pain has increased over time. 

4. I deal with the pain by pain medication, rest, hot baths or heating pads. No, this doesn’t always help. Sometimes it brings enough relief that I can get some rest, but lately – that’s impossible. I’ve had several doctor appointments and several ER trips this past summer because my symptoms have only worsened.

5. The most effective treatment for me? Has been my first and only surgery. I had a laparoscopy done about eight years ago and what endometriosis was found was removed and I had quite a bit of relief for awhile. Now that it’s been several years, my symptoms are worse – right back to where they were before my operation. I’m hoping that I’ll be able to have another soon so that I can have somewhat of a normal life.

If you have any other questions, don’t hesitate to ask! Hopefully this post has helped explain some of what I go through with endo.

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Positively Katie

October 25, 2015 Katie A Chronic Illness, personal: health, personal: highs and lows, personal: positively katie 0 Comments

8fb9f982df577e98979283c1bb6071e2Back in the day when I was involved in the high school youth group at my former church, we always began our Sunday mornings by getting coffee and snacks at the local cafe and then coming back to our room. We’d sit on the floor or wherever we felt comfortable and then our leader would open it up.

We always started with our highs and lows of the week. We’d each share our own, and sometimes we’d talk about them further or answer any questions. At first, I was so hesitant to share mine. At this point in time, I was knee deep in depression and living in an unhealthy (and unsafe) environment. I didn’t want to speak up. I was scared.

What those memories bring back to me is how freeing it was to share what was going on in my life. The good days, the bad days, the really bad days. It was a safe place to talk to others my age, I had trusted adults around me and even though I felt like I didn’t fit in (let’s face it: I didn’t. I wasn’t popular, “pretty” or outgoing), I had a chance to share what I was going through in a safe environment.

That’s why this week, during a bad week – I wanted to start the weekly highs and lows. Not only for myself to look back on, but as a way to connect with everyone, to share what I’m facing, and to hear from you.

What did my week shape up as?

highs: my birthday... I celebrated quite a bit for my birthday this week. Work spoiled me, I spoiled myself, I got to go to Monterey with my sister, lunch with my sister and one of my best friends and my dad. I indulged (maybe too much?) with some of my favorite things and food. 12074756_695009221797_1570833329665519035_n

FaceTime dates with my gorgeous girl. 11051977_676444690267_4307485438757227096_nWe had a few of them this week, and each of them had moments where we laughed until we cried. Mostly over ridiculous things, but I wouldn’t trade these moments for anything. We also made a big decision last night but I’m keeping it a secret.

On my birthday, I had posted something on Instagram and was greeted with a comment that I never thought I’d get. It was from one of my childhood best friends that I’d lost touch with over the last couple of years. As you can imagine, it was a flood of emotions and we exchanged phone numbers and have started to catch up. I’m still crying happy tears over this and I am so thankful she is back in my life.

lows: insomnia. Good lord, it’s been horrible this week. It’s gotten to the point where my entire sleep schedule is now thrown off because of it. It’s a mess. I’m so tired and so frustrated and just want to sleep.

Endometriosis…. yeah, no. I’m still mad. My period showed up out of nowhere when I am not supposed to have it and left me in bed for most of the week. I couldn’t go to class because not only was I exhausted, but I was in so much pain. It got to the point where I ended up having to take some heavy painkillers, and I hate doing that as often as I did this week.

Friendships breaking apart… eh. I’m still mad, but I cut them out of my life as they were nothing but toxic. I was dragged into something that had nothing to do with me in the first place, and lets just say, I went off on those responsible and proceeded to block them from every social media outlet I’m active on. It was a mess and frustrating.

Overall, I think it was a pretty good week. I was upset over missing so much class, but it gave me the chance (and forced me) to learn that I have to take care of myself, and not too push myself too hard.

8475f00924944443a11e015d8cd3edadThe good days won over the bad days, and even though I struggled a bit this week – I did the best I could and got on my feet and kept fighting, kept moving and kept going. I didn’t give up.

 

 

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The Guilt of Self Care

October 22, 2015 Katie A Chronic Illness 1 Comment

Let me be honest here. Brutally honest.

It’s been a bad week. Rough. Emotional. Full of pain. Frustration. Stress. And then, just when I thought things couldn’t get harder – depression started to rear it’s ugly head. All while I battle an unexpected flare up of endometriosis complete with my second period this month.

All of this the week of my birthday.

I missed work Monday because I was that miserable. On my birthday.

It’s been rough.

I’ve missed more class this week than I have in the entire semester. Between the exhaustion, the pain and just being unable to do anything – I couldn’t drag myself out of bed. It was either classes, or work – but not both.

I couldn’t do both. fbc5c7c32a79e92133988542e01f159f

I had every intention of getting up and going to both classes this morning, but a rough night of sleep, pain that left me doubled over this morning and the fact that it was one of those mornings where I knew I had to take some serious pain meds, – that wasn’t going to happen.

I hated it.

I wanted to cry (and still do).

Worst of all?

I felt guilty for realizing that I need to take care of myself.

It’s a hard thing to learn that you need to take care of yourself, especially when you are facing so many chronic health conditions. It’s been my biggest fight sometimes. It’s hard. It’s frustrating. More often than not, I’ve pushed myself too hard, too far and too often. e96032de17b086e2017a2c77765d2777

Lately, it’s been too hard, too far and much too often.

When I turned off my alarm this morning, I sat in bed fighting with myself over the choice I made.

Do I go and push myself too far?

Do I stay home and rest?

I’d look at the clock every minute or so, telling myself I still had time to get up, to get ready and get out the door.

Eventually, knowing that I needed the rest, the heavy medication and to take care of myself won. I still felt guilty. Even more so when I woke up after noon, despite knowing how much I needed the rest, despite knowing how bad the pain was this morning.

I felt guilty.

I felt guilty, horrible and selfish for taking care of myself.

I felt guilty for taking the medicine I knew would help me get some relief. I felt guilty sleeping for another few hours when my body absolutely needed it. I felt like in many ways, I’d lost the fight. I’d given in – that guilt was a hungry thing, grabbing onto everything I had and lingering.

fce7b6e1bf9f77bf30006f84921412b5I knew that I had to take care of myself.

I knew that if I pushed too hard, too fast, too often – I’d make myself worse.

I sat in bed, staring up at the ceiling as I felt the guilt eat at me, repeating quietly to myself that I had to take care of myself. I had to put myself first.

There are times where I feel like people around me don’t see how hard I fight. I fight hard. I always have some sort of barrier put up to protect myself.

Sometimes, I stand surrounded by people – and watch and wonder if they can hear me scream as I drown with the fact that self care is hard. Putting yourself first is hard. Learning to do this every day is even harder – but so many times, I feel like it is a silent scream that no one hears.

Do they see the fight in me? I honestly don’t know.

I’ve been at my job for nine years and I am just now getting to the point where I am comfortable telling my boss how I really feel on these bad days, and that is something incredibly hard to do.

Learning to say no, to create boundaries, to take care of myself (in any way I have to), is a fight. Sometimes it’s more than I can handle and I feel like I’m drowning in the guilt – but these are the times where I know I am doing the right thing.

It’s the hardest times that make you realize that you can be at your lowest point, drowning underneath everything but finally feel like you can breathe and just let go.

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Wednesday Words – A Letter to My Younger Self

October 7, 2015 Katie A Uncategorized 0 Comments

(Wednesday Words was originally created by me when I was blogging for The Hunger Games fansite – The Hob. Now I’m hoping to use it here once or twice a month)

Dear younger Katie,
You have already been through so much. You’ve seen your parents divorce, you survived a messy divorce, and moved around a bit. You went through a period of time where there wasn’t enough food, lived in place to place, had some really, really rough times, but you stayed strong (even though you hid the truth from family).

You saw a parent in and out of a psychiatric hospital while you battled your first big bout of depression.

You struggled with an eating disorder (and still do) even after several doctors told you that there’s “nothing wrong”. You survived high school where you were bullied, humiliated by a teacher and began self harming.

You survived a break up that changed your entire life – in good ways and bad. It left you depressed and wondering what went wrong, but you learned that things were better now. It opened up the door to a new relationship – one that is healthy, full of love and with your soulmate.

You came out. As hard as it was, you knew it was something that had to be done. It was hard, and scary. You were publicly humiliated by people you thought were friends. You were called a liar. You were called disgusting. You were told you were going to hell. You were prayed for because it would “heal” you. These same people stalked and harassed you for months.

You survived, again and again.

You don’t know what lies ahead – you don’t know that you’ll be diagnosed as type 2 diabetic just months after your 30th birthday. It’ll come as a huge shock and will leave you wondering WHY. You’ll feel alone and ashamed when others tell you things like “you can’t be diabetic, you’re too young” or “you better get it together and make changes” or “you’re too thin and active to be diabetic”. It’s harmful. It hurts.

You don’t know that you’ll be diagnosed with PCOS just months later, even after the thought of it has lingered in the back of your head for a couple years. While the diagnosis is somewhat of a relief, it brings more hard news – between the diagnosis of PCOS, having endometriosis and being a diabetic… chances of having a pregnancy are slim. It crushes you. You knew there was a chance of this, but you didn’t want to think about. That news from a doctor hit you like a ton of bricks.

You’ll fall in love with an amazing woman, exchange promise rings on the beach in Florida, and make plans for “the big move”. The long distance is hard, but you two are meant to be. She’s your rock, your anchor, your strength when you are weak. She will always love you, for you.

You’ve survived so much already, and you’ll keep surviving. You’ll fight every day, no matter how hard things get. You keep moving – one foot in front of the other. One day at a time, even one second at a time.

Everything you go through now will lead up to where you’ll be later on in life – but don’t forget how strong you are.

One day at a time.

Love,
me.

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