Posts Categorized: personal: that spoonie life

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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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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#MedicatedAndMighty – Why I’m Taking Medication for Mental Illness

November 6, 2015 Katie A Chronic Illness, personal: anxiety, personal: bipolar disorder, personal: mental health, personal: psychiatry, personal: that spoonie life, personal: therapy 0 Comments

04b98602857b22cd85129f52d6e64cd7When I saw this post on BuzzFeed, I instantly knew that I wanted to turn it into a blog post of my own. It had been lingering in the back of my mind for awhile, but it didn’t hit hard until I read this post yesterday.

For a long time, I fought with the idea of getting help. I’d sit in a funk for awhile, debate over finally calling EH where my doctor had set up a referral for me. Eventually, it’d pass. It took awhile, sometimes longer than others – but it would pass.

It didn’t mean I wasn’t sick anymore.

I was. I knew it. Those closest to me knew it. Deep down, I was wrestling with the idea of getting help. I knew that something wasn’t right, that this back and forth, the battle, the flip of a switch mood swings and everything I was feeling wasn’t normal. It wasn’t healthy.

It wasn’t until last winter where I finally knew that I was either going to give up, or find help. My first try got me nowhere and basically was told that I wasn’t “sick enough” to get help from the county mental health department. I still look back and think, had I been worse… that outcome could have been so much worse than it was.

7395b496d3afbe4bb7e0bbfc64a0b70aMy biggest fear at that point in time, was starting to come true.

Getting out of bed was a fight.

Getting ready for work or class was a battle.

The smallest things would trigger an avalanche of emotions.

I wasn’t sleeping.

I was hardly eating.

It was getting worse and worse as every day passed. I felt like I was drowning, sinking and that I was going to feel this deep depression for the rest of my life.

That’s not even including the anxiety that was quickly taking control of almost every aspect of my life.

So, one cold January morning – I walked into my doctors office, broke down in tears and explained what was going on. He was the first medical professional to listen to me. To really listen and see what this was like for me. I left the office that day with a referral to EH to see a psychiatrist and start therapy, but also with a prescription for an anti-depressant.

The adjustment was… hard. I slept, a lot. My moods stabilized somewhat, but then started bouncing around again. I was sleeping 10-12 hours a day once the medication entered my system, and even then I was exhausted. I knew it would take time, that it meant I may have to try other meds.

Yet, I knew that starting medication was the best choice. Nothing I was doing on my own was helping, I’d lost weight, I’d lost friends (later realizing this was their loss and not mine, as they left me when I needed my friends the most) and set out to work through this.

In the end, I ended up seeing a psychiatrist about six months ago.

I was diagnosed with anxiety and bipolar disorder. I was given more medication, with some adjustments here and there over the past six months. It took awhile, but I slowly started to see the difference.

Taking medication meant I could get out of bed.

Taking medication meant that I could make it to work and to school.

Taking medication meant that I could finally feel stable again, despite having a low here or there.

Taking medication means that I am taking care of myself, and in the long run – maybe this is what I needed all along. It took awhile to get to here, and previous experience with taking medication in high school left me hesitant and fighting the idea.

Taking medication means that I am on the road to becoming healthy. Taking medication daily means that I can have a chance to have a normal, healthy life. While I’m still fighting my mental illness, I am taking the biggest step I can in order to regaining my health.

I’m finally starting to feel like myself again.

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On Chronic Illness, Friendships and Relationships

November 4, 2015 Katie A Chronic Illness, personal: health, personal: that spoonie life 2 Comments

Since I’ve become sick and have started living my day to day life with chronic illness, I’ve learned a lot. I’ve learned how strong I am, how much of a fight I have in me, that I can reach my goals, that I’ll have the good days and the bad days. I’ve learned that in order to be healthy and happy – I have to take care of myself.

I’ve also learned a lot about friendships.

And look, it hasn’t been easy.

People I thought would always be in my life, left.

Friends I thought I could trust, I can’t.

People I’ve loved dearly have left me behind, unable it seems, to deal with the plans life has thrown at me.

I’ve been broken, beaten and let down.

I’ve been dragged into situations that had nothing to do with me, torn apart and made to look like the bad guy. I’ve had people blatantly try to sabotage relationships and my own happiness.

I’ve had people I thought would be at my wedding, leave me behind. I’ve said goodbye to more people than I thought I ever would – but…

d478419b81e7d67abdd275e78281880fI learned that letting go is something I have to do to not only be healthy, but to be happy. I cannot sit around and let that negativity into my life. I struggle day in and day out as it is. I cannot let toxic people invade my space, try to silence me and try to ruin my own happiness.

Instead, I stood up. I stood up to the negativity. I stood up to toxic friendships that I let linger for far too long. I used my voice, one that had almost been taken from me. My own voice, that had been censored.

I had been told through others, that by speaking up, by venting and letting my own frustrations out in my own safe place, that I was stirring up trouble. I wasn’t going to allow my voice to be taken from me. I never will. 2a81792fdda015b2b760d614afa4f747

Instead, I severed ties.

I did what I had to do. I did what I had to do for my own health. I let go because having that negativity in my life means I can’t chase my happiness to the fullest. It meant that I would always be walking on glass, paranoid and ready for it to shatter all around me.

No matter what life has thrown at me, my own health and happiness matters the most. I refuse to be drawn into the drama, into the toxic and negative lives others thrive on. I refuse to be silenced.

I’m a fighter. I’m fighting for my health and my own happiness.

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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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