Five Years Ago, Today…

Five years ago today I woke up bright and early, headed to Bankstown Hospital. I waited in a small room with an elderly couple until the nurse called my name. I am tagged, weighed and dressed in a beautiful white gown, socks that didn’t cover my toes and what I can only describe as a cotton, blue shower cap. I confirmed by details and hopped into bed. I had been told not to take any painkillers when I woke up, so they checked my details a second time and gave me some IV-Panadol. Not long after they wanted to be really sure they had the right person and checked my details yet again before rolling me into the pre-op room.

Enter Gyno, “so, Alexandra, I see we are doing a cystectomy today.”
“Uh, no. The cyst resolved itself; you said you were doing an exploratory laparoscopy.”
He giggles “Oh, okay then,” as he looks up from his notes.

They confirm my identity one more time before the anaesthetist gently squeezes my hand, gives me the mask and asks me to count slowly down from ten.

10… 9… 8…


I woke myself up with my own screaming a few hours later. “Did they find anything?”

It turns out, they did. Here Annie will show you what the inside of my pelvis looked like before the Gyno removed the Endometriosis (versus a healthy one).

Annie and 1st Endo (1)

Hi!

As I left the hospital a few hours later, walking in the hunched posture my body had become accustomed, a nurse said, “walk straight, you’re all fixed now.” I believed her.

Even though the surgery wasn’t a cure and it didn’t take away the pain, I was finally validated. I was no longer mystically causing myself physical pain with my mind. There was a reason. There was a disease. It was my diagnosis day.

Today marks my 5 year anniversary since I was diagnosed and look how far I have come since! Praise God!

So it with a healthy mix of sarcasm, cynicism, gratitude and hope that I say…

Happy Endoversary, Alex!

One Way: Jesus

…you’re the only one that I could live for. In troubled times it’s you I seek, because you’re the only one I need. I look to you and you are always there.

Photo taken in Melbourne was I was scouring the streets for street art, 2015.

#Jesus #oneway #grace #faith #love #john146

Jesus Christ Superstar

Number 8 & first amateur musical of the year was #JesusChristSuperstar by @queenslandmusicaltheatre !! I was pleasantly surprised by the quality of the principle cast and orchestra! It was certainly 100x more enjoyable than the Lismore Workers Club production I endured as a kid. The talent of #MaryMagdeline was fantastic and she was absolutely stunning!… and who would have thought #KingHerod would steal the show with one number. My love for the music was reignited – I think I have a new album to keep on repeat for a while! #ayearofmusicals #musicals #communitytheatre #queenslandmusicaltheater #spoileralert (at UQ Schonell Theatre)

Little Shop of Horrors Take 2

Number 7b – what do you do when a new group wants to see a musical you were already seeing? See it again and then take 100 ridiculous photos posing with a plant! Thank you for another stellar performance @littleshopoz!! @hayestheatre, you never cease to amaze me, please relocate to Brisbane! #hayestheatre #littleshopofhorrors #littleshopoz #feedmeseymour #ayearofmusicals #mentalhealthcopingstrategy (at QPAC – The Playhouse)

Little Shop of Love!

Musical Number 7 was the Little Shop of Horrors! Indulged this afternoon while enjoying the off-Broadway version of a childhood cult classic. Thank you @luckiestproductions, @tinderboxproductions, @estheryeah, @brenthill and the cast/crew of @littleshopoz for putting on a slick, fun, sassy, creative and crazy production! What a talented team! I would seriously recommend seeing it – you will be fed by all the laughs, all the talent, all the puppetry and all the kinds of (good) messed up!

#littleshopoz #ayearofmusicals #feedme #hayestheatre #seymore #littleshopofterror #audrey2 #skidrow (at QPAC – The Playhouse)

We’re All In This Together

I received some snail mail yesterday – an actual letter of the fun kind. It was such a joy to find it in my letter box, open and read it! A dear friend, a sister in Christ and chronic illness sent it from Sydney. We bonded during my gluten, dairy, and soy free diet trial; she was such an encouragement and had wealth of knowledge to make it a bit easier. When I opened the letter, I found “Chronic Illness Achievement” magnets. I was reminded that despite the pain, fatigue and headspins, I got out of bed, was kind and gentle with myself and I survived the day! It’s made this current, trifecta of a flare up just a little bit easier.

There are so many things about having an illness that is so hard, sucky and unfair. Yesterday I was reminded of one of the blessings – the community, solidarity, friendship and mutual support that can only come from shared experiences. It sucks that we have to go through the trails that we do, but at least we aren’t alone.

Sometimes I feel like I’m a member of some exclusive clubs:

When you can relate to people who also feel alone and misunderstood, no words can describe the relief and gratitude. While I was attending pain clinic, I made some beautiful friends whoes lives had been impacted in a similar way to me. One of the most significant and helpful parts of the program were these relationships. While I was in Lismore, I participated in a 12 step program where I found mutual support and understanding from others with mental illness. I made more more progress after 12 months of mutual help then I did with six years of one on one therapy. And last month I organised a met up with three other women who have Endo and living in Brisbane – we spent nearly 3 hours sharing our struggles and most of that time we were in laughter as we told our horror stories that no one else understands. Some of my closest friendships grew because we share pain, emotional and physical and had experienced the life-altering impacts it had on our lives.

I need to thank a zillion people for being on my support team – but this is my thank you to the many friends who have been able to encourage and support me as we have learnt to live with chronic illnesses. Thank you for being honest and vulnerable. Thank you for sharing and listening. Thank you for supporting me and letting me help you. Thank you for showing me I wasn’t alone when my feelings were telling me otherwise. Thank you for praying with me and for me. Thank you for your kind words and genuinely checking in when you were barely functioning yourself. Thank you for teaching me self-care and compassion. Thank you for pointing me to Jesus so that I could rely on God, rather than my weaknesses. Thank you for being a mirror so that I could see reality more clearly.

Remember, we are not alone and to believe that you are completely isolated is a lie from the enemy. You have me and have millions of others who, even though their individual experiences may be different, understand. They want to support you the way others have supported them and social media has made connecting and networking with people so much easier – especially the days you struggle to get out of bed!

My prayer is that you will find the courage, energy, and spoons needed to meet others who ‘get it and are also trying to manage their illnesses one step at a time. Feel free to send me a message – I’m an extrovert, so I love conversations and if I’m not well enough to chat today, I will tomorrow.

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…and even though we may not be able to physically dance like the wildcats, we’re all in this together.

To My Newly Separated Self After My Illness Led to Divorce

Writing this was emotional and cathartic. Not yet had the guts to post this on personal pages – maybe one day.

To My Newly Separated Self After My Illness Led to Divorce

Two and a half years later, I’ve written the letter I wish I could have read when my marriage ended because of my chronic illnesses.

To my newly separated self,

It’s over. It’s actually over. The person you loved the most has gone. Your best friend abandoned you. The person who made you a lifelong promise of commitment “for better and for worse… in sickness and in health” in front of your friends and family has walked away. No more cuddles, no more sweet texts, no more dinner dates… just — gone.

Yes, it is unfair, and it is scary. I know you’re heartbroken, hurting, ashamed and grieving. I can still remember feeling as if my heart was being ripped out through my stomach. I know you’re hurt, scared of judgment and being alone…

… but please give yourself space to grieve. You had already lost so much, your body, your mind, your dreams for the future and now your partner. Loss of any kind is difficult to deal with, so allow yourself to grieve. Cry, binge on Netflix, burn your photos, buy some new clothes, change your hair, eat liters of ice cream, absorb yourself in a book or visit your best mate — do whatever you need to do to process the reality that the relationship is over. The only wrong way to mourn is to deny yourself of the right and necessity to grieve.

Know that your spouse wasn’t rejecting you, they were trying to escape the illness. I don’t say this to justify the broken promises, nor devalue your pain. I say it to discourage self-blame, self-hate guilt and shame, because it is not your fault. You didn’t get to choose to be healthy, but your spouse chose not to love you unconditionally or honor their commitment.

Please don’t isolate yourself — you are not alone. Many relationships in which one partner has a chronic illness break down. It feels easier to stay in bed and not face the world, but there are people in your life who care about you and want to offer support. Yes, yes, some people will always be ignorant, but many will surprise you, and you can learn to ignore the ignorance. Besides, those who have dismissed your illness in the past may finally understand how it has infiltrated every part of your life.

Allow others to show you compassion and how valuable you are. It will help fight against and disprove the lies that you are unlovable, worthless, damaged goods or alone. It will reflect how resilient you have become. When people reach out, don’t send them away and when people feel far away, ask for support.

Learn to accept and forgive. Unfortunately, we live in a broken world inhabited with broken people that have broken relationships. This sad reality means forgiveness is necessary, unless you desire to grow bitter. The spiritual and emotional freedom that comes from forgiveness will help you accept your new life and grieve. Forgiveness, freedom and acceptance are far better than being consumed by hatred.

So don’t lose hope. Instead, share your pain, fears, tears, tissues, Netflix subscription, and tubs Ben and Jerry’s. Remember to say to yourself, “I have a restored relationship with the powerful creator of the universe, and his faith gives me tangible hope. I am loved and resilient. It’s OK to grieve. I can forgive and persevere.”

Besides, now that you’re single, you no longer have to consider someone else in most decisions you make or shave your legs every week. You can eat the food you want, spend more time with friends, choose the TV channel and work toward regaining your independence. 

Know that you have the strength to grieve your previous life and accept this new one. Keep trucking on.

With care, compassion, empathy and love,

Your divorced self.

P.S. I don’t recommend looking at wedding photos too much — it’s not a fun time!