Tag: endo

The Why of Bloging

Leave a comment

This post was originally posted as “The Why”  page on WordPress

Since I’ve started writing more regularly, I’ve been asking myself, Why?

Why Blog? Why share my life? Why talk about super personal stuff? Why do I want people to read my stories? Why publish my thoughts online for anyone to read? Why bother?

The writer of Ecclesiastes sums it up perfectly in verse two, “Meaningless! Meaningless!” says the Teacher.“Utterly meaningless! Everything is meaningless.”

Without God, everything is meaningless. Without a greater plan and purpose, my life is in vain. This truth has greater weight within the context of the suffering and pain I’ve experienced daily for over 15 years, courtesy of Severs Disease, Chronic Depression, Anxiety, PCOS, Endometriosis, Regional Complex Pain Syndrome and various forms/degrees of abuse. My goal in blogging is not to play the victim, nor is it to insight a pitiful ‘woe is Alex’ response – it is simply to help me comprehend and convey my reality – my life.

Surely, there is a purpose. Surely, these icky circumstances can be used for good. Surely, this pain isn’t going to end merely with just being eaten by worms. Surely there is something bigger at play. There just has to be.

One of my beautiful friends recently said to me, “although I don’t have the same beliefs, I truly believe you would be dead if it weren’t for your faith in God.” She is right. If this is all for nothing, if it is all in vain, why endure this pain any longer than I have to?

Faith.

Romans 8:28-30 – And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many
brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.

I believe this is not ‘it’. I believe in the ultimate glorification of Jesus, my Lord, and Saviour. I believe my creator can use any and all situations for good. I have hope, tangible hope that the choices I make today on earth have eternal consequences and hope that ‘this’ isn’t all there is. I eagerly look forward to the day my soul will rest with my creator, and I will be perfectly healed. There will be no more sickness, no more sadness, no more selfishness and ultimately, no more sin.

My fundamental goal in life is to use what God has given me to bring glory to Him. ‘What God has given me’ includes spiritual gifts and blessings, talents, passions, revelation, wisdom, and life experience. My desire is to use these as gifts as tools to help build God’s Kingdom, but it has taken a long time to see my life experience as a good thing.

I want to share my story because it’s a story of hope. In an individualistic society, we can be surrounded by hundreds of people and still feel alone. This feeling is often compounded when isolation increases due to chronic illness. I want you to know you are not alone. There are other people who ‘get it’ and you shouldn’t be afraid, to be honest. Most people live in ignorance, but if you can be encouraged to be truthful, there is a strong chance understanding can lead to empathy.

As Christians we are called to love – love God and love each other. God, throughout most of Biblical history, has told His people to show compassion and look after the sick and vulnerable. I truly believe that genuinely listening to someone evolves into compassionate understanding and awareness which then leads to supporting and loving that person.

This is the motivation to be as honest as I possibly can because I know I am not alone. I know too many women who want their horrible periods to be validated. I know too many people who isolate themselves due to depression. I know too many individuals who struggle to get out of bed because they’re in great pain. If you can understand someone’s illness even a smidgen more, you demonstrate love to them.

Imagine being able to tell someone ‘you matter to me because you matter to God’ by simply listening to them. Imagine being the first person to express ‘I believe your pain is real, I know you’re not faking it.’ Imagine being able to show people what Jesus is like by being more aware of how to support someone in a practical and helpful way. Unfortunately, we cannot read minds, which is why educating yourself and learning how people are affected by adversity can show true empathy, compassion, and love. I know when I hear someone mention an illness they have I want to find out as much information as I can. I feel like I can better support them if I understand them, even if it’s just a little bit.

2 Corinthians 12:9 – But he [The Lord] said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

I am weak. I am flawed. I have blemishes. I am far from perfect. I had the opportunity to have my blog, The Five Stages of Endometriosis shared by a few different groups. One of them was Endo Active, who, even after their edit left this part in, “I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. God has sustained, challenged and strengthened me. I praise Him every day for giving me His Spirit, Jesus sacrifice, and Gods love. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation.” Had I not openly shared my story and my life in such a raw and honest way, I would have not had the opportunity to proclaim Christ, my true hope. When I [admit my faults, my failings, my struggle and] decrease, He increases.

Endo Bloat

6 Comments

So, in the last 3 months I’ve lost 11kgs. The doctors have been telling me for years that losing weight would make me feel much better. In a way they were right, it does feel nice putting on clothes that are now too big. It’s nice looking at my body and seeing that it’s smaller… but it’s made me feel worse about my endo.

11kgs ago, sure, I’d feel nauseous and bloated, but now I can SEE the bloat and can feel how swollen it is when I push on my tummy. Wearing pants and a seatbelt makes it worse. I didn’t realise I could feel more uncomfortable. It is actually really distressing.

I think I would almost rather be fat.

You’re *so* Lucky

Leave a comment

Have you ever had the ‘joy’ of experiencing a conversation similar to this on a Sunday afternoon?
“What time do you start work tomorrow?”
“Ummm, I don’t work on Mondays.”
“ahhh, you’re so lucky!”

I lost count of the number of times I’ve had similar conversations. I understand that for most people not having to work on a Monday would be a gift, a luxury. But I don’t work Mondays, nor Wednesdays, Thursdays or Saturdays. Even the days I do work are only half days. I know many people would love to work only three days a week, but not me.

Many chronic illnesses can cause chronic fatigue, pain, vertigo, nausea, migraines, weak bladder or bowel, overwhelming sadness, debilitating anxiety, low immunity and muscle weakness. On top of the symptoms there is often pharmaceutical side effects; drowsiness, memory loss, reduced cognitive ability, excessive sweating, insomnia, anxiety, nausea, trouble breathing and heart palpitations, just to name a few.

If these symptoms and side effects can impact one’s ability to complete the simplest, everyday tasks, how much more can it minimise one’s capacity to maintain employment. If you have severe, chronic back pain, both manual labor and sitting for extended periods of time are not possible. If you have muscle weakness, you lose your ability to lift and hold things. If you’re always tired, your concentration lapses and therefore, productivity reduces. If you’re symptoms are sporadic, you may feel fine at 7 am, but by the time you leave for work an hour later you simply can’t. You have to call in sick last minute.

Personally, if I work more much more than 15 hours a week, my ability to do housework, study, exercise, cook healthily, socialise and participate in leisure activities decreases dramatically. Even then, 15 hours of work does not provide the income needed to live in Australia. Imagine adding the costs of doctors visits, tests, alternate therapies and medications to an already stretched budget. I can’t begin to imagine what I’d do with a full-time income.

I can only dream of a day when I may be able to have sustainable full-time work. If you have the capacity to a maintain full-time job and have managed to be employed full-time (which isn’t easy in itself), *you* are the lucky one. My full-time job is staying healthy and looking after my body. I don’t get paid for that. There is no financial gain. Instead, my job success relies on hiring a team of people to help and support me. It’s not cheap!

So, next time you are tempted to tell someone who doesn’t work full-time that they’re lucky because they don’t have to go into the office tomorrow, reconsider. Yes, maybe they do have the best job in the world, but maybe, just maybe, they don’t feel lucky. Maybe they would do almost anything to switch bodies and jobs with you because you are the lucky one.

You’re *so* lucky!

Leave a comment

Have you ever had the ‘joy’ of experiencing a conversation similar to this on a Sunday afternoon?
“What time do you start work tomorrow?”
“Ummm, I don’t work on Mondays.”
“ahhh, you’re so lucky!”

I lost count of the number of times I’ve had similar conversations. I understand that for most people not having to work on a Monday would be a gift, a luxury. But I don’t work Mondays, nor Wednesdays, Thursdays or Saturdays. Even the days I do work are only half days. I know many people would love to work only three days a week, but not me.

Many chronic illnesses can cause chronic fatigue, pain, vertigo, nausea, migraines, weak bladder or bowel, overwhelming sadness, debilitating anxiety, low immunity and muscle weakness. On top of the symptoms there is often pharmaceutical side effects; drowsiness, memory loss, reduced cognitive ability, excessive sweating, insomnia, anxiety, nausea, trouble breathing and heart palpitations, just to name a few.

If these symptoms and side effects can impact one’s ability to complete the simplest, everyday tasks, how much more can it minimise one’s capacity to maintain employment. If you have severe, chronic back pain, both manual labor and sitting for extended periods of time are not possible. If you have muscle weakness, you lose your ability to lift and hold things. If you’re always tired, your concentration lapses and therefore, productivity reduces. If you’re symptoms are sporadic, you may feel fine at 7 am, but by the time you leave for work an hour later you simply can’t. You have to call in sick last minute.

Personally, if I work more much more than 15 hours a week, my ability to do housework, study, exercise, cook healthily, socialise and participate in leisure activities decreases dramatically. Even then, 15 hours of work does not provide the income needed to live in Australia. Imagine adding the costs of doctors visits, tests, alternate therapies and medications to an already stretched budget. I can’t begin to imagine what I’d do with a full-time income.

I can only dream of a day when I may be able to have sustainable full-time work. If you have the capacity to a maintain full-time job and have managed to be employed full-time (which isn’t easy in itself), *you* are the lucky one. My full-time job is staying healthy and looking after my body. I don’t get paid for that. There is no financial gain. Instead, my job success relies on hiring a team of people to help and support me. It’s not cheap!

So, next time you are tempted to tell someone who doesn’t work full-time that they’re lucky because they don’t have to go into the office tomorrow, reconsider. Yes, maybe they do have the best job in the world, but maybe, just maybe, they don’t feel lucky. Maybe they would do almost anything to switch bodies and jobs with you because you are the lucky one.

Already… but not yet!

Leave a comment

The beauty when your devotion is exactly what you needed to read. When my body is sore, fighting infections & extremely fatigued and all I can manage to do lay down but can’t seem to fall asleep. So grateful for the reminder that I live in the era of “already… but not yet!” Every day I am alive I can sing God’s praises while I await for my new creation body! #endo #spoonie #faith #comelordjesus #patience #sleep #keeptruckingon #cartwheelsinheaven

5 Stages of Endo*

3 Comments

                                                                             *Not scientifically proven. 

‘Uterus.’ There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. 

Awkward.  

These words are often avoided. They’re not ‘kosher’ and they make people cringe. Slipping them into a conversation causes tension and awkward-turtles, but if I keep my mouth shut and stay silent, society remains ignorant.

For me, these ‘uncomfortable’ words are normal topics of conversation. Conversations that cost hundreds of dollars and occur during painful, exposing, vulnerable, demoralising and uncomfortable ‘internal examinations’ that make a pap smear feel like a stroll in the park. Conversations with a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, urination, contraception, pregnancy, PMS, weight, fractured relationships and mental illness… Oh, did I mention these ‘chats’ are with complete strangers? Unfortunately, when you’re chronically ill, second, third and even twelfth opinions are often necessary.

Ironically, I have found conversations about Jesus, faith, religion and politics are easier than talking about a disease that affects the reproductive organs of 1 in 10 females worldwide.

Stage 1: Faking it 

Courtesy of PCOS, acne sprouted when I was 11 and once puberty kicked in, my face resembled a pepperoni pizza. At 15 I started taking Roaccutane – a potent pharmaceutical to treat cystic acne. Falling pregnant while taking Roaccutane guarantees a deformed foetus, so the dermatologist refused to prescribe it unless I also took the pill (which never made sense as I wasn’t sexually active).

Within a few months, the chronic abdominal pain started. The result: x-rays, ultrasounds, specialists, painkillers, frequent school absences and a colonoscopy. Diagnosis: psycho-sematic pain. It was all in my head. Treatment: psychology and cease taking Roaccutane. I was a perfectionist with anxiety falling behind at school and an extrovert isolated from the world. Rumour was that Alex was “faking it” and it wasn’t long before I started to spiral into a dark, damp hole I couldn’t escape. I was in pain all the time and there was no physiological cause. I never finished the course of Roaccutane and I stopped taking the pill. A few months later the pain resolved, but ovulation and menstruation had became hell. No one suspected a gynaecological condition or that ‘the pill’ was the culprit.

Stage 2: Diagnostic Conundrum

Fast-forward 5 years: the pain returned less than three months after my wedding (and four months of hormonal contraception). I took over three months sick leave and deferred my third semester at college. Again: scans, ultrasounds, blood tests, specialists, painkillers, weight gain, isolation. Again: no answers. I was a ‘diagnostic conundrum.’  

Stage 3: Diagnosis

An ovarian cyst eventually showed up on an ultrasound, so I booked in for a cystectomy. After six months on the surgical waiting list the cyst resolved itself. Instead, I had a diagnostic laparoscopy (keyhole surgery of the pelvis) where the gyno found endometriosis, a tissue similar to the lining of the uterus found outside the womb. Turns out I also have PCOS. Unfortunately, treatment did not stop the pain, but I had a name! Oh, the relief and closure. A diagnosis meant I wasn’t crazy! 

There were legitimate medical reasons for the constant pain, chronic fatigue, cramping, nausea and bloating. I finally understood why I had persistent acne, headaches, heavy periods, skin tags, difficulty losing weight, erratic mood swings, a dodgy immune system and pain during urination, bowel movements and sex.

Stage 4: Grief

What followed was a three-year process of watching all I deeply valued in this world fall away. I lost control of body; my nervous system was overworked and my mind was dulled with painkillers. The depression worsened and my financial security vanished. I had to leave my amazing job and eventually my marriage completely dissolved. I left the life I had built in the city to return to my hometown, move into my Aunt’s granny flat and share a bed with my mum. (I actually have no idea how I would have survived without such an amazing family!)

I ceased being an independent adult. I was 24, divorced, obese, unemployed, severely depressed, unable to exercise or even stand for more than a few minutes, incapable of doing my own laundry (and most other housework), living on frozen meals, dropping and breaking my valuables, constantly losing stuff and sharing a bedroom with my mother. I was like a dependant child, living in a dark, damp pit with no exit plan. I had such regular appointment, my GP became like a best friend.

By society’s standards I was a complete failure, Darwinism says I should have died years ago. I spent five years grieving the death of my dreams, goals and hopes I had for my life because there is no cure for endometriosis. 

Stage 5: Acceptance and Healing

I never stopped fighting for my health. After ten years of symptoms and five and a half years of non-stop pain, by the grace of God, the severity of my symptoms decreased. 

It took:

  • permission and space to grieve,
  • three surgeries,
  • trialling Visanne,
  • thousands of dollars in (conventional and alternative) specialist fee’s,
  • a willingness and determination to try almost any treatment options
  • improving my mental health,
  • forming emotional and medical support teams,
  • being active in the endometriosis community and sisterhood, 
  • taking the opportunity to participate in the documentary “Endo & Us,”
  • engaging with endometriosis creatively by expressing myself through photography, art, music and writing (click here to hear a song I wrote),
  • 100% dedication to an intensive chronic pain program,
  • taking the initiative,ignoring ignorance, never giving up,
  • and finding faith, hope and acceptance to finally be ‘okay.’

Sure, I still feel uncomfortable, bloated and nauseous. I cramp regularly and remain tired and in pain 99% of the time. But my flare-ups are shorter, less intense and not as frequent because I no longer react emotionally to the symptoms. Acceptance has led to spiritual, emotional and physical healing. I can now do basic housework, cook, socialise and exercise. I have a fulfilling part-time job, started losing weight, travelled, stood in the middle of a mosh pit and started my Masters degree.

I smile and laugh now because through the pain, the fight, the sleepless nights, the isolation and rejection, the lies, the heartbreak and the suffering my faith has developed. God never ceases to sustain, challenge and strengthen me as I eagerly wait for my restored, New Creation body that will no longer be plagued by endometriosis, PCOS or depression. Chronic pain has helped me find tangible hope and now my faith is solely in God, His holy and never-changing character and His perfect plan.
It saddens me that ten years from the onset of symptoms to a diagnosis and recovery is common but it will only change when we ‘end the silence.’

So for the sake of 178 million women around the world, I will fight, advocate and educate for increases awareness, research and a cure. I will continue to engage in awkward conversations on behalf of other adolescent girls and adult women who are being told the same thing in 2016 – “there is nothing wrong with you. It’s all in your head.”

So, this is me – Alex. I have endometriosis, it doesn’t define me, but it has changed me and taught me to be bold. I had endo removed from my rectum and cervix. My uterus aches, my ovaries have cysts, my cervix cramps, urinating hurts and my period sucks.

Now your turn – go on! Say it, just once. I dare you. ‘yoo-ter-uhs’…

…see, it’s not that scary 😉

Side Note: Through all these stages, I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. I praise God every day for Jesus sacrifice, the Fathers love and the Holy Spirit’s power to transform my heart and heal my body. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation. 

Meet My Uterus

Leave a comment

Wanna see my uterus? I am learning to love the body God gave me, despite the illnesses… besides, who doesn’t love cuddling a soft, squishy pink toy? #endometriosis #endthesilence #endo #endoactive #keeptruckingon #endoawareness #endoaustralia