Endo Warriors At The Coast

If you are tired, learn to rest, not quit.

2019 has had more water breaks than sprints and dashes, but in the quiet moments, I have recharged and found new strength.

One of the ideas that was born in the extended water break was ‘Endo warriors at the Coast’, an idea that I have dabbled with and shelved many times over the years. But, when the time is right, things align, and ideas are actualized. Lives are changed.

Without a doubt, I am convinced that angels exist, that God sends divine helpers to hold our hands, provide solutions and remind us of His steadfast presence.

On 10th November we had our first support group meeting. Days later, my heart is still full. Full of joy, peace, hope and expectation. A group of 10 ladies assembled as strangers, and left three and half hours later, refreshed, and with a larger network of women in Mombasa.

We had an interactive session where we shared our journeys, talked about menstruation, menstrual hygiene products, and the herbs and products that are easily available in Mombasa. It was insightful, informative and refreshing.

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Freedom for Girls donated a pack of reusable pads and liners for each lady. We left with both our hearts and hands full.

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Shufaa shared a video with snippets of the event on her YouTube channel. You see what I meant about angels?

A huge thank-you to everyone who came and made this day possible.

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We have some upcoming events:

26th January 2019 – Endo warriors support meet up

23rd March 2019 – Endometriosis Awareness Event – Mombasa Edition

Details will follow. If you would like to learn more, or even plug in, please drop me a line on yellowendoflower@gmail.com.

Our individual voices may be faint, but together we are an army of warriors, creating a beautiful symphony, that will be heard.

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What To Pack in Your Hospital Bag Before Surgery

I went for my first surgery dressed in jeans. It was a day surgery, needless to say, that was a horrible idea. Dressing up afterward was not easy, my bladder was sore and my urethra was upset that a catheter had gone visiting, yet there I was trying to keep up with fashion and fit into a snug pair of jeans while anesthesia coursed through my veins. For another one of my surgeries, I wore a loose dress but I over packed and looked like I would be staying at the hospital for several weeks.

Five surgeries later, I have narrowed the contents of my bag down to necessities and comfort. Before I pack it, I ask myself is it necessary? Will it make me feel more comfortable?

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Here are a few items that make it into my bag:

For the hospital stay

  • Surgery documents, pre-authorization forms if you need them
  • A packet of pads or panty liners in case you bleed post-op
  • Toiletries (toothpaste, toothbrush, flannel, shower gel/soap, lip balm, lotion, comb/brush )
  • Wet wipes to freshen up
  • Low waist or high rising underwear ( granny panties) that don’t touch the incision scars, and are easy to wear and remove
  • Comfortable bra preferably without an underwire
  • Shoes that are easy to slip on like sandals so you don’t have to bend
  • Entertainment: colors and coloring book, a book to read, music/ podcasts to listen to
  • Sweater and socks if you feel cold
  • A blankie / Maasai blanket
  • Phone and charger
  • A notebook – note down any questions you have that you want to ask the doctor before the surgery and any questions you want to ask during your post operation review. Also, you can write down the side effects of drugs to look out for when you go home.
  • Snacks – if you carry any, make sure that they do not cause bloating

For the journey home

  • Comfortable clothes to leave the hospital – yoga pants or a maxi dress
  • A pillow
  • Something to fold and put between you and the safety belt.

Confirm what your hospital gives you so that you decide if you need to add items onto this list.

As you plan for the surgery, I pray that you will experience God’s peace and that His joy will be your strength. May you know that He is right there with you through it all.

Deuteronomy 31:8 New International Version (NIV)

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Is there something that you packed and was a lifesaver, that you’d like to share with other endo warriors? Please leave a comment below.

 

 

When Healing Was An Idol

I idolized healing.

It was the destination, my checkbox before I could be happy, better yet, live my life. It was the proverbial ‘GO’ in Monopoly that I needed to pass before I could get $200. It was exactly what I lived for. What I craved. What I needed.

Then it didn’t happen.

Needless to say, I was crushed. Life came to a standstill, but it’s not exactly like it was moving, remember it was standing still because I was waiting for a miracle. As I stood, the clock kept ticking and tocking, and time, precious time, kept going. My dreams, those that were time sensitive, well they just fizzled out, others became forgotten and life went as it may.

#Mybestlifenow was not a hashtag I would have used, #survivor #barelysurviving were more apt for any post that I would make. Nothing was happening, well a lot was happening, I was sinking into a hole, frustrated that I was not moving forward.

It was a hard place to be.

One day I saw the light, I realized that healing may not be a destination. I took control of what I could control and started making small steps, taking responsibility for my happiness.

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God has brought me a long way, and I am not where I used to be. Now I am making the most of what I have in my hands. I may not choose my cards, but I can choose to have joy. As I have obeyed, the healing has come. This time it is not the focus, it is not an idol.

Here’s to choosing joy, remaining obedient, shining your light, keeping hope alive and keeping God at His rightful place.

Endometriosis and Mental Health

One of the areas that Endometriosis affects women in a great way is in mental health. Endo warriors fight many psychological battles. These have to do with living with chronic pain and reduced effectiveness, infertility, miscarriages, missed opportunities especially career wise, relationship issues sometimes leading to divorce, body image concerns such as weight gain or scarring from numerous surgeries, mood problems caused by hormones gone berserk or by some of the treatments we get to manage the condition. The list is endless.

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Endo Warriors find that these issues sometimes leave them in a dilemma regarding their identity. Wondering “who am I?” A mum in waiting? The sickly one? The divorcee? The fat one?

Generally, people tend to answer the identity question – who am I – with roles we play such as: I am a wife/ mother of two/ nurse/ divorcee/ the clown in the family. But is that really who we are? The problem with these descriptions is that they are all determined externally and could change any moment. The wife can become widowed or divorced, while the divorcee can get remarried. This is bound to create an identity crisis every time there is a change. Secondly, these roles come with society’s perception and expectation of how they should be played. This can also create disillusionment when we try to do things differently from the norm and the society rejects it. For example, in many of our African societies remarriage of a woman is still frowned upon even following the death of her husband.

So, what if we looked at our identity from a more intrinsic perspective? That instead of waiting for society to tell us who we are, we look inward and see what we are made of – those things that we have control over. Identify ourselves by such things as our values, our thoughts and beliefs, our likes and dislikes. For example, even though the society may mount undue pressure on an Endo Warrior married for a number of years but still trusting God for her miracle baby, she can still walk with her head held up high telling herself that her value as a person is not dependent on being a biological parent.

To achieve this level of self-awareness and confidence, our beliefs play a big role. Our thoughts and beliefs are the lenses through which we interpret the world They affect how we feel and act. Negative thought patterns will certainly make us feel sad, depressed, frustrated, overwhelmed and are likely to make us act irrationally. Some Endo Warriors end up giving in to negative thought patterns and end up feeling overwhelmed while others in the same boat rise above the struggles and end up excelling in their spaces of influence.

One healthy habit that Endo Warriors need to cultivate is guarding their thoughts. This needs to be a daily intentional action. Eventually this forms a habit and it becomes more natural to think rationally. Some of the ways to achieve this is through:

  1. Scheduling some down time – Incorporate quiet time as part of daily routine. Even better if this period includes spiritual nourishment like some uplifting worship music.
  2. Differentiate between what you have control over and what you do not – change whatever needs to be changed and quit worrying about what is not in your power to do so.
  3. Be kind to yourself – Acknowledge the struggles and respect the limitations that come with endo. Remember you never wished this on yourself – you just happen to be one of 176 million strong soldiers worldwide on this assignment.
  4. Self-Awareness – Begin to be aware of when your thoughts start to spiral down the abyss, then stop them. One trick of stopping these thought is to have a rubber band around the wrist. Each time you find yourself thinking negative thoughts, snap the rubber band and the slight pain usually jolts one to the present moment and away from the unhelpful thoughts. Try it!

Faith Osiro first shared this with Endo warriors at the March 2018 Endometriosisis Foundation of Kenya Endomarch event. She is a counsellor based in Nairobi. If you would like to get in touch with her, please reach her on 0737 861671.

The Endo Blues ~ Battling With Depression

I thought I was losing my mind. Instead of feeling better after the laparoscopic surgery I was feeling worse. Granted there was no pain in my abdomen, but I felt like a sedated prisoner in my own body. I desperately wanted to fight, but I was often too tired or sleepy and disinterested.

Getting out of bed was difficult, leaving the house felt impossible. I remember I would cut two pieces of paper, write ‘Yes’ on one of them and ‘No’ on the other and then pick one with my eyes closed. As I picked, I prayed that I would pick a ‘No’ so that I wouldn’t have to leave the house. Sometimes the voice inside overrode the ‘Yes’ I had picked and I would stay at home.

I was depressed, and I had no idea.

The hormonal treatment to treat Endo combined with Endo had hurled me into a dark corner, burdened my shoulders and I was forced to surrender. There was no happiness. There was no joy. Laughter was a mystery. I dragged my feet as I walked, and wondered why the nights were so short. I slept but never felt energized, and desperately wished that this aspect could manifest itself physically.

My doctor was only looking out for the physical implications of the disease. Not once did he ever ask how I was doing, psychologically and emotionally. Perhaps it wasn’t his place, but he could have brought someone to the table to shed some light on that aspect.

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I was nineteen and lost at the big blue sea. I was drowning on dry land. I was fighting phsycially and paddling to stay alive. I hated it. I cried bitter tears, if we wrung my pillow we’d fill a bucket or two.

I felt alone.

I was told to pray, and I prayed. The blues, well, they remained, the dark shades made way for the lighter hues. And as time went by, I begun to see the sun in my sky. I begun to feel the warmth of it’s rays on my skin. I knew that I would be okay.

My heart goes out to Endo warriors who are grappling with this darkness. You are not alone. You do not have to walk alone. If you would like to talk to a professional please call Faith on 0737861671. She has graciously agreed to help Endo warriors navigate these choppy waters at a discounted rate.

You can reach me via yellowendoflower@gmail.com

You are not alone.

 

31 Days Of Endo ~ Unsilenced

Day 22

Individual’s stories are like dominoes, they look small, but they have the power to start a revolution and change the status quo.

Two years ago, Arti Shah, resolved to tell the story of Endo warriors living in Kenya. At the time, I had come to Nairobi for the annual Endometriosis of Kenya event.

This documentary is a beautiful symphony of voices that were once stifled and muffled by pain, despair, and shame. Arti has beautifully put them together and presents the trailer of Unsilenced.

One day Endometriosis will be a household name. Please watch and share.

 

#31 Days Of Endo ~ Amina Mohammed

Day 2 of the awareness month 🙂 I hope you are all keeping well.
Our second Endo warrior is the graceful Amina Mohammed.  I met Amina for the first time late last year during a Yellow Endo Flower meet up. She is a sweet spirited fighter.20180302_142504_0001
My name is Amina, I am 27 years old and an early years teacher. Working with kids and being near the sea bring me joy.
Where it all began
My periods started when I was 12 years old. From the first day I had painful cramps which were accompanied by throwing up and a running stomach.
I remember being house bound for the first couple of days of my cycle because of the pain. I always had an old bucket for throwing up next to me, when it got too much, I just camped in the bathroom, with the cold floor easing my pain. All this time I knew that periods are painful and what I was going through was normal.
In primary school, I heard a story that gave me some hope; people said that if you have painful periods, when it’s time to give birth your labour process will be painless.
When I was 19, I started getting constant sharp, stabbing pains in my abdomen, that’s when I knew something was wrong. I was referred to a gynae and she sent me for a scan and when the results came out she told me I had Adenomyosis and that I would have to be put in to early menopause. Imagine the trauma my 19 year old self felt, the first time I go to a gynae and she says I have a strange sounding disease and the treatment is menopause!
After a while I decided to seek a second opinion and that’s when I was diagnosed with Endometriosis. The new doctor explained it well and I had my laparoscopy  where he found many endo lesions on the left side of my pelvic wall. The recovery went well until I started Zoladex injections, the side effects were awful: hot flushes, mood swings, and depression. Eventually I finished the treatment and I finally got some relief.
The thief within
Endometriosis has stolen my energy and I am constantly fatigued to the point that I have to force myself to get out of bed.
Alone
Endo made me feel so alone because I felt that no one understood what I was going through. Fortunately, last year I found a very supportive group of ladies in Endo Sisters East Africa. It was such a relief to finally meet people who understand endo and get me.
My struggles
I also struggle with bloating when I eat the wrong things, recently I bumped into a person I had not seen in years and they thought I was pregnant.
I am working on the endo diet, I’ve given up dairy and red meat but my biggest struggle is wheat – I just can’t seem to give up bread and chapati.
My lessons
I’ve learnt that no matter what, somehow I can get through the pain and dark times. It’s also really comforting to know that I am not alone, a support group is really important. Something that I learnt from you is to be my biggest advocate, that is still a work in progress but it is awesome advice.
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My favourite flower is a rose because I believe that the thorns represent the struggles we go through and despite the thorns, the rose still blooms and becomes beautiful.
Thank you for sharing your story with us, Amina. Keep fighting and inspiring.
You can read the first story in this series here.

Endo Prayers: I Need You

Dear Lord,

I need you.

There are so many things that I could say, but my words fail me. The weight of my heart is weighing me down. The words unspoken, sap my strength. You see the cries of my heart even before I mouth them. You know all things, you see all things, you are able to do ALL things.

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Lord, I ask you to help me feel you even in this state of being overwhelmed. As I feel like it’s me against the world: I stare at the pain, hospital bills, the societal expectations, my own expectations of myself and I feel weak. Unable to move.

You see the battle within, the fight of my life to try and stay afloat when I feel like a boulder in the deep, wallowing in the blues.

Wrap me in your arms. Remind me of your promises. Speak to me again.

Help those who feel like me, help them know that they are not alone.

In Jesus name, I pray and believe,

Amen

 

Energy Forecasting With Endometriosis

There are days I have the energy to change the world and other days that I want to put the world on pause and sleep. The latter is especially when Aunty Flo is in town. I usually have no motivation to do anything. I just want to sleep, but life, oh life must go on.

Fatigue is like a leech that sucks the life out of you. Sometimes I think that I am draining more than just blood; my mental energy is usually at an all-time low, and the desire to do things that I normally would is at zero.

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One day in December I woke up running on reserves and on that day a simple thing like wearing earrings felt like so much work. A few years ago, this would have seemed so strange and out of character for me, now it is (almost) a non-issue. After I had children, I stopped wearing small earrings, to reduce the items that they could choke on, I miss how light and pretty they were. Now, when I do wear earrings, I wear big ones, that tend to make me feel like I am lifting weights using my earlobes. God forbid they get stuck on something, or better still, my Ky yanks them.

As I am more self-aware and seeing the pattern in my life, I am learning to plan ahead and forecast my energy. There are days that I have energy coursing through my veins and those are the days that I write books and put things in order, and there are other days that I have to access my reserves to try and make it through the day. Especially when Auntie Flo is in town, she has a way of depleting my energy even before it comes to the surface.

My energy graph would be high when I am not on my period or close to my period and (almost) non-existent when I am on my period. During those days I only do what is absolutely necessary, the funnel I use to decide is pretty small, so doing my hair and wearing earrings seem like too much work.

For these days I plan ahead to have help, especially with the girls, I sleep, oh, I sleep, this is my current symptom of Endometriosis, a wave of sleep that will not go until I enter bed for a couple of hours. I (try to) eat well, so as to keep my energy up and avoid constipation, Auntie Flo and constipation make for a horrible duo. I do my hair a few days before to avoid walking around looking like I came in to close contact with high voltage and wear simple outfits that do not need matching or ironing, long live dresses. I think about my meal plan in advance, otherwise, we will eat the same thing every day, because the energy is limited to surviving. Anything that needs order and analytical skills is avoided during this time.

I am grateful for a good support system, my husband and daughters are so understanding when it comes to these couple of days. I desire to increase my energy levels so that is a work in progress, but good planning is definately working in my favor.