I’ve learned of a new study that we EndoWarriors can all pitch in to help. A few students at Cairnmillar Institute in Melbourne, Australia are working on a study regarding the psychological and social impact of Endometriosis in women 18 years old and older.
This surveyshould take around 25 minutes to complete.
If you have any questions or concerns, please contact the study authors by email . They’d be happy to answer any questions or provide additional information. And again, if you’d like to answer a few questions, they’d LOVE your participation and help.
Another week is over. March is half-way through! How are you doing? Good, I hope. Do let me know in the comments below.
Today’s quote is inspired by my week of ups and downs. I’ve been a moody beast, that’s for sure. Lo and behold, my period snuck up on me…I had skipped February and had no clue when I would start this month. Yesterday…I started yesterday 😉 Which explains the nearly week-long ordeal of insane, extreme emotions.
“It takes a lot of time, focus and energy to realize the enormity of being the ocean with your very own tide every month. However, by honoring the demands of bleeding, our blood gives something in return. The crazed bitch from irritation hell recedes. In her place arises a side of ourselves with whom we may not—at first—be comfortable. She is a vulnerable, highly perceptive genius who can ponder a given issue and take her world by storm. When we’re quiet and bleeding, we stumble upon the solutions to dilemmas that’ve been bugging us all month. Inspiration hits and moments of epiphany rumba ‘across de tundra of our senses. In this mode of existence one does not feel antipathy towards a bodily ritual so profoundly and routinely reinforces our cuntpower.” ― Inga Muscio, Cunt: A Declaration of Independence
Embrace your inner You-ness. In all it’s (irritated) glory. I know we gals tend to be on our period in groups. If you’re riding the crimson wave with me today, hold your head up high and know it’ll be over soon. Then…THEN…we get to do it again in 25-30 days!!!
Yesterday a co-host of a local radio show shot me an email – they’d got wind of our upcoming EndoWhat? screening and wanted to throw a few of us on the air to talk about Endometriosis!
Dr. Sally Rafie of The Pharmacists Clinic and myself were interviewed this morning. A HUGE thank you to my work for allowing me to take the time off and be able to make the last minute interview! Fellow EndoWarrior and dear friend, Sister Donatella Soul, of The San Diego Sisters of Perpetual Indulgence also came, but unfortunately they couldn’t accommodate a third participant in the interview. But she was there for HUGE moral support.
Jane Hindmon, the co-host of KPBS Midday Edition conducted a beautiful interview. Dr. Rafie answered the medical questions about the illness and I addressed the symptoms and journeys many of us face. We also had an opportunity to discuss our screening and walk on March 30th.
It was over and done with in about 15 minutes and was an incredible experience! I was nervous, and it likely shows. And I realize in the photographs afterward just how wrinkly my chosen shirt was. Wait, it’s a linen-type fabric. Isn’t it supposed to be wrinkly? And why was I so nervous to be on the radio? I’m on ham radio often enough and NEVER nervous with that. Ramble…oh, dear brain, shut-up. We all did wonderfully!
Ha! But, I am SO grateful to Ms. Hindmon and KPBS for the opportunity. It was a blast being in a radio studio, in front of the big intimidating mics, wearing the earphones, and just talking about an incredibly important topic to so many.
If you’d like to listen to the live broadcast, it will be today at noon Pacific Standard Time. Or you can catch the broadcast later on their webpage.
Tomorrow is The Big Day! Am I worried? Yes. Will I admit it? No. Well, I guess I just did.
I know this day was long in the making. And you nor I are happy to see it come to fruition…
But may this next surgery bring you lasting relief, you brave and strong EndoWarrior.
And may you know you’re in my thoughts. Always.
From one stalker to another: I adore you.
PS – enjoy your bowel prep…
PPS – No need to keep me posted with how you’re doing; you know I’ll already know. Ignore that creaking floorboard at night. Or that heavy breathing in your ear while you sleep. No, you didn’t misplace that hair tie…I have it safe in my pocket for you.
Man, these past two weeks at work have been exhausting. Purely exhausting. It’s been tense, we’re short-staffed at the moment, and it’s full of deadlines. And also getting ready for our upcoming March Endo events is equally poopy-outty. I’m sleeping at night, but don’t feel rested when I wake up.
I’m wiped.
I’m excited about March 16th and March 30th. So, no regrets. But it’s important to realize that when you’ve stretched yourself too thin or have too much on your plate that you MUST focus on some sort of proper rest and relaxation.
Make some “Me” time. Set down everything else. Breathe. Let it all fall away.
So, if you’re like me today and you’ve just reached a point of pure exhaustion, let’s do this together:
“Relaxing the shoulders is vital for relaxation in general. However, owing to the effects of gravity, relaxation is problematic unless we let the shoulders remain in their natural place. Let the shoulders drop, or settle in harmony with gravity, into their most comfortable position. It isn’t too difficult to do this for a moment, but to sustain this condition unconsciously in our lives is another matter. We raise our shoulders unnaturally when we lean on a desk or hold the telephone between our shoulders and ears, when we are shocked by a loud noise, and who knows how many other times throughout the day. And the unsettling of the shoulders doesn’t have to be large to produce anxiety, stiff necks, and headaches. Just slightly raising them will create tension, and this tension throws the nervous system out of balance.
When do we raise the shoulders in daily life? What are we feeling at that moment and leading up to that moment? Remembering that the body reflects the mind, and that the raising of the shoulders not only creates tension but also is a physical manifestation of psychological tension itself, what are the roots of this tension? Bringing the mind into the moment, let’s observe ourselves in a state free of preconceived ideas or beliefs. Don’t guess at these questions. Observe yourself in relationship to others and the universe” ― H.E. Davey, Japanese Yoga: The Way of Dynamic Meditation
It isn’t much. But it’s a little. An easy, non-time consuming, quick way to take a moment, draw a breath, and relax those shoulders.
That’s one step. The rest we’ll find time to relax a step at a time. Sometimes we cannot control our outer-stressors. And deadlines must be met. But today? Today I can do this.
Breathe. And drop my shoulders.
I hope you have a beautiful weekend. And find some time to just relllllaaaaax.
The Endometriosis Family Support Group is hosting a free webinar on Wednesday, March 20, 2019, at 4:00pm (PST) featuring a discussion with Dr. Aykut Bayrak with LA IVF. He will be discussing Endometriosis diagnosis and treatment options. If interested, please e-mail Megan at megan@RMCcharity.org to register. If you cannot attend on March 20th, we will share the recording once we receive the link.
What IS Endometriosis? Insane growths inside the body that cause pain and scar tissue. Nobody knows the cause. There is no cure. There is no easy test to diagnose it. There is no easy pill to swallow for treatment. And most doctors don’t understand it or follow the gold standard for treatment: well-trained excision surgery.
It can be debilitatingly painful. It can grow on organs all over the body. It can pull those organs out of place or weave them together. Many women have it in their lungs and suffer collapsed lungs every month because of it. It can affect nerves like the sciatic or pudendal nerve, or others. It can cause bowel obstructions, renal blockages, digestion problems, infertility, and more. And that doesn’t even cover the emotional effects of this illness. Suicide is not uncommon in our community.
And what works treatment-wise for one person may not work for the next. It is an Individual disease. Hand-tailored to each person who suffers with it. Each treatment course and response is as individual a journey as our diagnoses.
This illness doesn’t discriminate for age, race, or sex. Mostly women have it, but there are rare cases of men developing Endometriosis. It’s estimated 176 million worldwide have it. That’s 1 in 10. And it can take many years, or even a few decades, before a diagnosis is obtained.
Learn the symptoms. Be aware. Listen. And don’t be afraid to talk about it. With anyone.
February has ended! And I’m tickled pink with my body’s progress. I’ve learned that I had to distinguish between discomfort and pain…Why? Because it’s not all pain anymore.
Discomfort, to me, means it can pass quickly, or doesn’t warrant a pain pill. It’s not debilitating. It’s like an annoyance or inconvenience.
Pain, on the other hand, strips me of my focus, causes me alarm, roots me to my place, takes away my abilities, causes me to cry out, or curl into a little ball.
I also didn’t need any form of pain killers in February (I know you’re screaming with excitement and clapping your hands as you read this, Mom) – and I skipped my period. Okay, body. What are you up to?
If you’re curious in my progress as February progressed, here are my notes on my diet, symptoms, and pain/discomfort levels and locations.
And if you’re curious and following the progress of my bowels…here’s my poop chart!!!
Being able to compare my poopy chart to my pain tracker has been a godsend! I realize the days that I have pain are usually spurred by my diet choices the day before. And the two days I didn’t poop? One was by choice! I was staying with friends in a tiny hotel room and didn’t want to stink the place up – but my pride caused a painful poop-episode the next day. The second episode of No-Poop? I had pooped SO VERY MUCH the day before that I think my body needed a whole day to recharge! Ha! Diarrhea is usually also a cause of my over-eating. So, little by little, these little visual aids are going to help me reel in my newly-discovered dietary limitations and habits. I can’t believe I’m pooping one to five times a day. That’s unheard of for the Before-Bowel-Resection me. It’s my life now, though.
February was a good month. And I’m looking forward to tracking March!
