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.
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.
The Endometriosis Family Support Group hosted a free webinar on Wednesday, March 20, 2019, at 4:00pm (PST) featuring a discussion with Dr. Aykut Bayrak with LA IVF. He discussed 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.
If you missed the live broadcast, here’s the recording!
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!
I created a Facebook frame thingy!! If you’d like one, just go to your profile on the Facebook app and tap “Edit” on your profile picture. Then tap “Add Frame”. Do a search for Endometriosis Awareness Bloomin and search for the frame by Bloomin’ Uterus
And yes, that is my face covered in a charcoal mud mask holding my demonic cat whom we love (and fear) dearly ❤
March 16, 2019; the screening will begin at 1:00p.m. UC San Diego Skaggs School of Pharmacy & Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. There will be free parking on the campus.
Endometriosis or “endo” is the most common, devastating disease that most people have never heard of. It affects 1 in 10 girls and women. That’s approximately 176,000,000 people on the planet.
Despite its prevalence, women see an average of 8 doctors for 10 years before diagnosis. During that time, many are forced to miss school, leave careers they love, abandon dreams of having children and watch their personal relationships suffer. They’re often told incorrectly by doctors that pregnancy & hysterectomy are cures and that pain is normal or in their heads. After diagnosis, they’re usually prescribed an array of drugs & undergo multiple, ineffective surgeries.
It’s time to break that cycle. It’s time for a new normal that doesn’t mean multiple doctors, drugs, surgeries, misdiagnoses and years of pain. The only film of its kind, Endo What? gives an accurate, up-to-date base of knowledge straight from the experts.
It’s a film to educate & put power where it belongs – in the hands of girls & women.
Where: UC San Diego Skaggs School of Pharmacy and Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. Follow the stairs outside the building down to the lower level.
Parking: There will be free parking available at the parking structure in the blue-highlighted area:
I’d like to extend a HUGE thank you to Dr. Sally Rafie and Sister Donatella Soul for all of their hard work in helping me bring this event to the San Diego community.