You may have seen news articles and press releases flying around the Internet since yesterday regarding a new drug released to manage Endometriosis pain. I wanted to share this with you because, although I’ve no intention of taking the drug myself, I know that it may help women who suffer. And it may help better educate you on your decision.
I’ve been following it for a while and you can read my thoughts about AbbVie’s SpeakEndo commercials and website, as well as their expedited application for FDA approval, and the track records of other drugs that have done the same. And according to Business Insider, Orilissa may cost approximately $850 per month, or roughly $10,000 per year for prescriptions (I’m assuming those figures are calculated without health insurance). Orilissa is estimated to hit markets for prescriptions in August of this year.
I will later give you a full update of my July 18, 2018, surgery and current recovery, but first wanted to share something super important and amazing!
For those of you who may have read the title and thought elephants have Endo, alas, this isn’t that blog – I haven’t done that research yet. But, please keep reading…
My Mum surprised me with a gift after my July 18, 2018, excision surgery: the stuffed elephant pictured above, whom she named Mr. Victorious. 🙂 And inside the bag was this incredible note, that I share today with her blessing:
“Lisa, I was in the gift shop feeling like there was something in there for me to get you. I had no idea what it was…
Until I saw the elephant!
Elephants in areas like Africa when one finally finds water underground will let out a trumpet call that goes out for miles around. The elephants that hear the call come running to where that elephant is and they form a circle. Then they all stay in place and stomp their feet repeatedly. All of a sudden, the water rises to the surface and they are all able to drink.
This elephant reminds me of you and your Endo Sisters.
You let out that call and you and your Sisters found each other.
Someday a cure will rise to the surface and you will all be able to drink.
I love you Lisa.
Pardon me as I, yet again, grab a tissue. It’s true, dear Sisters. We rally together. We are here for one another. Always.
And, Mum, thank you for such a special gift and incredibly touching words. I will cherish your letter, and Mr. Victorious, forever. Gonna go lay back down now and continue to heal up and relax.
Since so many of you Readers are EndoSisters, and you are the strongest women I’ve ever met, this one is for you:
“After you have suffered great losses and known much pain, it is not cowardice to wish to live henceforth with a minimum of suffering. And one form of heroism, about which few if any films will be made, is having the courage to live without bitterness when bitterness is justified, having the strength to persevere even when perseverance seems unlikely to be rewarded, having the resolution to find profound meaning in life when it seems the most meaningless” ― Dean Koontz, The City
You are my heroines. We are Mighty. And we are all in this together.
“Rose of Sharon” was diagnosed when she was 26 years old. Now 44, she comes to us (and you) for help.
Rose of Sharon’s Journey: For 19 years I suffered in silence ’cause no one took my condition seriously not even doctors! I feel as though I was cursed! Can’t keep a relationship, a job & a happy life. Endometriosis stole my entire life!
My third robotic-assisted laparoscopic surgery is now seven days away. As I lay awake in bed last night, my mind wandered to the process: pre-op/intake, placement of the IV, a conversation with my surgeon, trying to wear a brave face as my Mom and husband do the same, the ride down the hallway with the overhead lights (just like in the movies), the surgery room doors opening, and being greeted by staff as they make last-minute preparations for the procedure. Then the moment of being placed on the operating table, getting strapped in, and the anesthesiologist coming to send me off to sleep.
It’s not easy. It’s not a grand adventure. But, partially it IS an adventure: the hope of relief, of a returning quality of life, a possibility of normalcy. But, let’s be honest…it’s terrifying, it’s scary, and it’s going to hurt when you wake up…and the recovery takes weeks just to function; months to feel normal. And for some women: they never get that sense of normalcy.
So, last night as these thoughts tumbled through my brain, I reached my hand out to my husband and laid it on his hip. Before I knew what I was saying, the words “I’m nervous,” gently babbled out of my mouth.
He reached down and stroked my hand with his, then he pulled my hand up to his heart and held it there. I closed my eyes and silently let the tears flow. And he just held my hand firmly against his beating heart. Until I fell asleep.
I love him. So very, very much.
I often get asked, “How does your husband deal with your illness?”
This. This is how.
I don’t know where I would be in this Journey without him.
The Endometriosis Family Support Group is hosting a free webinar on Tuesday, July 17, 2018, at 5:30pm with Dr. Julie Sarton regarding Pelvic Floor Therapy. If interested, please e-mail Megan to register. If you cannot attend on July 17th, we will share the recording once we receive the link.
Coby-Lea was recently diagnosed with Endometriosis at 22 years old. Living in Northern Rivers, New South Wales, she wanted to share her story with others today.
Coby-Lea’s Journey: My story. Coby-Lea, 22 years old, diagnosed with endometriosis. Since I was 13, I’ve struggled with really extreme ‘period pain’ and abnormal cycles. They’d last for nearly 7 days! They’d be heavy. They’d sometimes have some tissue/clotty stuff. I was 13, I didn’t know what to do. Thankfully, my mum took me to the Dr who then put me on the pill to regulate my cycle and hopefully ease the pain. Fast forward 9 years, I cannot take the unbearable pain anymore. I know myself I am not exaggerating every time I say ‘this is the worst pain I’ve ever had!’. And so, this is where it all begins.
Michelle from Virginia was diagnosed with Endometriosis when she was 36. Now a year later, she shares her Endo story with us.
Michelle’s Journey: Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.
In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.
Sorry I’ve been unable to blog lately. I simply haven’t had the time or energy. BUT, it’s Friday. And I’ll always try to make time for Feel Good Fridays! Today’s quote is a doozy and it hit me right in the Feels:
“The storm is out there and every one of us must eventually face the storm. When the storm comes, pray that it will shake you to your roots and break you wide-open. Being broken open by the storm is your only hope. When you are broken open you get to discover for the first time what is inside you. Some people never get to see what is inside them; what beauty, what strength, what truth and love. They were never broken open by the storm. So, don’t run from your pain — run into your pain. Let life’s storm shatter you.” ― Bryant McGill, Simple Reminders: Inspiration for Living Your Best Life
For any of us facing troublesome times, or scary times, or uncertain moments, or trials and tribulations, or even just a moment of sadness…this one is for you. And I. May we hold firm, weather the storm, and pass through it.
Have a wonderful weekend. And I wish you strength and peace. Love, Lisa