Magdalene Needs Surgery (Part Deux!)

Dear Lovely Ones,

Our loving, funny, clever, vivacious Magdalene needs your help. The last 2 years have been a difficult build-up of pain for our beloved friend. She and her medical community have been puzzling it out, but the upshot is this: Magdalene is facing a complicated sequence of critical surgeries including:

These surgeries will be performed by two surgeons who specialize in excision of endometriosis and will occur this Monday the 16th. Any amount you can give will be helpful to cover the medical costs, as well as the anticipated 2-3 months of painful recovery that will prevent her from working, which is a bit tricky after missing most of November and December due to these pernicious symptoms. Sheesh.

(I am trying to be funny by holding up one sign that says, "Mad Gallbladder" with an arrow pointing to the grumpy flippin' thing. And a second sign that says, "Endo Excision Ouch! Ouch!" That one has my bowel and band-aids. Heh. I mean the whole thing has been a bit spirit-crushing, so I resort to these kinds of high-jinx so as not to crumble beneath the nearly unbearable accumulation of it all. Therefore, you get this silliness! ~M) [OH! Whoops! I forgot those pesky and Endo-ridden ovaries. Poor things.]

(Here are the other two "artful" signs I decided to make this afternoon, which are completely illegible in the picture. -M)

(Anyway, let's get back to Talia's beautifully paced letter that I am messing up with my "witty" interjections. Wow! It must feel like you are in a normal conversation with me! :D ~M)

She benefitted from your amazing generosity in 2018 for endometriosis excision. However: it turns out not all of the endometriosis was removed (Wha!?!? Believe me, no one was more surprised than Magdalene when she found out this year, 4 years after the original surgery), and more has grown, this time to stage 4, threatening complications to internal organs. (Read below for info and great resources on Endo, which are nasty little things that cause big-time pain and consequences.)

And the gallbladder, well, that's just bonus pain heaped upon our friend. The timing just super sucks, and she has really been having a pretty rough go of things.

Ever the optimist, ever the light in the darkest of places, our Magdalene is keeping her chin up as best she can. When she got the dual diagnosis, she laughed through the pain, "Gotta Laugh or you'll cry, right?!" (you can hear her saying this, can't you?).

What is even more remarkable/frustrating is that in response to the chronic pain she has endured for so many years, she has been experiencing a complex neurological response called Functional Neurological Disfunction (FND). If you want to read more about FND, you can do so below. The appearance of FND in her life has been even more debilitating than the pain in many ways. Her ultimate hope is that by alleviating the sources of pain (misbehaving gallbladder and persistent endometriosis), her FND symptoms will also subside.

(When my FND symptoms first appeared, I had to go to the ER 4 times within 10 days. I was not treated very well. It was scary, and because of COVID, I was alone. The simplest way to think about FND is that the symptoms mimic MS and Parkinson's without causing any damage to the hardware of the brain. It's a glitch in the software of the brain that causes me to occasionally have seizures. Fun times.~M)

It's unbelievably unfair what she has had to endure. Re-reading her incredible GoFundMe story from 2018 about her endometriosis, it's bittersweet to see all the hopes she had for a pain-free, fully mobile future. Her hope remains undiminished that she can return to the normalities of her life in Port Townsend. And even go beyond normalities, to as she says, "cavort with, and make into being; the wonderous, the magical, and the mysteriously beautiful creations that are just waiting to BECOME!" And you just know she'll want us to join her!

So, this is the official unveiling of her motto for the new year: PAIN-FREE IN '23!! (and as she says, "You know it's gotta work because it rhymes! )

~The above was written by my dearest Talia Tittlefitz. Thank you Love. I am indebted to you! 

____________________________________________________

(Three very important and fearsome trolls)

MAGDALENE SHARES HER FEELINGS ABOUT YOU (Didn't expect that did ya?)

And so, herein ends the lovely letter that Talia wrote on my behalf after I came to her in tears and completely blocked about what to do and how to do it. It is HARD to ask for help in this way, to be so vulnerable, to be so needy, to be so ill. So thank you dearest one, without you and your help I'm not sure if this much-needed ask for financial help would have happened at all.

I really don't know what I have done in life to have lucked into such beautiful and kind friends. I look around me and am amazed by your talents, the communities and families and organizations that you build around you and all that you cultivate within. I am honestly the luckiest person.

And, AND! My goodness, this summer, fall, and winter, I have needed so much help, and at every turn, I have been met with kindness and care. Multiple friends opened their homes to me when I needed a place to stay for doctor's appointments or when I needed care because I was in a major FND episode. For that matter my mom dropped everything and transformed my grinchy apartment into a very Merry Who-ville just in time for Christmas and then proceeded to bake me the most delicious of my favorite dishes, ensuring I was well cared for in every respect through the New Year as we ramp up to the surgery on Monday. And speaking of delicious, multiple friends dropped off Thanksgiving feasts for me when I was quarantined alone with RSV for the holiday and feeling very sorry for myself indeed. Friends have helped me with finding joy and magic (especially my friends who are younger than 9 years old) and quite honestly, I think that this might be the most important of all. Other friends have read to me when my FND eyes refused to focus on page or screen. Oh! The list goes on and on. Kindnesses, large and small.

(The very talented book reader alouder Brooke)

That has been the hardest part of this whole experience with FND in particular. I had not realized how much of my identity was connected to my sense of independence. I was used to pushing through pain and working through the pain. I had also become, I thought, comfortable with a certain level of vulnerability. But FND was something else all together. It was my first true experience as an adult with dependence. There is no "pushing through" a seizure let me tell you. And so vulnerability with dependence was a very challenging emotional experience. And yet, and yet. You, my Loveliest Ones, my dearest friends, helped me through. I am so grateful. And you may be reading this and thinking, well she isn't talking about me. But don't be so sure. One word of kindness. One post or reply that brightened a tough moment. One smile behind the mask, or in passing. Sometimes, that is the difference between a day that you stay in the boat, or a day that you are treading water. So, I do mean you. Thank you, friend.

And so I wonder again, whatever did I do to deserve such friends? Perhaps something in a previous life? Or in a future one!? But there you go, one of life's mysteries. Another is, "why is Magdalene so ever-lovin' LONG winded? Whelp. Dunno. Just lucky I guess. :D (This is what I believe what they refer to as foreshadowing, read on if you dare.)

EDUCATIONAL CONTENT WARNING

(Young Magdalene (AKA Magi) Teaching in Shanghai, China (Guest Teacher was Talia who was visiting!)

And now we finally get to commence with the EDUCATIONAL component of this li'l ditty. YES!!!! Below you will find a LOT of info about Endo and then below that you will find some good stuff about FND too (because it refuses to be ignored! [I have tried]).

Now, my friend, if you have already met your educational enrichment credits for the week, you may stop here guilt free (Honestly, you did good.) I love you and thank you for being in my life. Now go forth and prosper and feel the kiss January on your face!

However, if you would like to understand more about what I am going through. Or if you know someone with unresolved Pelvic Pain or something that might be like FND, read on and share this page so that we can save others from the pits of despair, or even worse R.O.U.S's (Rodents of Unusual Size)

This educational and resource-sharing part is actually as important to me as asking for your help. (Which is VERY important to me!) This journey with both Endo and FND has been so painful. Both have involved so much medical gaslighting, which is enabled because good information is hard to find as a patient.

It is REALLY overwhelming to be constantly googling into the wee hours. You'd be surprised by the combinations that sometimes finally yield the study or article that means you can go to your doctor and get a referral. I can't tell you how many research studies I have read or lectures I have watched or read the transcript for. More recently, I have unhappily been learning how to research if a past surgeon has ever lost their license or lost a malpractice suit...

So, it's important to me to take the time to collect a bunch of my research about both of these wierdo diseases that most of my doctors have not been trained in (or heard of) and share it with you here.

I am hoping that perhaps someone reading this might be helped, or might know someone who might be helped by these resources. I know from experience how isolating it is to be in severe pain (Endo) or seizures (FND) and have doctors gaslight you as was the case for me this summer with FND. In June I was left for 7 hours in an ER cubicle, while actively seizing, alone, without so much as an offer of water. It was very scary. (That was actually that ER selfie picture above).

Soooo, if you are wondering, "Can I share this with a friend even if neither of us is going to donate? Yes! Please do! The reason I am including this looong explanation and all these links is so that hopefully at least one other person will be spared maybe just even one extra day, but no dammit, let's hope for more! Let's save someone a year, no, let's save someone a DECADE of pain! Yeah! Share it, baby! Share it!

(ok, here we go!)

ENDOMETRIOSIS (ENDO) LINKS AND OTHER INTERESTING STUFF

What is Endo?

What are the symptoms of endometriosis?

Less common symptoms

If I want to learn more about Endometriosis where should I look? Sounds simple, yeah? Nope!

Because there is so much bad data and misinformation out there you have to be very careful where you go to learn about Endometriosis. Just because it’s on CNN or a celebrity is talking about it doesn’t mean it is accurate. This stems from Dr. Sampson who published a bad study in 1925 that has provided the basis for all Endometriosis training for American doctors since then, to this day. For this reason, you cannot simply Google Endometriosis or look it up on WebMD and trust the answer.

It wasn’t until 1991 when Dr. Redwine began to study Endometriosis and train using new theories and techniques that things began to shift and we began to see successful treatment of Endometriosis. Even though excision (surgically removing) is the only successful cure for Endo, it has been a very slow process to correct the misinformation and faulty training. That is why, on average, most women wait 10 years (!) for a correct diagnosis. That is 10 years of seeking medical care, 10 years of bad surgeries (sometimes in the double digits, sometimes removing perfectly good organs), and 10 years of medical gaslighting.

Specifically: the bad study that Dr. Sampson published in 1925 (which has since been successfully refuted, multiple times) stated that Endometriosis was created through something he called reverse menstruation. Again this is the bad data, the disproven study, the wrong theory. Wrong. (I stress this here because many Endo doctors still tell their patients that this is true and then create treatment plans based on this dangerous and disproven theory, hurting their patients in irreversible ways.)

Dr. Sampson believed that cells that belonged in the uterus somehow were flowing backward out of the uterus and into the abdominal cavity. Because this theory was accepted wholesale by the American Surgical Board, doctors believed that Endo cells were simply out-of-place uterine cells and that once cut off from a source of estrogen then the Endo would be cured. Thus we saw the rise of several very harmful practices of “curing” Endometriosis with pregnancy, hysterectomy or very strong hormones. All of these are incorrect. These treatments failed: failed many, many women.

Because Endometriosis cells create their own estrogen, it doesn’t matter if you get pregnant or even remove the entire uterus and ovaries, the Endo is still there and has its own estrogen and so continues to be painful and the disease continues to grow.

Let’s repeat that for clarity:

Anyone whose doctor recommends anything but excision for Endo, please seek a second opinion from a vetted Endo Specialist (you can find a great list of vetted doctors, in the US and beyond, in the Nancy's Nook or icarebetter links below.)

RESOURCES

Read below for some good sources to learn more about Endometriosis (and to perhaps help yourself or someone in your life to finally find relief from the damaging symptoms of Endometriosis:

Nancy’s Nook: Endometriosis Education, created by Nancy Petersen, R.N. who trained and worked with Dr. Redwine as well as suffered from Endometriosis. Nancy's nook is my favorite Endo resource BY FAR. I prefer the Facebook group. I learn a lot from the posts and comments. It isn't a support group but truly an education group. Many endo surgeons and healthcare providers are part of the groups and there are sometimes very interesting Q & A sessions. I HIGHLY recommend it for anyone with endo. There is also a website now as well which is useful as well, in particular, to share with family and with healthcare providers (!)

Facebook group: https://www.facebook.com/groups/418136991574617/

Website: https://nancysnookendo.com/

There is also another condition called Adenomyosis, similar to Endometriosis, which infiltrates the walls of the uterus. Although it is a different disease from Endometriosis it does often co-present with Endo so it may be worth checking it out as well: https://www.facebook.com/groups/AdenomyosisSupport/

iCareBetter (https://icarebetter.com/) is a platform dedicated to providing Endometriosis patients with access to doctors. All doctors listed in our directory have been verified by our expert panel for excision surgery for Endometriosis.

Endometriosis Research Center (https://www.endocenter.org/do-you-have-endo/) overview of endometriosis

Center for Endometriosis Care ( http://centerforendo.com/endometriosis-understanding-a-complex-disease) deep dive into endometriosis: Endometriosis: A complex disease

The Endometriosis Summit (https://www.theendometriosissummit.com/ ): The Endometriosis Summit’s aim is to “stop the minimization, myths, and misinformation to change endometriosis for everyone. The Endometriosis Summit’s Annual Town Meeting joins patients and practitioners on even footing to learn from each other without facades.”

• Blog posts on numerous topics of interest to individuals with endometriosis, their families/friends, and providers

• Video conferences with some of the top experts and thinkers in endometriosis care moderated by Dr. Sallie Sarrel https://www.facebook.com/The-Endometriosis-Summit-Patient-Practitioner-Town-Meeting-1456981957765827/

EndoWhat? (https://www.endowhat.com/ ): EndoWhat is a groundbreaking, bi-partisan movement dedicated to educating and empowering people with endometriosis while informing healthcare providers and policymakers and holding decision-makers accountable.

• Designed to share with healthcare providers https://www.endowhat.org/healthcare-providers

• Award-winning documentary about endometriosis

• School nurse educational program

Endopaedia (http://endopaedia.info/redwine.html ) is a comprehensive, online resource on the origin, diagnosis, and optimal management of endometriosis, and represents the life’s work of world-renowned endometriosis excision surgeon and gynecologist, Dr. David B. Redwine, M.D.

Center for Endometriosis Care Resource Library http://centerforendo.com/endometriosis-understanding-a-complex-disease)

in depth information on a wide variety of topics for patients, caregivers, and healthcare professionals

Neuropelvicology

https://blog.possover.com/en/neuropelveology/neuropelveological-approach-to-pathologies-of-the-pelvic-nerves

Dr. Marc Possover’s work “Neuropelveology is an emerging discipline focusing on the pathologies of the pelvic nervous system on a cross-disciplinary basis

FUNCTIONAL NEUROLOGICAL DISORDER (FND) (Finally, shesh):

A simple 30-second video explains basically what FND is:

Neurosymptoms.org (https://www.neurosymptoms.org/en/) is the best link for understanding FND. It's also the website my Neurologists send me to for treatment ideas and to better understand the disorder. (This is a little understood condition and so most providers are not trained as specialists in FND.) This site was created by the world's preeminent FND researcher and practitioner Dr. Jon Stone, a Neurologist out of Scotland.

FNDhope.org (https://fndhope.org/) This site is run by patients and has good supporting information to what you will find on neurosymptoms.org. It is honestly a bit easier to wrap your head around, and a good companion piece to help someone begin to understand FND and that everyone has different symptoms and different triggers. My trigger is pain. Someone else's might be catching a cold. Or an allergic reaction like hay fever. Or PTSD related.

Here is the link to the FB FND support group (https://www.facebook.com/groups/functionalneurologicaldisorder/?ref=share&mibextid=NSMWBT) but I would caution anyone suffering with FND to be careful before joining, because, It's THE MOST DEPRESSING place ever. It's full of lots of really good caring people experiencing shitty, scary, and debilitating FND symptoms while simultaneously getting gaslit by their doctors. Fun. Fun. Fun.

Now! Because we CANNOT end on this sour note, let's look at this silliness and chant the refrain PAIN-FREE in 23!!

(Yes! Okay! We got that excited about 1978's sleeper hit Ice Castles, about a blind figure skater who finds love and her way back onto the ice! I mean! What more can you ask for. Right Susy Ingrao?)

Good luck and good health to all!