Slightely Maggie: Recent Episodes
Maggie Slighte
Maggie shares what it is like navigating the world as a slighte-ly mentally and physically disabled creator.
Maggie shares her experiences of Ehlers-Danlos Syndromes awareness month and how her dissociative identity disorder alters are preparing for their first season of Pride in almost ten years. Processing leaving the Mormon church and how that is affecting her views about Pride this year.
In a long-awaited update, Maggie shares what it is like to time share one body with over 100 personalities.
So many changes coming down the line, I don't even know where to start! Join me on Friday 3/18 for a big surprise!
Maggie rants about her ROHO cushion and NuMotion and shares her recipe for Berry Sweet and Sour sauce as well as her adventures with her new KAFOs. She is also asking for input on her hair!
Maggie describes the paradigm she is in with The Church of Jesus Christ of Latter-day Saints after almost 9 years of membership and then gives health advocacy updates about her KAFOs and sleep study. Hear about her adventures with developing recipes for these last two weeks and how they relate to a jam jar and a can of cider!
Maggie starts a new format, recording on video as well as audio. Simultaneously publishing on YouTube for accessibility and to enable her audience to check out visual elements. Added to advocacy updates is a recipe Maggie developed this week: Air-fried Mushrooms.
In the season 2 opener, Maggie catches everyone up on her ongoing projects and the accident from July in Paratransit as well as what happened with Strangers No More.
In this episode of Slightely Maggie, Maggie anticipates her full September of Self Advocacy work ahead, as well as reflecting on her social life, 100% on social media.
In the longest episode yet, Maggie explores her recent self-advocacy work, exposes an accident that happened on Paratransit and gives some tips on being a good advocate for yourself.
Maggie starts sharing about her health situation, but quickly gets distracted into POTS and Long COVID.
Maggie wrote a quick poem about the goals she has, then she shares a dream she is working towards. All inquiries are welcome in making that dream come true.
For day 22 of MyEDSChallenge, a social media challenge that has been exhausting, Maggie shares her most vulnerable and proudest moment.
Ehlers-Danlos Syndrome awareness month day 18 asks for advice to parents. Here's Maggie's.
Before I go too far, let me preface this. Unlike some of my articles that have been extensively researched, this one is primarily based on my personal experience and theories.
I started out this world in 1966 in the home of two brand new parents. I confused them from the beginning.
Baby me
Immediately, I pushed away the cuddles that were given to newborn me. I refused touch that was not on my terms.
I wouldn’t discover for 54 years that this was a sign that I was neurodivergent.
It made for a difficult beginning of a relationship with both of my parents. As a parent now and grandparent, I understand how confusing that must have been. When my own children displayed a myriad of actions that weren’t described in the parenting manuals, I was confused as well.
Me (age 17) and my first son
My father responded by sexualizing his infant child, and that created a slew of mental illness that I still live with today.
I disconnected from him for the good of my mental health at age 18, only to discover he chose to end his life 15 years later without reconciliation.
My father, Ronald Slighte, 1968ish
I entered therapy at age 13 and have continued on and off for over 40 years since.
This last month, I acquired a few more diagnoses from the psychologist I’ve been working with for years, that help to give perspective to so many of my own actions as a young adult.
It has taken those four decades to be diagnosed with Major Depressive Disorder (MDD) (age 13), Generalized Anxiety Disorder (GAD) (age 14), ADHD (age 26), PTSD (chronic) (age 33), DID (age 49), Autism Spectrum Disorder (ASD, Neurodivergence) (age 54), Sensory Processing Disorder (SPD) (age 54), and Obsessive Compulsive Disorder (OCD) (age 54).
It took over 30 years of misdiagnosis to discover I was a multiple. It took over 40 years to realize I was neurodivergent because I have a vagina.
Something is inherently wrong with this.
Although I’ve listed the alphabet soup of my diagnoses above, a few of them (autism & ADHD in particular) are more neurodivergences, that is, differences in the way my brain has operated since before birth, than disorders. The disorder and disability comes when I’m trying to grow up, live and communicate in a world that is designed for neurotypical people.
As more neurodivergent engineers and advocates come into our own, I hope the world will become more inclusive and our differences will disable us less and less.
I question if I would have ever been a parent at all, if I had not been highly sexualized as a child by my father. I hope I would have, because I do love my children and grandchildren.
As an multiple neurodivergent adult, I am on a mission to inform and educate the world about neurodivergence, autism, DID, ADHD, sensory processing disorder and Ehlers-Danlos Syndrome. At least the education I can perform by being open and aware of not only my disorders, but their effects on others.
My brain is bendy. As bendy as my body. As my body has stiffened up with age, my brain is also finding stability with assistance.
I can only hope and pray that others are able to find help before they hurt those people they love the most.
A Balm for the Bruises & Bends:
Managing My Ehlers-Danlos with Cannabis
I have made no secret of the fact that I endure a considerable amount of pain in relation to my Ehlers-Danlos Syndrome and the subsequent antibiotic injury.
How do I manage my Ehlers-Danlos?
That was a question, posed as a prompt for day six of Ehlers-Danlos Syndrome Awareness month.
Day Seven (today) is “comfort.”
Maggic Cookies!
How DO I manage my symptoms and how do I find comfort in the face of so much pain?
Photo by Steve Elliott
When I began pondering that question, I was reminded of severe gastroparesis episodes that resulted in POTS and passing out on the bathroom floor in the early 2000s.
I remember praying.
Yes, God is and always will be the primary go-to advisor for all of my needs-medical included.
At the time, I was not a member of any church. God would steer me that direction later. But I was using cannabis occasionally for breakthrough pain.
I was being prescribed fentanyl and percocet, but the pain was ALWAYS breaking through.
There were so many things in the years between 2002 and 2007 that I didn’t know, but what I DID understand was the cannabis I used when nothing else helped, actually DID help me.
Cannabis eased my pain, and it eased my brain.
Although I wouldn’t be given a diagnosis of autism spectrum disorder until 2021, the cannabis I used for my pain in 2005 also seemed to sooth my brain in ways I couldn’t describe.
It wasn’t the “high.” To be honest, now that side effect is long in the distance, it is the balanced effect the various cannabinoids provide that makes me able to be productive at all.
The cannabinoids I intake on a daily basis, through various means also reduce my inflammation levels and ease my nausea associated with my gastroparesis and GERD from my EDS.
I’ve shared the recipe I base my capsules on.
Grandma Cat’s FECO drops are the essential ingredient!
My FECO for my capsules and salve is sourced from a dear advocate and friend, Grandma Cat. I know I can rely on the medicine I get from her, and she allowed me to try a formulation with high CBG for an amazing boost of pain relief, even in the face of two severely injured hands!
I’ve linked Grandma Cat’s site here for more information about her amazing herbs.
My comorbidities with Ehlers-Danlos might keep some from understanding how much cannabis assists me in the management of the congenital condition, but Ehlers-Danlos Syndrome effects EVERY part of my body.
My connective tissues are the building blocks for all of my pieces of my body, so the pain and injuries can be diffuse throughout.
I thought it was time I’d share a another recipe that I use for my personal use.
I’ve given out many tins of salve over the holidays, but for others, I do leave out one ingredient: Cannabis.
Here is the recipe if you’d like to make some for your own comfort!
Maggic Muscle Salve
2 ounces of beeswax pellets
4 ounces Coconut oil
1 ounce Jojoba oil
1 ounce Hempseed oil
1 ounce apricot kernel oil
1 ounce Grapeseed oil
1 ounce each Calendula and Arnica infused oil or 5 drops of extract (available online or at herbal health stores locally)
5 drops each of peppermint, eucalyptus, and rosemary essential oils, and 4 drops of tea tree oil)
10 drops of high CBD or 1:1 FECO drops
Melt beeswax pellets over a double boiler.
Remove from heat.
Immediately add oils and gently stir. Melting and combining completely.
Add essential oils.
Pour into tins and allow to cool before adding the lid.
There you have it!!
Use sparingly as needed in good health!
I hope you find some comfort and ease for whatever that ails you today!
Love and Lighte
She wheeled out of the doctor’s office with the paper on her lap. Tears clouded the words on the page.
A 53-year-old woman now, it was a certain vindication she felt looking at the words: “Ehlers-Danlos Syndrome.”
Finally, a diagnosis.
Ehlers-Danlos Syndrome isn’t a fun malady or a coveted disease, and there are no treatments or cures, but it was an answer.
For most of her life, she had experienced pain. Pain that other people said couldn’t exist.
They would qualify their comments, saying they weren’t calling her a liar. But she remembers looking up in a dictionary the word “hypochondriac” when she overheard it being used concerning her medical issues.
Several times during her adult life, when abdominal or pelvic pain got too bad, she took to bed for months and years at a time. The depression that would follow was often blamed for the bedriddenness, but it was never the source.
The pain was.
Pain in her joints, including her ribs that seemed to be taken out of place with a simple wrong movement in bed, impeding her ability to breathe for weeks.
Pain in her abdomen, feeling like her vital organs were going to fall right out of her body.
Then they did.
Days after her third child was born, when Maggie was a mere 23 years old, some could say a baby herself: She gave birth to her uterus in a hospital bathroom.
It was six more months before the surgery to repair it was complete.
She was left barren.
Digestive issues from low motility and IBS in her 20s grew to a mysterious malady called biliary dyskinesia, with tremendous abdominal pain leading to numerous hospitalizations and more surgeries.
A horrendous stomach ache that never went away.
Bladder dysfunctions transformed into diagnoses that were as difficult to understand as they were to pronounce: Interstitial cystitis. Urethrocele. Rectocele. Vulvodynia.
Everything hurts, and she always has to go.
Unable to work through the pain, she retired on disability.
Allergies worsening, living in a car, she was plagued by pansinusitis.
Self-care came up empty. In an attempt to cure, she is prescribed Levofloxacin and prednisone.
Within hours, she journals as she sits in a tub, her first in 4,000 miles of living in a van,
“I can’t move. Everything hurts.”
Two more prescriptions for the same drugs are swallowed before the fourth doctor realizes she had been complaining of pain since the first pills.
No one admits culpability.
The tendons on the bottom of her feet burn like fire with every step from the moment they hit the floor in the morning. She cries in her doctor’s office. The nurse practitioner laughs.
For months her health continues to deteriorate. Unable to tolerate the pain of standing, she stops standing.
Neuropathy follows pain in every tendon in her body. Some parts lose feeling, other pieces of her skin become hypersensitive. Her puppy’s tongue becomes like a knife on her arms.
She cries.
Trips to the bathroom become dangerous, the bottoms of her feet feeling like a mix of broken lego pieces and emptiness.
She falls.
She keeps falling, her body like a ping-pong ball between the narrow hall of her tiny one-bedroom apartment.
She falls in the middle of the floor. Both of her shoulders are injured.
It becomes evident that getting to the bathroom is now impossible without hurting herself.
She humbles herself and asks for help. She waits for months.
A caregiver and powerchair are finally prescribed the day before Maggie’s 52nd birthday.
Months of empowerment follow.
Restored, revitalized, she searches for answers.
Fluoroquinolone Toxicity, a sinister description truncated down into a snide little word, describing a life-affecting medication injury: She was “floxed.”
Wanting justice she searches further.
No attorney is taking the case. The FDA has known for years.
Months go by, a new normal is adjusted to.
An Easter egg in her research nags at her mind.
The connective tissue issues she experienced most of her life weave their way to the front. She asks her doctor a question, that doctor agrees and makes a referral.
The referred doctor requests and tests.
A diagnosis is conveyed.
Finally, after 53 years and 2 months, she holds in her hands a congenital disorder diagnosis. It is diagnosis as old as she is, yet not attributed to her until now.
She is a Zebra. She always had been.
Alone, she cries in vindication and validation.
She isn’t a hypochondriac, she is a zebra.
Maggie explores different signs and symptoms of her own neurodivergence through her early years and why they were ignored.
After lifetimes of confusing medical problems, an answer is now clear for many
“When you hear hoofprints, think horses.”
That is what doctors in training are taught.
Physicians are specifically trained not to think outside of the diagnostic box, then are confused as to why people with rare issues often do not get diagnosed until they have endured a lifetime of medical insults and innuendos questioning their sanity.
Ehlers-Danlos Syndromes (EDS) are zebra disorders. According to The Ehlers-Danlos Society,
“The zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare…When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences.”
(You can watch & listen to me read this to you, & continue below for the rest of the article)
What are Ehlers-Danlos Syndromes?
The Ehlers-Danlos Society describes the Ehlers-Danlos Syndromes as, “A group of connective tissue disorders…generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”
While all zebras stripes are in a different pattern, symptoms that find people seeking help from medical professionals include: Multiple joint hypermobility and instabilities, velvety skin (varies with type of EDS), skin fragility, different types of scarring and easily bruised, slow and poor wound healing and pain (chronic and intractable – imagine feeling your organs being affected by gravity when you stand for long periods of time).
Digestive issues such as gastroparesis, low motility and irritable bowel syndrome can combine with painful bladder conditions like interstitial cystitis to cause incredibly painful “stomach aches” in zebra children.
Chiari malformations in some zebras lead to debilitating headaches and confusing mental situations.
Older zebras, like Connie, a woman finally diagnosed with EDS after six decades and a lifetime of medical maladies, find their diagnosis may come easier once a younger family member is diagnosed, “I first heard about EDS when my granddaughter got her hEDS diagnosis and my daughter said, “Mom, this has to be why you have so many health problems.“
Older patients are not the only ones who can be affected severely by symptoms and comorbidities with EDS.
Discombobulating symptoms of maladies that are common in zebras, such as POTS, or Postural orthostatic tachycardia syndrome and other issues with autonomic systems often require even young patients to require mobility aids.
When the building blocks of your body are missing a critical component, or the parts of your connective tissues are out of balance, the result can be one of over 300 connective tissue disorders. Thirteen of those disorders are Ehlers-Danlos Syndromes.
Types of Ehlers-Danlos Syndromes:
The Ehlers-Danlos Society lists these as the 13 current diagnostic types of Ehlers-Danlos Syndromes:
Classical EDS (cEDS)
Classical-like EDS (clEDS)
Cardiac-valvular EDS (cvEDS)
Vascular EDS (vEDS)
Hypermobile EDS
Arthrochalasia EDS (aEDS)
Dermatosparaxis EDS (dEDS)
Kyphoscoliotic EDS (kEDS)
Brittle Cornea Syndrome (BCS)
Spondylodysplastic EDS (spEDS)
Musculocontractural EDS (mcEDS)
Myopathic EDS (mEDS)
Periodontal EDS (pEDS)
Each type of EDS is characterized by a deficiency in a different component of connective tissue. In twelve of the types, all types except hypermobile, the genetic marker has been identified.
The Ehlers-Danlos Society is currently signing up patients with Ehlers-Danlos Syndromes into a registry partially in an attempt to assist the gene search for the hypermobile genetic link.
EDS has a commonality of between 1 in 5,000 to 1 in 15,000 people. By far, the hypermobile type or hEDS is the most common.
Vascular EDS is one of the most unusual, but also one of the deadliest forms of EDS.
Diagnosis of Ehlers-Danlos Syndromes:
As many zebras shared, diagnosis can take decades. Many times, as with Connie, younger family members are diagnosed first. Younger family members can have access to genetic testing which can diagnose all forms besides hypermobile EDS, but older family members are often denied access to testing.
Each type of EDS has its own diagnostic criteria. Joint hypermobility is judged on a 9-point scale known as the Beighton Scale. The Ehlers-Danlos Society has an extensive chart explaining the types of EDS, their genetic connections, and their individual symptoms.
Sarah Ann, a patient diagnosed at age 48, can trace her symptoms back to age four when her finger hurt when riding a trike. She “gripped the handlebars tighter to pedal faster and suddenly [her] finger hurt and turned bright blue-purple.”
Achenbach syndrome is what Sarah experienced and she contemplates the possible benefits to children if they were administered the Brighten Scale test or another mandatory screening for EDS, “Diagnosis needs to happen at a young age so kids can learn how to get strong and protect themselves as well as learn how to advocate for themselves.”
Being a zebra isn’t all POTS and Achenbach syndrome, people with EDS can be some of the most elegant dancers and amazing contortionists in the world. But those movements come at a cost.
As patients with EDS get older, the party tricks marked by the dislocation and hyperextention of joints can come back to haunt them with excruciating pain.
One of the biggest dangers to an undiagnosed zebra is the possibility of being prescribed an antibiotic in the fluoroquinolone family.
The FDA has warned that not only do Fluoroquinilones cause a greater chance of tendon damage and mental instability in people with connective tissue disorders like EDS and Marfan’s Syndrome, but also death from sudden aortic rupture.
There are studies in the works, and there will no doubt be more coming soon. The best place to keep apprised of the research into Ehlers-Danlos Syndromes is at Ehlers-Danlos Society.
May is Ehlers-Danlos Syndrome awareness month. If one side of your family is extraordinarily bendy, velvety, bruisy, stretchy and outchy, you may want to stroll on over to the Ehlers-Danlos Society and take a look at the lists of symptoms and types of EDS. You may find your family of zebras.
You may be one of the Dazzle.
Although I've known I was neurodivergent for years, having been diagnosed with ADHD in my 30s, I received an additional diagnosis this week I want to share with you.
Stay tuned after Maggie gives the 411 about her most recent injury, for the results from the hearing that inspired this podcast!!
Following up on her "viral video" of a man representing Above and Beyond Auto Care threatening Maggie, she filed a complaint.
She had not heard back about that legal complaint until now.
Hear what the letter said and what that all means in this episode.
Headed to the doctor today to check on some things. I share a few things I learned there. Ehlers-Danlos Syndrome, gastroparesis, and biliary colic are some of the things discussed.
Here's Maggie...or I think I'm Maggie, but there may be a few more personalities sneaking in today! In this podcast, Maggie discusses Dissociative Identity Disorder and sings a little of her other project's song! MyMEsBlog.com is the website for her mental health blog, while you can find a much better version of the song and her other project at Strangers-no-more.com
On the day I was planning to record a video about how excited I am to have my rehabilitative power chair, I was met with professional ableism. I do not abide with shame.
Ever wonder what Maggie Slighte's Sundays look like? Well, here's a great description!!
Looking back at some of my previous life choices over the past few decades, and realizing when I need to request help. And then following up!
Yesterday, I started a podcast. Today, I share some details about some of the things we discussed yesterday!
Maggie Slighte, one of the 4 hosts of the show, "Strangers No More," is venturing out into the wild world of podcasting...here's an introduction as to why.
(Transcript available soon on MaggieSlighte.com)
SMS1E1