Tag: EDS

The “EDS ninja.”

~ El ~ Leave a comment

I am a middle aged, engaged female who was born crippled. Amazingly adaptable and resilient, it wasn’t even known I was disabled until I reached my 30s. This is essentially the reason behind the name “EDS ninja:”

All of my life I’ve had to use my intellect to modify my surroundings to work for me and use items to help me do so. Sometimes, I’ve even had to modify myself… mainly with the way I think.

I spend 98% of my days on a couch or in bed and need a wheelchair to get around for any distance as my bones no longer want to even support my body. I’m currently recovering from stress fractures on my left tibia and fibula and it’s not pleasurable, but it’s my life. And, what I deal with makes me strong at a level able bodied folks can’t attain (nor understand 😆)… it isn’t a curse of God, some punishment for some misdeed, nor am I a malingerer… I was simply born with a LOT of mutated DNA.

My soon to be husband and I are about to move to our first homestead. I’ve done quite a lot of things in regards to that lifestyle before, so I know what it entails, but I’m looking forward to it. I’ll enjoy doing the “impossible” not in spite, but because I already know I got this.

A new decade.

~ El ~ Leave a comment

Rebirth is the starting point of healing. 2020 ushers in for me a new era of beginning and 2019 saw the move that made my rebirth come about. I’ve learned a lot in the last year, much less decade. To be honest, I was quite lost and still have hard moments but I learned to slow down and pay attention.

That includes paying attention to a lot of things. In my body, in the behaviors and actions of others, in my surroundings. Paying attention keeps saving my life too. I feel like perhaps I was such a high speed, high strung, obstinate person that my health decline has been happening with the purpose TO slow me down.

Even when I was able bodied I had a gait issue I had to train myself out of at an early age, dancing helped with that as did gymnastics. I’ve been in a self internalized denial most of my life, which at my middle age isn’t something I take lightly. The older I get, the more I realize I sure can and have done some spectacularly DUMB shit 🤣

The loss of the things I was able to do actually does get easier on me as time passes. I modify how I get around myself or the things around me to assist in getting around and it works just fine for me. I’ve had to retrain myself how to write by hand and some other daily tasks others take for granted. I just don’t see the fact that I’m crippled makes me flawed. I’m not flawed. I work with my body and surroundings intellectually. I mean, we all make mistakes and poor choices as we’re all human beings after all. Why should anyone with disabilities be considered imperfect? I suppose that’s something that bothers me as I hear a lot I am too young or too nice looking to “be so sick.” It is what it is.

Modern day calamity.

~ El ~ Leave a comment

I introduced D to the Deadwood series and movie over the last few days. He loved it as much as I do and now we’re doing Hell on Wheels in between football. I may or may not be mildly obsessed with the wild west 😏

I always wanted the life of an adventuring homesteader and you know what? I’m not going to let being severely physically disabled stop me either. I finally have the support, the means, an amazingly like-minded fiancee, and am moving to super rural mountainous Southwest Colorado so now is as good a time as any. I don’t fit in with everyone and their modern consumerism, to say the least.

It’s not going to be anything easy but nothing in my life ever has been and in my experience of it, the best things are worth working and or waiting for. Pretty sure some folks will follow me along (as they do on Facebook) to “see me fail” but to that I say; have fun waiting for that!

Spending the rest of my day in bed with cervicocranial instability symptoms, been a rough day and I’m going to attempt making some cannabis tea. And… if you haven’t seen Deadwood yet, you should. It’s great.

The problems with aspirations.

~ El

Mainly, the problem is solely mine and therein lies the issue as I never have seriously made any New Year Resolutions. It’s not that I have no aspirations, being the way I am, I work on improving myself constantly so it’s basically as if aspiring “to be”… what it is I want to be… is a constant evolving work-in-progress. What I, or anyone, “wants to be” is their own personal matter and one that I at this point am not yet comfortable with sharing. I have shared with those closest to me and only a few “get it” but it’s hard to be me without coming off totally wrongly-– so there it is lol ☺️

For 2020 however… I am changing. I am changing everything. Even down to yup, you got it; making resolutions! So I am going to puzzle this mental world salad and hope you see maybe a little of where I’m both coming and going with this. To be a bit less ‘Lewis Carroll cryptic’ let me attempt to explain. I am what you would probably call either “too much,” “off,” “strange,” or “eccentric,” (those are the ones most used anyway) so I’m a supremely private person. I don’t make a habit of explaining myself but I realize I have to do that blogging so here is my sad attempt.

Certain things about myself (that are not bad nor evil in any way) I simply will not talk about. Ever. Unless to those very close to me. Let me try to explain an example. I enjoy, yes enjoy, helping people. To the point where each of my past partners needed “fixing” so I like to attempt to help others’ lives.
Often, I have done this to my own detriment; now serving in a food kitchen is a thing I have to limit even though it makes my subconscious scream at me that there are starving people who are dependent on me. Like I did being the only parent of the pair who even interacted with our kids as newborns and babies and well into toddlerhood as I also pushed myself to be the sole homemaker while I even did side jobs or worked in a misogynistic former marriage.
So, tl;dr version– I have pushed the shit out of myself in every way imaginable. I have, for some time, been working on changing that and in 2019 took the last step to make that possible.

It was one of the best choices of my life to leave Minnesota. I am positive I wouldn’t be alive right now had I not decided to take a chance and try to change my fate. Did I leave people behind that I miss? Of course I did and while that really blows, it’s part of life and to better a situation, changes must be made. No one will magic you into a change or new situation. You have to do it for yourself.
When I made the choice I was totally spent. I had just gone through a court system that was skewed– at best, and it flayed my mind. On top of my disabilities and conditions, I was losing my sanity and what was worse was it felt like I was WATCHING IT’S LOSS… with the speed of an IV drip.

I developed a nasty form of encephalitis while last year’s holidays occurred and my heart was starting to give me more issues than it ever had before. I had a rape case (which occured just weeks after the removal of my kids) that was being ignored since I had an open case with CPS wanting to terminate my rights to the younger five kids… because I’m disabled. And they didn’t even want to believe I have actual physical disabilities and conditions, no they only went with MENTAL DISABILITY. Mine are chronic complex PTSD and dissociative disorder. Along with being high strung as an Arabian mare and bouts of bad depression when things are super… depressing… included as well in this realm.
Whenever my Ehlers Danlos Syndrome or associated conditions were mentioned it was either immediately hushed or a reply of “this doesn’t have anything to do with HER.” Uh oh kaye. You see how they were doing me yet?
They couldn’t prove abuse or neglect (and my therapist agreed I was too fragile from trauma at the time for a trial)– however, I was coerced and pressured into signing some things that I don’t even have memory of them saying and a whole bunch of other trauma related things that are not of much regard to openly speak of at this juncture– but it was 100% never proven and my rape was 100% ignored (they still have the outfit I wore, including my favorite T shirt with HIS blood on the right shoulder). My nightmare ended with losing my youngest five kids because the judge said I couldn’t even care for myself.
Well yes, fine I get that but
a) no one had to be traumatized LEAST OF ALL MY BABIES
b) I had come to the county years previous for help they wouldn’t do crap then, they certainly weren’t now
c) I had a terrible lawyer (the end point the judge heard before decided to remove them was when THE SCHOOL lost D and BLAMED ME. He was just in the new classroom he was supposed to be in! But that part *~*conveniently*~* of course is left out.)

It was a nightmare and it also put my roommate at the time and best friend along with his son and entire family through it with me. My ARHMS worker got to the point where even at the last ‘good’ hearing that things were… and I quote! “Fishy.” Indeed they were. But enough of this experience for now. I have high boundaries on this subject and since it will be fully written, am still processing daily obsessively.

So. My 2020 I’m aiming for is this:

  • Write my book. (I need to get this stuff out and off my chest. Maybe I will be less ragey.)
  • Work hard and focus on my health.
  • Work with Indigenous medicine.
  • Readjusting to mountain living.
  • Being BETTER TO MYSELF, esp when helping others. (I can’t help if I can’t be.)
  • Find peace. It’s starting… but I need more.
  • Get married here:

Mountain folk.

~ El

We GOT THE HOUSE!! I can’t believe it lol! I mean I can, but so much excite and amaze 😆 We have a bit of time to prep and pack, as we will move end of February. Which is great because neither of us, nor my stepdaughter, has winter gear! Since the elevation is just under 7k, I plan to go mainly North Face- extreme mountain climbing type gear and wear. And guns! I will need to buy some firearms *rubs hands with glee ☺️

I don’t feel dread about the cold, I mean I did after all come here to SoCal from rural Minnesota (in a home where the heat didn’t function properly) so I have a good idea of what cold is 🥴 also I know what I will need to improve my quality of life there! I have to make a master list but you can be assured that electric blankets and things of that nature will be on it. We need to also plan for being snowed in for periods of time as well as power losses that could occur. Helicopter rides to the hospital, things like that. I will have to spread Ehlers Danlos awareness (and ME-CFS, LQTS, and others!) but I’m expert at that by now and have set up a file of paperwork outside of my medical records for my healthcare providers. It’s essentially an infinite work-in-progress as I’m constantly finding more wonderful and legit scientific information on Twitter.

Beyond the prep however, is the feeling of contentment that I have about the area we are moving to. It’s near Four Corners. So many awesome things about that area. HEALING ENERGY VORTEX Y’ALL!! Take a look for yourself! Even NASA is investigating Four Corners. Most of all, I am looking forward to the culture. My husband-to-be is Blackfoot so we are looking to put roots here and settle. The community here fits everything that our anarchist hearts have been deeply desiring, and we deserve that at this point in our lives.

My visible mutations.

~ El ~ Leave a comment
Blue sclera.
Webbed toes (2nd and 3rd).
Glow white complexion. Porcelain, I got even you beat.
I look super young. I never wear makeup and I’m 41 still getting carded for lighters 😆
Contortionist, much?
Double rooted teeth.
Extremely disproportionate. Small frame, large chest. This is an indicator for some genetic things and rare to find naturally occurring hahah, so worth a token mention.

Good Times in Flesh Prison ™.

~ El

This is something I’ve been working on for some time since I’m starting the process of finding answers. To give a small history; I was diagnosed with hypermobility type Ehlers Danlos Syndrome with vascular type crossover symptoms. When I was diagnosed I was already 39 and to be frank, I was pretty depressed after hearing my uterine rupture put me in the category likely to be “vascular type.” I was so unnerved by this that I didn’t accept the offer for the genetic testing. Big mistake on my part, but one that I will most definitely remedy, especially considering that at 41 I am starting to display some life-threatening cardiac and vascular issues with comorbid conditions and symptoms.

My diagnosis:

🛸Scarlet fever, first time (age 5-7? recurs with strep to present)

🛸Chicken pox (age 8)

🛸Epstein barr (age 12 Grapevine)

🛸Parvovirus B19-5ths (age 14, mostly seen on legs, cheeks, and trunk)

🛸TBI, frontal lobe damage seen (age 17 Mercy)

🛸Seizures began (age 17, 1996)

🛸Family suspects high functioning autism (age 16 onwards)

🛸Recurrent kidney infections (age 14-24 severe, req hospitalizations; Coon Rapids/Crosby)

🛸Recurrent utis, many leading to kidney infection (age 16-30s)

🛸Degenerative disc disease (age 19 idr where, later confirmed in 2015 Cambridge)

🛸Light sensitiveness- night blindness (age 20 idr)

🛸Whiplash (age 21)

🛸Chicken pox– told NOT shingles, but I have high pain tolerance (age 21)

🛸SI joint dysfunction (age 21 Fergus Falls)

🛸Began displaying agoraphobic behavior– i.e. phone calls, answering door (2002 to current)

🛸Chronic anemia (2006-current Wilmington)

🛸Daily, or nearly so, vomiting (2005-current)

🛸ME– was CFS at the time (2006-7? Wilmington, NHR)

🛸Post- birth hemorrhage from uterine rupture (1-22-2009 NHR)

🛸Chronic low blood count (until 2015)

🛸Acute hypokalemia; multiple times from 2005-present

🛸Cervical carcinoma in situ (2012, LEEP biopsies done. Wilmington)

🛸Hypertension (2012 Wilmington)

🛸Fibromyalgia (2013 Big Lake)

🛸Occipital neuralgia (2014-15 MN clinic of Neurology)

🛸Severe anxiety disorder (2014 Big Lake)

🛸Reynaud’s (2015 Coon Rapids)

🛸Facet joint dysfunction (2015 Cambridge)

🛸Large lumbar herniated disc (2015 Cambridge)

🛸Esophagitis (2015 Dec Fairview Z)

🛸Spondylosis with radiculopathy, lumbar– intervertebral disc displacement,  lumbar– intervertebral disc displacement, lumbosacral– radiculopathy, lumbosacral (sometime in 2015-16 Cambridge or Fairview Z)


🛸Vasospasm (2015-16 Cambridge) they told me was a “something” phenomenon, it wasn’t (I was also told to cleanse my aura and was sexually assaulted here.)

🛸Dissociation disorder (resulting from chronic trauma and pain, 2016 Dawn Borer)

🛸Agoraphobic behavior with texting (2016 to current)

🛸First blindness occurred (2016 Cambridge/Fairview Zimmerman/UofM)

🛸Kyphoscoliosis (2016 Fairview Pain Clinic- MAPs bldg, chiropractor)

🛸Strabismus (L). Surgery rec. Haven’t been seizure free long enough. (2017 North Sub Eye)

🛸Whiplash (January 2017)

🛸chronic complex PTSD (April 2017 Dawn Borer)

🛸DID (resulting from chronic SEVERE childhood trauma– only way to acquire it, 2017 Dawn Borer)

🛸Strange, powerful adrenaline reactions (2016-17)

🛸Ehlers Danlos Syndrome hypermobility type with vascular crossover (Aug 1, 2017)

🛸Presented LQTS- Long QT Syndrome in ekg (Redlands 12-13-2019)

🛸2 lung nodules (Redlands CT 12-13-2019)

Test for diagnosis or rule out–
🛸POTS (anoxic reflex seizures)/MCAS

🛸CCI/Chiari/Tethered (have a low lumbar “dimple/channel”, kid with Spina bifida)

🛸EDS types– a, k, p, v

🛸Gitelman Syndrome

🛸Type I renal tubular acidosis

🛸Porphyria*

🛸Multiple sclerosis*- 3 drs mentioned it starting @ age 17 (Coon Rapid Peds.)

🛸Cystic fibrosis* (I am a carrier, New Hanover Reg Genetics 2003) not sure I have CF exactly but what if variant? (same type of mucus)

🛸Amyotrophic lateral sclerosis*

🛸Autism (Family link, EDS link, I am neurodivergent)

*– to rule out
Lesser urgency:
🛸Rotator cuffs (both arms) (circa 2015)

🛸Better/updated look at hips-pelvic region (circa 1996)

🛸Gastrointestinal issues (circa birth)

🛸Allergies (circa birth)

🛸Lymph nodes; neck/throat, behind ears (circa 2010)
To strike off the list:
🚫Pseudo seizure (2015 Cambridge)

🚫Conversion disorder (2015-2017 Cambridge then Fairview Z, which was nearly as bad)

🚫ADHD (age 8)
OB/GYN:
🛸G14 P12– 2 still preterm 21, 34wks>, 10 live 1 term 38wks PROM, 2 preterm 32-37wks> (ALL 11 preterm pregnancies PROM)

🛸Child #2 has Spina bifida, Chiari, hydrocephalus, clubfoot

🛸Troubled-painful-frequent periods (approx 3wk cycles) only really had them since I stopped having babies as was pregnant or nursing since 15

When I finally began to get help from my providers I ran into a lot of gas lighting (still, even after a diagnosis) and eventually, right before I moved from Minnesota– the one I saw right before I left told me I was essentially out of their capabilities to treat. It was nuts. Since I’ve moved and acquired private healthcare coverage, it’s been a huge difference and doctors are listening to me. Finally. My hope is that I can help others figure out this giant web of genetic mutation fun. I think it’s so complex and deeply seated that we’re going to be at this awhile.

This list is apt to be added to and edited as I find records and paperwork. My plan is to go to my doctors with folders of things I’ve written such as this list and pertinent articles, Twitter threads, and studies.

A 180°.

~ El ~ Leave a comment

December last year was really a huge struggle. I was dealing with being totally alone on the holidays, stress, pain, and missing my kids intensely. I was suicidal and ideated nearly daily. I was stuck in Minnesota with literally no one but my best friend, and I had deep guilt over being his burden. I was absolutely miserable, had no hope for the future and felt like I meant nothing to everyone.

My health was awful. My blood pressure was high, they told me from stress. My pulse wasn’t any better. These photos are readings AT REST (I’m bedridden) and aren’t even the worst ones I had. Sometimes I’d max both systolic and diastolic at well over 200.

December this year is quite different. Some things are the same; the pain and missing my babies more than anything. When your kids are stolen from you, it’s even a physical hurt. The hurt is in my heart and solar plexus. I’ve still been dealing with rhythm and palpitation issues but my stress is the lowest it’s ever been in my life. Which is saying one hell of a lot 🤣

Now I have D. I have hope for the future. I have means. I am completely and totally independent of Government assistance, which means they have no cause to poke their noses into my life. Not like they had much cause to begin with. I am a individualist anarchist of the theological school. I don’t need a thing from them and that makes me feel not only happy but at peace. New concept for me, as I’ve had a wild life.

2020 is going to be amazing. Moving, planning a Disneyland wedding, looking for service dog… I have all sorts of things to look forward to. For the first time. Ever.

Ouchgiving.

~ El

I’m one of those Americans that celebrates on Thanksgiving. There’s no hate involved, I chose to revolve the holiday around being actually thankful for the things I have in life and for sharing the gratitude of being a family. I didn’t want my kids having the typical misrepresentations of history taught in schools being their only education on the holiday, so I preferred to take it and adapt it as my own. That said; I’m starving 😆 House smells like my perfectly spiced turkey and dressing so I’m being slowly tortured here! I made two pumpkin pies last night, foresaw the prep of the turkey/dressing early today and now I’m absolutely wiped.

I’m thankful for a lot this year. Came in very badly… however the end 🖤… but for once, things are going my way and I’m consistently happy. I feel like I’m sorta on this journey of re-discovery now that there aren’t any kids in the house. There are truly times I don’t know what to do with myself, only to realize I don’t HAVE TO do ANYTHING. Bit jarring, really. Of course, I miss them more than anything I’ve ever missed but I’m learning to accept and live with that.

I feel like this is how an actual representation of my spine would appear, delicious as it LOOKS– very indicative of how it FEELS 😆

I hurt. It’s been bad last few weeks with things getting increasingly worse. I feel like I do have another bout of mono still (that’ll take awhile to recover from, if that’s what it is) but I’m getting this chest malady now too. Hoping it’s not that lung virus people are getting from vaping concentrate because that’s my only way to help me manage pain at the moment. My chest hurts but not just in the front, I feel it on my back too and my spine is just, my typical crippled spine… I’ll be around more once I am feeling better, I don’t push myself, for any reason, anymore.