Modern day calamity.

12/30/2019 ~ 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.

Comments…

12/26/2019 ~ El ~ Leave a comment

I’m not sure why some posts I make don’t allow them? I can look on the desktop but I think I’ll pass that buck to D since he’s the web developer 🤣

The problems with aspirations.

12/26/201912/26/2019 ~ 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:

Merry Christmas.

12/25/201912/25/2019 ~ El

While we tend to follow pagan traditions primarily (as that is our spirituality!) we also partake in some of the modern-day Americanized Christmas ones, but we mostly still just do it our way 😸 I’m looking forward to the holidays next year in the new home, I’ll have *MUCH* better pics to share, as it’s rather tiny here and we couldn’t even be arsed to do a tree lol…

From our home to yours, we wish you a Merry Christmas! 🎄🕯🖤

Mountain folk.

12/22/201912/22/2019 ~ 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.

It’s official!

12/21/201912/21/2019 ~ El ~ Leave a comment

He proposed to me with his grandmother’s dainty ring, as she had very tiny hands as well. I can’t tell you how special that is to me! I’ve found my wedding band… sort of 😸 it will need to be made. I was doing some Pinterest hunting for wedding bands and I found these gorgeous Japanese art pieces.

My hope is perhaps to get either all my kids birthstones or something similar to the colors above but with pearls. I’m in love, I don’t much care for typical looking jewelry so I am on cloud 9!

My dress and boots will be something along these lines. We’re aiming for a Christmas season wedding (2020) at either Disneyland or Disneyworld so I want to do a Brave theme to embrace both our Scottish heritages 🖤

I would like to have a rustic buffet table with traditional Gaelic cuisine. There will be open bar, regardless of myself being allergic– I won’t refuse our guests a good time!

I have some ideas like this one featured here for our photos. Which brings me to my next news:

We decided (for sure this time 😹) to move somewhere other than Arizona. We applied for a really beautiful log home in the mountains near Four Corners. (A place I’ve always been fascinated with!) The woods will be the perfect backdrop for our photographer!

My first wedding was super small and we didn’t really do much for it. D told me he wants me to have the life of my dreams and he is without a doubt proving himself to be a man of his word. Wow, do I love this man.

A Snowy Night Capriccio.

12/21/201912/21/2019 ~ El ~ Leave a comment

The Girls Frontline holiday event is awesome. Killer rewards!! I cleared all the maps the first day, and I suggest peeking at Reddit to see the farm routes and suggestions. I find them immensely helpful.

I liked the storyline a lot. It was entertaining and cute (I have an odd sense of what cute is guys lol). The maps weren’t hard to clear but I would guess I’m somewhere mid-game now. The farming is quite fun, I don’t feel it’s a chore at all.

I need the titmas tree costume with a serious intensity 😹, hoarding those tickets– over halfway there 🎄

Gatcha luck! I got 2 so I now have my first black card hahah.

I pretty much couldn’t resist this costume, and some other packages 🤭

57 attempts and I brought CMS home. Going for QJY 88 next.

This event costume only took 3 days of farming stars, so not bad at all! One more costume to go and hoping to buy out the shop by not missing a farming day. This game brings me so much joy and pain distraction. I’d say 3 years of heavy gaming and this has every single one beat– I’m a lifer 🖤

My visible mutations.

12/14/201912/14/2019 ~ El ~ Leave a comment

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 😆

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 ™.

12/14/201912/14/2019 ~ 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.