A new decade.

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.

The problems with aspirations.

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:

Good Times in Flesh Prison ™.

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°.

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.

A peek inside.

I posted before about my Foxy and how much I love her 🖤 Details again, however, are as follows: Foxy Fix folio #7 in Spice Juniper, which is a deep and weathered appearing grained leather. Wide, with petal pockets. Black stitching and elastics. Moon phase (on the spine) and “♡ always” deboss in oil slick. Both smells and feels great. My pen sleeve is a large Spice Peppercorn with black stitching and falling stars deboss in oil slick.

This journal style is called a travelers notebook and I employ it because I use a number of different journals; art, grimoire, hobonichi, and more. My bullet journal is separate and I have a whole other book for that system (which for me is mainly household topics and lists).

Plannersquad.com defines travelers notebooks as–

A Traveler’s Notebook is basically a book-like cover that holds more than one smaller notebooks or inserts with elastic bands. Each elastic band can hold up to three notebooks.

It’s not really winter yet, at least for me in SoCal lol, so Gryffindor colors stay in the mix. I really enjoy my fall rainbow so I’m going to keep it a bit longer while I plan out clip art for the holidays. Speaking of, I’m hoping to get some stuff made up for the journaling (especially those with EDS 😉) community, a pay it forward sort of thing and the clip art will be available soon when I have my new domain set up!

This is as good as it gets– for now 🙈 Hopefully I get over this thing I have with anyone seeing the guts of my journals! This is my hobonichi weeks in a black glitter ⭐ jelly cover (purchased here) from the last week. Just ink. 😸 Mostly I haven’t been using ANY decoration (washi, stickers) but I found a nice sticker and washi combo I’m going to try to incorporate this week. We’ll see how it goes!

*This is not a sponsored article. At the time of this publication, Foxy Fix is running a sale. Use the code “HAPPYHOLIDAYS” at checkout for 15% off your order. 🥰🎄 (until 12/31 @ 11:59pm PT)

Journaling.

It’s great for the soul and a therapeutic way to organize your life, artwork, and keep lists together. There’s a lot of different ways to journal and I pretty much do them all lol 🙈
❥・・⋆grimoire
❥・・⋆bullet journal
❥・・⋆daily
❥・・⋆art
❥・・⋆sticker binder (yup 🥰)

My bullet journal is a dotted journal I found from Wal-Mart, the cheap Exceed one everyone has essentially. The paper is pretty decent😸 For daily– I use a Hobonichi Weeks, spring version. The rest I do travel journal style: stringed books in a leather cover. I have had some in the past I purchased from seller off Etsy, but for my last birthday D gifted me a #7 Foxy Fix Folio (leather type/color: Spice Juniper) and penholder (leather type/color: Spice Peppercorn) that I had wanted for YEARS! Then, I found a #2 Foxy (Sugar Icing) in a Facebook resale group that I plan to use for my wallet. I will get a new string kit and wallet insert for it, so it’s a work-in-progress.

I’m a super private person so getting to see the insides of my journals is to come, I think… but bear with me y’all, I’m working on it BUT it may be some weird issue like phone use is for me– we shall see!

Some of my favorite finds were a sticker subscription called Stiicki Club, Mercharms for delightful handmade sparkly things, Mildliner highlighters, a bullet journal cover from SewWhatElseIsNew, and my Hedwig dangle is from Love Neen 🖤

*not a sponsored article

Honey Badger.

I’m a strange person. Yeah, yeah typical buzzword woo-girl motto these days, but it’s true. I am not, nor ever have been, typical with my perspectives and theories. I hold radical beliefs both politically and religiously. I have a lot of labels like “ist” attached to me (anarchist, humanist, equalist vs. feminist– hey, I am a fan of symmetry okay?), as does everyone these days. I try not to use them. It’s tough. I find other than attaining more diplomacy skills and wisdom as I age, I also give zero fucks. I will end this article with how you can also be the giver of negative copulations, my friend!

Since the things I hold haven’t ever been popular consensus-wise, I find the birth of the internet helps me feel like maybe there’s a lot more aliens like myself than I had once originally thought. Feeling like you have a tribe, even a distant and virtual one isn’t something to be dismissed.

When you hold unique views on damn near everything you learn to really become open minded. Yes, I love firearms. Yes, I am a woman. Yes, I am physically limited. Yes, I hit what I aim for, even drunk apparently (there’s witnesses). Yes, I am a firm believer in the 2nd amendment constitutional right.

No, I currently don’t own a gun and haven’t for some years. But let me tell you this, when I was pregnant with my youngest child in 2011, I was the victim of an attempted fetal abduction. You bet your sweet ass I was glad for the .45 Smith & Wesson revolver that we had. I carried that sucker on me for MONTHS, even after I delivered J. Or when, in 2015 I had to pull a shotgun on my stalker. There are other occasions I could list almost literally ad nauseam but I’m not here to debate, or sway opinions. I’m simply telling you these are some examples of guns saving mine and my family’s lives to give a bit of the WHY behind the GUN NUT.

I used to debate. I used to enjoy it and I was good at it too, but I simply don’t care to expend the energy now that I don’t have a lot of it. Age too, has brought about much blasè about how I feel about others. I care about people and help in the ways I can, even if it’s just sharing stories. Coz to be frank, that’s all I’m doing. Not opening a forum for debate, but just sharing stories about my life to others who may feel somewhat outcast from the world.

Now about other’s differing opinions and perspectives in the way that it will or should impact my life is I refuse to let it effect me in the negative. Deflection is pretty easy after doing it for years, it becomes second nature. Deflection WILL save your sanity, fellow outcast– never fear.

Okay so how the entire fuck do I deflect negative energy, you ask? Well sit down, and I’ll tell you in 6 super simple ways:

  1. Focus on solutions, not problems.
  2. Don’t feed the drama.
  3. Watch your boundaries.
  4. Stop trying to fix everyone and everything.
  5. Respond, but don’t react.
  6. Take care of yourself.

Why do people kill themselves?

  • Emotional connection.
    The suicidal often feel alone. They may have a partner, a family, friends, but they still feel alone. Because having people around us does not mean we are connected to them. So what is this elusive connection? Being seen for how we truly are – all our bad stuff, and being accepted and loved despite it all. Our desire to feel love is strong, yet can be quite unconscious.

Of course, most of us are far too ashamed of how we feel to let anyone else see it, me included. And in that shame we hide who we really are, or parts of us anyway. Even if we are with people, they don’t see the “real” us – we see that part as unlovable. So who we really are never connects with anyone else, and thus we are isolated – desperately needing connection, too ashamed to make connection.

  • Physical connection.
    This could be sex (as part of our genetic programming to reproduce, or simply for pleasure), or be something much simpler. The need to be held, touched, hugged, stroked. Studies on monkeys showed massive detrimental effects on those that had no touch from others, and humans are no different – we need touch.
  • Support.
    In today’s world people have become more insular. It is easier to conduct a life from home in front of a PC. People don’t rely on each other anymore – we are fiercely independent. People can’t fall back on a community, a support structure. This can be especially true for those who are not part of a close family. That may be because their family are no longer living or spread over a wide geographical area, or because they simply aren’t close to their parents or siblings.

We need this support desperately. So we have people to fall back on when times are tough. People that can hold us in that space. People we can be ourselves with. People we can really talk to. And people we can have a laugh with, do things with, discuss things with. People that can help us. Sometimes all the therapy and medications in the world just won’t work if people can’t feel part of a group. What constitutes a group is not set in stone – does not need to be a big group, but there is something about multiple people interacting that can be much stronger than just being with people one-on-one.

  • Purpose.
    Everyone needs a reason to get out of bed in the morning. It might be to look after a family, to earn money for that family, to help friends, to overcome a challenge, to help those in need. There are lots of reasons, but we all need one.
  • Chronic and terminal illness.
    Pretty self explanatory, but speaking from direct experience and being a repeat attempt survivor I get this one. For myself I like to go with the “lame horse” explanation. People suffering from these types of illnesses are going through so much on an hourly, not even daily, basis. It is extremely difficult to find the things in the aforementioned categories if you are confined by bed and/or body. Thus, I believe that those suffering with these illnesses should be considered more emotionally needy especially since we can’t get much of what’s mentioned in the previous categories. Quality of life should always be considered by loved ones and healthcare workers. The lower the quality of life is, the more detrimental effect it is going to have on the ill individual.

For an example: In my darkest place, I tend to feel that it’s others’ selfishness that want me to remain alive. Why? Because I am in so much pain on a constant basis, much of the time it’s excruciating. There is no cure and no treatment to help with my debilitating genetic disease. Do they even understand debilitating? It means each and every single day of the rest of my life is going to go downhill in regards to my body and what I can’t do. I do not want to spend days where my suffering is somehow even 1000 times worse than it is now, it is bad enough! I feel like the people wanting me to be alive are okay with my suffering, and well, it just seems not their call to me. For myself, I see death as finally being able to have peace. Totally new concept here.

Pain! The pain that chronic or terminally ill people experience is usually constant and unrelenting. They may have better days at times but each day is seen completely different by the ill person themselves, most especially once their perceptions have shifted towards suicide. They have no hope because they have nearly literally been told not to by healthcare workers: “Your illness can’t be cured” “There is no treatment for this illness” or worse “Be prepared to have a greatly shortened lifespan” or worse yet “Your illness is terminal.”

Please place these as considerations if you experience a friend or loved one who is suicidal. This is all referring to people with serious plans to cease existing, not cries for help. Suicide attempts and ideation are nasty motherfuckers I’ve been in an active war with since I was a small child due to recurrent traumas along with my bodily struggles. I’ve been doing pretty darn good these days but believe me when I say I do know that dark place all too well

Artwork featured at the beginning of this article is The Death of Buddha of the Kamakura period (14th century) Japan.