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.

My visible mutations.

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 ™.

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.

Alma’s birth.

Originally written March 31, 2009. Warning– it’s brutal, written while I was on opiates, and I nearly died.

On Tuesday the 20th (of January) I woke up feeling like things were different. Lots of weird things went on that day.. it snowed here and actually stuck a bit, a co-worker of K’s lost his wife the night before (heart attack), and I felt like the baby was getting really close to arriving.
I kept asking K if my belly looked any lower because I could swear that I’d dropped, but he insisted it looked the same. I’m actually pretty certain that baby dropped while he was away on a business trip just days before as since that previous weekend I was urinating every 15-20 minutes around the clock. Some other things felt different that day too: lots of pressure in odd places like my legs of all places.
Once the day began to progress I realized that I was having contractions that weren’t very random at all. I started timing them as lunchtime drew near and they were about every 8 minutes or so. I continued to eat and drink knowing that since I wasn’t quite yet term (I would have been 37 weeks the following weekend) I would need to go to the hospital immediately.

Thankfully K was home all day due to the snow and he kept on eye on me and how the contractions were progressing as we kept distracted. As late afternoon came around (about 4pm) contractions were around every 5 minutes apart and I decided to check myself to see if my cervix had made any recent progress (the day before I was at 3cm and a bit effaced, very soft and baby’s head felt low). I felt around a bit and didn’t notice much significance except for perhaps more thinning. As I took my hand out however I noticed a lot of bright red blood and that signaled to me that I was indeed laboring.
The blood shook us both up a bit and we decided then to get the kids packed to go to Mom and Dad’s so we could head out to the hospital. We were worried about the snow and that if we waiting until much later the roads would get even worse.

Once we arrived, we got into triage after about a half hour wait. My contractions seemed to get more out of pattern so they had me walk around a few times in between cervical checks. I did get more regular contractions when I walked around, but only dilated another cm. I was however around 80% effaced. I ended up being discharged late that night but we were told to stay in town instead of going all the way home. So we spent the night at Grandma’s. I remember wanting Arby’s SO badly and was quite pissed to find they were closed due to “all the snow” and I had to settle for McDonald’s instead.

Although my contractions had spaced apart, I felt happy they did because it allowed me to sleep that night in between them. K got up the next morning and went to work as normal so he could take more time off when I was actually getting somewhere with the labor and I lounged in bed until later that afternoon when my water broke. It was unlike my three previous births when it had broken with a huge gush, but rather more of a slow trickle that would flow a bit more upon heavy contractions or movement. I called K to come to get me so we could go back to the hospital.

Upon readmittance to triage, it would seem that I was 6-7 cm dilated! The nurse kept commenting on how comfortable I looked and and that I didn’t even act like I was in labor.

I got into a birthing room and remember commenting about how I just KNEW I was going to miss most of Lost due to being in heavy labor. I practiced the breathing techniques discussed in Ina May Gaskin’s Spiritual Midwifery and found they worked very well. I also kept in mind that a loose mouth meant a loose bottom and that peeing at the slightest urge would help my labor to progress all that much faster.
I did consent to monitoring and IV with antibiotic treatment since with my two previous pregnancies I had been Group B Strep positive. I had the most wonderful nurses who were very for my desire to birth naturally and K helped me so much when the contractions started to get painful. I was so glad that I felt SO utterly normal in between them! Completely different than a pitocin induced labor!

As I predicted, around 8:30 I started to get the urge to make noise during rushes and began to moan very low with each one. I was checked and found to be at 8cm by this time. I remember thinking “how wonderful, this is so easy!” and that it sure wouldn’t take long now since I was already at 8! Was I wrong, lol! The contractions continued with intensity and I began to scream with them around the time Lost began and at 9:30 I was still 8cm dilated. This continued for some time and I began to vomit around midway through the Lost extravaganza and like I predicted I was so into the business of getting the baby out that I ended up missing most of my favorite show.

I asked for some phenergen for the nausea as by that time I was only dry heaving and starting to feel like I could doze in between contractions. I felt like it wouldn’t be too much longer before I was ready to push. They gave me a dose through my IV around 11 and I told K to try to get a bit of sleep. He slept like a log and I dozed heavily between contractions until about midnight when I felt like I couldn’t take the pain any more. I was checked again, STILL at 8 and remember asking both K and the nurse to help me, that I wanted it out NOW and they had the okay to cut me open and that now I was okay with drugs.
I vaguely remember yelling “OH FUCK!” once, K laughing and saying that wasn’t the best choice of word to say (oh who cares I was in labor ffs 🙄) and then I somehow managed to behave myself with the cursing from that point on. I insisted on going to the bathroom again as I think I knew something was impeding the way of baby moving down fully. I did not like being up and moving around with the rushes, which really surprised me as I thought being “chained to the bed” was something I wasn’t going to want to endure this time around without an epidural. I just wanted to lay and relax best I could between rushes and laying in bed seemed the best way to do that.

At about 12:30, I was checked again and there was a little bit of cervix left. I was floored! I never had transitioned this long before! She said there was a lot of fluid in the way of baby’s head and helped drain that out. Once she did, that’s when I began to feel like baby was moving down with each rush. Now I felt like I was *getting somewhere* and it felt great but at the same time hurt like HELL.
It wasn’t long before I began to scream a bit and that drew everyone into the room. They yelled “don’t you push!!” but there was nothing I could do since my uterus was doing all the pushing. I flipped to my back, spread my legs and held my hand over the baby’s head as I felt that incredible burning sensation of crowning. Ring of fire doesn’t even cut it, it was more like whole crotch fully lit ON fire, lol. I began pushing because I truly didn’t care who was ready to catch the baby at that point.. all I wanted was it OUT of me and NOW.
I pushed hard a few good times and out the baby came like a freight train (I am borrowing that from one of the attending nurses) and I felt every twinge of it. I heard cries and realized K had FINALLY watched me birth from the other end of the bed. He hadn’t with our previous three. He said “it’s a GIRL!” and it didn’t sink in at first because I felt so relieved that I was done with those hard contractions. I felt my body relax as I began to take in the fact that we now were two for two! K went over to where they whisked her off under the warmer so she could be observed and I felt glad that she showed no troubles breathing and more than a little justified that for once one of my babies could do just fine on their own.

I birthed the placenta easily after a few minutes and remember feeling like my vagina was now made of ground meat. K went with our sweet girl upstairs to the nursery so the pediatric team could look her over and I asked for food. My lovely nurse made me a TV dinner and grabbed me a few little cups of ice cream. I had just about devoured it all by the time K got back to my room. Both he and the nurse kept saying how proud of me they were and I was told the story of the resident who watched my birth and how big her eyes had gotten. Another nurse I guess told her that she was to move to the next room where the birth would be a lot calmer since that mom had an epidural. I just laughed and laughed.

They moved me to a room on the antepartum ward since apparently all the postpartum rooms were full. K went to get the camera for me (we had completely forgotten it before!) and then told me he wanted to go home. (In the original wiriting of this I actually had ‘Poor guy.’ written here *cringe*) He left and they wheeled the baby in to me. I remember looking at her thinking that she was definitely an Alma Marie as we had briefly discussed changing our girl name a few days before. I didn’t state anything official on it though until I had K’s okay later that morning. (Another edit– Was I brainwashed?) Our previous choice had been Vera and I had liked Alice for the middle name, but we both felt like it didn’t “fit” this baby. I took a photo of Alma on my phone and sent it to some friends and family then took a few with the camera. Shortly after the nurse came to take her back upstairs for some tests and an NICU ped consult.
I slept a few hours then sat up to use the toilet. Oddly I pushed out two large clots then felt what seemed like buckets of my lifeblood pouring out of me. It overflowed the huge, diaperlike pad and even the waterproof cloth thing they had placed under my bottom on the bed. I watched my toenails turn from pink to blue. They said they don’t know how I did it, but I waddled into the bathroom and sat on the toilet so as not to make such a mess (funny what you think of during situations like that!) and pulled on the help cord. A nurse poked her head in and I told her I was bleeding all over the place. She said “MY GOD you ARE!” and ran back out.
Suddenly I had three people helping me back into bed and the OB who delivered Alma waiting for me with an ultrasound machine. She did an internal check for tears in my vagina and cervix and when she didn’t see any she said she needed to see what was going on in my uterus. She ran the transducer over it and told me she would have to manually remove the clots in there or I could internally bleed out. For some reason I was very calm (even the nurses remarked on how calm I was) and told her to do what she had to do. She told me she WAS going to give some pain meds for this. I didn’t argue. Let me tell you, there is nothing in this world like being crotch punched four times to extract fist-sized clots from the top of your uterus. BEST birth control in the universe I tell you! I took it as my body telling me that childbirth was something best left to retire to others at this point, and I still feel that way. (I ended up having another 🤣) I lost a lot of blood and the day before discharge when we found my levels going down even with iron supplementation, I conceded to a two unit blood transfusion. (I have phobias about other people’s blood inside me and actually even had mild allergic reactions to it.)
When I was discharged I was still pretty severely anemic and now nearly two weeks later, still don’t feel back up to par. I even had K buy some disposable diapers so I’m not doing laundry quite so much at this point. Al’s about 50/50 on cloth/disposables, which is fine since many of her cloth diapers are still a tad big.

Apparently my uterus had ruptured during the end part of the birth and caused me to have large blood clots adhere to the area that it occurred. If I hadn’t felt the urge to urinate, I would have died. I was immeasurably lucky it didn’t require surgical repair or the loss of my uterus.

Alma passed all her testing with flying colors and they admitted that I was right about my due date and her being very near term. She did need to be put under bili lights for about 8 hours but after the hemorrhage, she stayed in my post partum room with me. We were finally discharged on Sunday morning (the 25th).

Stats:
Alma Marie
EDD 2/14-15/2009
Born: January 22nd, 2009 @ 12:44am
5 pounds 15 ounces
20.5 inches

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.

#PatientsAreNotFaking

I made my Twitter trend contribution but you know what? Fuck that, because after so many years of being gaslighted by the medical/healthcare system then even FURTHER so by the Gov (that’s a WHOOOLE ‘nother can of worms I’ve yet to figure out how to write up, still processing), I’ve got myself a goddamned laundry list of complaints.

My original trend contribution was the story of when I went to Cambridge Medical Center in Cambridge, Minnesota in October of 2015. There is actually another one that occured at the same hospital ER just weeks later, but I’ll get to that visit after I tell you about this one. I went in for severe chest pain that afternoon. I have had circulatory and vascular issues that came with my personal brand of the genetic nightmare –Ehlers Danlos Syndrome– all my life. Only problem was, I wasn’t diagnosed until 2017. So this pain was concerning and I was a single mom of five young kids at the time. Made sense to go to get things checked out, right?

I go in and after being largely ignored and the typical many hours of hurry-up-and-wait I had this young, perplexed appearing physician enter and ask what brought me there. I explained the situation and how my blood pressure in the last many years has been super sporadic: having even being medicated for severe hypertension late in my marriage. She ignored all this by only seeming to listen while she scanned my chart. She was so offputting that I said, well– what tests can we do? She replied that since the EKG was clear that I would be going home.

I was feeling the annoyance and frustration build up. I started to explain to her the last many years worth of health issues I’d been experiencing and she cut me short. “Have you tried cleansing your aura?” She asked abruptly. My mouth fell open. Was she even serious? I remember looking at my then boyfriend T and he literally had the same open mouthed WTF look that I was displaying.

Something in me snapped and I lost it. “Did you pull your doctorate out of a Cracker Jack box, lady?” I couldn’t think of anything but VERBALLY BRING THIS BITCH PAIN and, to be honest and I don’t even recall what was said after that. I left enraged after taking out my own IV. Taking out my own IV and rage leaving became my forte in dealing with the healthcare system, who, I could mentally at this point only think of as “those people.” When you are told you are essentially a malingerer and you feel like your body is on a steep downward slope to death, well– that shit gets super sticky, and super deep. You feel crushed, and like you are a nobody. That no one is and ever will listen to, much less believe you. It’s a supremely dark place. I should probably also mention I have a willful, rebellious nature and I refuse to be abused. By anyone.

The next ER trip was even more eventful. I will preface it by saying I DID attempt to make reports on this nurse through their system as well as through law enforcement but was told I could not. My other roommate at the time, G, was with for this one. Something in my spine had tweaked and I was getting numb in my legs and it was hard to walk. It should be noted that they had by this point, at least seen some of the major fuckery EDS & birthing 10 childen had accomplished on my lumber-sacral-pelvic region (I had by this point been diagnosed with degenerative disc disease- diagnosed at 19 which is early in life to attain this disease that everyone gets in middle age, SI joint degeneration and degradation, SI joint dysfunction, and symphysis pubis dysfunction) through MRI and x-ray.

I got in relatively quickly and was given the token exam-and-brush-off. I told them they were terrible and had no place in this world trying to help fellow humans. The doc ordered me Ativan injection, and when the male nurse took off my chest leads he GROPED MY BREASTS. G is actually who noted this before I did because the injection made me completely out of it. This triggered PTSD associated bullshit and made me insta-dissociate. I ended up doing my typical-by-that-point walkout, but before I left I went to the bathroom to get dressed, slipped, and fell ass-first on the tile floor. I heard a crack. Fuck, there goes my tailbone again, I thought. I would end up in the ER, in a DIFFERENT hospital, a few days after this for said tailbone– but yeah, the whole experience was a traumatic shitshow. Not only did it cause MORE, FRESH trauma but brought up some of da ole shit. Bah.

Some of my other ER experiences are pretty typical of most I’ve seen or heard, they all involve the doctors or nurses not listening to me or simply failing to perform the proper diagnostic procedures. If I listed them all here as I intended to do when I began this article, well— we’d be here all day. I fail to understand how laughing at patients who are determined by some substandard set of preconceived judgements to be “faking,” can be construed by any sane, non-sociopathic mind as being funny. Even if a patient is portraying falsely their symptoms… that, at the very least is a sad (albeit very expensive these days!) cry for attention or a mental illness along the lines of munchausen’s syndrome. It reeks of unprofessionalism and poor taste.

I’m not saying every person employed in the healthcare industry is this type of evil as the second instance especially indicates, but I wanted to briefly outline two of my worst ER trips. 99% of them however, did think I was malingering, or, at best– a hypochondriac.

Maybe mono?

It would be the 3rd time, but yeah I FEEL like I have mono. I’ll deal but I’m more achey than normal, exhausted (& actually sleeping more than 2-4 hours), and my lymph nodes are sore and swollen. Just like the last two times 🙈 I AM ALWAYS SICK. I assume from MCAS? One of the plethora of other diseases, disorders, or conditions? Who fucking knowssss!

I’ll do a lot of resting, we don’t have much to pack and our place is tidy so not a lot of cleaning will be needed here. The home we’re going for on Monday looks super clean so win-win. Rest, pack, move, rest & unpack 😆😆 We aren’t moving before the end of the month turns out, so timing is good.

More on this house to come after we find out we can move in, should be by Wednesday.

I love you, D!

D roasted a turkey for dinner yesterday and he’s making soup with some of the leftovers tonight. This place smells amazing! Weekends are the best, though having a boyfriend that works from home is pretty awesome too 🖤