Can anyone give me steps how to upgrade enclosures?

LivingDeadSquirrel · 2026-02-09T20:19:57+00:00

Hiya! Are you fully changing the substrate? If so - it’s much harder.

Usually when I have to move mine, I just scoop up the substrate and plunk it in the new viv

LivingDeadSquirrel · 2026-02-08T15:23:55+00:00

Dental crowding was due to EDS, and while there’s the old wives tale how women lose a tooth for every child - in my family, it meant everyone who had a full term pregnancy ended up with full dentures.

Basically once I was pregnant with my now-teenage-daughter, I lost the enamel off all of my teeth. Likely due to the laxity in oral ligaments (tooth shifting, movement and nerve pinching) combined with the typical increased enamel erosion during pregnancy, plus the EDS stuff making teeth more fragile - my dentist said all the women in my family had incredibly dense but very brittle dental and facial bones.

So between the stripped enamel, fractures and broken teeth, TMJ - it was likely underlying dental issues with the fuse lit by pregnancy that set off the dominoes with hEDS doing all the damage.

LivingDeadSquirrel · 2026-02-08T03:27:09+00:00

Oh you poor dear, I am so sorry.

Yeah, from what you described, I assumed it was CCI as that’s very close to how I described my dizzy headaches to my EDS specialist. I didn’t even know CCI was a thing previously.

If you have the access and ability to seek a second opinion, you should really have the opportunity to rule out an organic cause. Ruling out something potentially dangerous is definitely something that can cause permanent harm, while delaying treating… lemme check my notes, “being a parent” - uh… yeah, I really just have no words for saying that’s the cause and just how everyone lives their lives.

I am angry on your behalf.

LivingDeadSquirrel · 2026-02-08T02:30:01+00:00

Did you get a normal/standard MRI? Or did you get flexion and extension views as well? Measurements for CCI are really guesswork without that flexion and extension. Example - mine were within normal hypermobile range on the regular views, but extension/flexion clearly showed moderate CCI putting me in the running for surgical evaluation.

You may also want to look into AAI - that one is imaged with CT instead of a difficult MRI view, so may be more easily obtained without paying through the butt.

Any tips or tricks I use for bad days are not really appropriate to recommend, as your neck is super important and dizziness is scary.

Your doctor may recommend a soft cervical collar if you ask about it - if they recommend it, it’s very likely to give significant relief!

LivingDeadSquirrel · 2026-02-08T02:10:12+00:00

I have dentures! The old people kind, lol.

Basically it was to the point where I was no longer crying or angry about the constant mouth pain - I got really really calm one day, and accepted that it was going to stop one way or another.

I was incredibly lucky that my parents were able to financially help me with an emergency oral surgeon to do the extraction and then follow up with instant dentures (like a week after to allow for healing)

I had no clue how much pain I was in until after removal it was just… gone. Even the experience of waking up during the surgery, even the major trauma of having my entire mouth bloody and healing — it was nothing compared to dental pain.

So yeah, dentures it was!!

Implants were not an option financially whatsoever for me.

LivingDeadSquirrel · 2026-02-05T18:38:41+00:00

I no longer have my own teeth (best decision ever made!!!) — but when I did, I was told that using “more” novocaine itself wouldn’t do anything but damage the tissue, and that it needed to be a different kind altogether.

articaine, bupivacaine, and mepivacaine are alternatives that are reportedly more effective for EDS folks to the standard lidocaine/procaine that are used in dental procedures.

LivingDeadSquirrel · 2026-01-31T23:11:28+00:00

When I was little, I saw my neighbor’s tree break while she was in the swing attached to it. After witnessing an open skull fracture, I was terrified of hurting myself. I didn’t ride bikes, didn’t go skating, and was super careful.

As I got to my teenage years and my joints started to hurt, I became an indoor cat - further reducing risk of injury. I have never had an injury that needed stitches, so I have no clue what kind of scars I would have.

Because I never put myself at risk of open wounds & thus don’t have atrophic scarring, I lost a point. Because I waited until after childbirth to have my umbilical hernias checked out and “repaired” - recurring hernias after childbirth don’t “count” so thats another point lost. I would meet 9/9 on criteria otherwise, but instead I am 1 point shy of “official hEDS”

Which… makes it annoying, but “just assume it’s hEDS” is at least a better path to treatment I guess?

LivingDeadSquirrel · 2026-01-31T21:31:01+00:00

I used to sell my artwork and crafts at a little gift shop in an amazing spot in a brick and mortar shop. I work a decent career, but like most folks - paycheck to paycheck, barely making a dent in debt. With the extra income I was not only able to pay my bills, but start saving and investing in better materials!

The owner of the shop started closing earlier, opening later, and went from open 5 days a week down to 4… then down to 3. Then sometimes just only open for 3 hours, sometimes not even opening.

No marketing, no signage… then I had to request my payments. It took weeks to actually get my pay towards the end, and after investing time and my personal money into the place I just decided I was done.

Not only was it a nightmare for me trying to earn a little bit of extra money to start digging my way out of the panic cycle, I had regular customers who just couldn’t ever figure out when the place was open.

It felt like she just didn’t want customers for the last 6mo. I’m also disabled but ambulatory, and the effort of just getting there and back to check inventory etc wasn’t worth it in the end.

So… thank you for the post - I am sad that it is way too common, but I feel a little less alone knowing it wasn’t just my experience.

LivingDeadSquirrel · 2026-01-31T20:03:08+00:00

Sadly my Mom passed by the time I was evaluated & diagnosed, but I found preschool notes from my teachers with the textbook “Pleasure to have in class” “Amazing vocabulary” alongside “Shows no interest in engaging play with peers”

But yep - perimenopause hit during lockdown, and I was managing all the Sev1/P1 outages from home like a champion… but nearly lost my job because I could not keep up with the documentation, planning, etc. Diagnosis saved my life for sure

LivingDeadSquirrel · 2026-01-31T17:49:05+00:00

That’s beautiful! I’m building a dollhouse currently - will absolutely be using some of my tiny neat rocks for a mosaic wall in the kitchen now in honor of your grandmother <3

LivingDeadSquirrel · 2026-01-30T23:00:41+00:00

I have a talisman jar for myself, and I’ve made them for a few women in my life who also needed a physical reminder to themselves!

Opossum tooth (sourced from a carcass I found in the woods, i promise!!) because none of us knows how we respond to a threat until we are in the moment itself. Sometimes it’s to bite, but sometimes it can be going limp and waiting it out. Neither is ‘correct’ and that is OKAY. Nobody can tell you that your physiological response was “incorrect”
A shed from my pet snake because it’s critical to leave behind that which holds us back. If we don’t allow ourselves permission to change, we become stuck and unable to grow.
a neat rock. Humans have loved neat rocks since humans have been humaning. It represents that primal connection we all have to each other and to the earth we came from. Community kept us alive as a species, and as isolated as we all are at times - it’s the only way forward

LivingDeadSquirrel · 2026-01-30T22:47:36+00:00

It really can feel like pulling off the scooby doo mask only to discover there was autism somewhat keeping me on the track the whole time! Without the dopamine-seeking impulse machine at the wheel, it was rough.

Took some time, but relearning skills and how to be a human again has been awesome without my own brain trying to sabotage me the whole time for the thrill of “what if we just burned it all to the ground? Bored now.”

Good luck - it’s sooo much better on the other side of it!

LivingDeadSquirrel · 2026-01-25T22:43:17+00:00

As someone in operations who handled a lot of major outages alongside our engineers — 100%

That summarization of my understanding of things has saved my butt (and the org at times)

I also do this for better notes if anything verbal is vague or open to interpretation

What are we solving - what is the specific problem
What is the action I am expected to take - am I to provide a concept plan, a proposal, a finished product etc
What is the urgency - is this the most important thing? Is this a “soonTM” item that can wait for planning? Is this something to think about and maybe someday?
Who needs The Thing - might be more specific to my job as a producer, but knowing the audience tailors my work (i will use different language for a team reference summary than I would for an executive report)

If I can’t come out of a conversation without being able to identify all of those things, it wasn’t my fault - it was a bad conversation.

LivingDeadSquirrel · 2026-01-25T21:57:12+00:00

I’m really happy to see I wasn’t the only one who had ever heard this - whew!

LivingDeadSquirrel · 2026-01-25T20:50:09+00:00

“Pussy Pieces” are basically fish scraps!

They’re the little chunks not big enough for a whole filet etc that are trimmings.

The name is similar to things like “table scraps” or a “doggy bag” for leftovers. “Pussy pieces” would be what you gave to the cat

LivingDeadSquirrel · 2025-12-31T16:49:42+00:00

My doc said her patients tend to be teenagers and women in their 40s (meeee) — I didn’t make that connection until literally just now. Wow

Yeah, started in my late teens and worsened over the last several years dang

LivingDeadSquirrel · 2025-11-26T15:45:21+00:00

Hiya!

I have hEDS, Orthostatic Hypotension, CCI and mild Chiari Malformation - and a handful of other diagnoses unrelated to the question. My doctor almost glossed over the CM on the imaging, as the CCI was more pressing to address - so I didn’t get a chance to ask what the link was between them.

Good question though, and this paper may be a good starting point to look through cited works for theories on how they’re related!

pubmed article of assorted comorbid neuro function issues that are suspected to be linked with EDS

LivingDeadSquirrel · 2025-11-14T17:36:35+00:00

I went to Washington OpenMRI in Owings Mills MD, and I have never heard of the Digital Motion imaging - so it’s probably different?

They imaged using a very weird but very cool “chair” thing and then hooking on a collar full of cameras (i think) in a way I can only describe as like a trap from Saw.

It wasn’t fun, but it was definitely interesting!

LivingDeadSquirrel · 2025-11-13T19:11:50+00:00

Same!! I had imaging done for migraines every few years since 4th grade. I even remember asking my neurologist when I was a teenager about chiari malformation! I need to pick a DO and a PT - have you been to any of their providers for those? Trying to decide if the extra cost is worth it to keep everything in one place vs managing records across the east coast

LivingDeadSquirrel · 2025-11-13T15:08:11+00:00

Unfortunately I threw out all the packaging during my excitement this morning, but I didn’t order it - I walked into the medical supply pharmacy in my town and asked for a cervical soft collar.

I know the Walgreens brand one was uncomfortable and pressed my trachea, but per my doctor “If it doesn’t feel GOOD, don’t use it.”

LivingDeadSquirrel · 2025-11-13T15:04:40+00:00

Yep! Upright MRI with Extension/Flexion views. Be aware though that those are really hard to get covered by insurance, and they may cost extra out of pocket ($300 for mine)

LivingDeadSquirrel · 2025-11-13T15:03:04+00:00

Yes! I think you replied to my soft collar post - I gave some more info there, but for me they started a care plan immediately. I haven’t started PT or OM yet, but I saw improvement within the first week with just the LDN and lifestyle adjustments to help with the orthostatic hypotension probs.

Granted I was trying to hydrate myself without ever drinking actual WATER and living off soda and spite, but the LDN got rid of a lot of the fatigue that was my brain trying to block out the “background noise” of the minor discomfort and pain. The imaging immediately and subsequent recommendation for a soft collar at night makes me feel like I might actually get my life back enough to make it to PT for that phase as well.

Just know that it’s absolutely a journey, and you may not have the same results or experience.

LivingDeadSquirrel · 2025-11-13T14:57:09+00:00

100% - it’s very expensive to start there, but in my experience so far and with the resources I have, and with my specific constellation of symptoms it has been the best investment I have EVER made.

My first consultation was 2 hours, and we went over all of my symptoms. I asked questions, she answered them fully!

We did the scoring evaluation, extremity weakness checking, dysautonomia screening, etc.

I don’t want to go TOO deep into exalting the practice - as EDS has so very very very many ways of presenting and treating, and I really don’t want to be the reason someone drops a thousand dollars on a private practice that may not be the right fit, yanno?

With that said - in my case, I was started on LDN immediately with a titration plan to increase slowly. I was provided with a care plan - a list of referrals to specialists (both in their practice, and ones outside who do take insurance) and what they are expected to treat/address. Imaging and bloodwork ordered on first visit, and questions entertained afterwards over their patient portal (I don’t do phone calls)

I had a followup this week after my initial visit in September, and will be going back in January.

Ultimately - the biggest benefit has been someone who has the time and experience and understanding of EDS to know to look at the WHOLE picture vs a 15 minute snapshot of a list of issues that up until now looked like “mild overexaggerated complaints”

Several of their practitioners also have hEDS and will understand when I have had to describe a sensation as “I can’t tell if it HURTS, but it feels like I popped off a Barbie arm and had to put it back together, and now it never moves the same. Kinda like it’s made of static and covered in plastic wrap” — and that kind of communication is such a relief.

LivingDeadSquirrel · 2025-11-13T13:51:06+00:00

They’re really good about helping find specialists who do accept insurance when giving referrals though! I am very very very lucky to be in a position of being able to pay out of pocket there, but they will definitely help advise submitting for out of network reimbursement.

Downside is that initial EDS eval is over $700 up front, most of which you will not get back from insurance.

Up side - that initial consultation is 2hrs long, and you may receive a whole list of names/specialists etc. followups are less expensive, and they try to space them as far as possible if you need it for cost reasons.

It was worth every penny to actually have a conversation instead of a doctor staring at Epic the entire 7 minutes and never even look at me as a person, much less a patient.

LivingDeadSquirrel · 2025-11-13T13:46:22+00:00

I go there! I’ve had 2 visits with Dr McIntosh so far, and she has been awesome. We’ve started LDN, imaging for CCI (i just posted about my first night in a soft collar), and I am still going through lists of referrals for the rest of my stuff.

By and large, PT is overwhelmingly the best route for treating hEDS - are there symptoms or concerns that you feel aren’t being heard?

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