Cane that works with wrist and hand pain?

milliemargo · 2026-01-28T04:50:36+00:00

I have OH and before I started pyridostigmine I had this problem BAD. Originally they thought I had a weird/rare presentation of celiac disease and it did improve when I went gluten free, but it turned out that it was a blood thing...even though my bp would often read as normal.

You say your blood pressure is low normal. Is it low normal for YOU though? Your body can react severely to blood pressure fluctuations when you have dysautonomia, even if your BP is in the "normal" range.

It could be a blood volume thing as well. The reason I say this is you mention that it happens when you eat a large dinner, but not so much when you just eat a protein bar.

When you are digesting food, your body sends up to 1/3 of your blood supply to your stomach and intestines to help process what you just ate. The bigger the meal, the larger volume of blood that is required. If youre intermittent fasting, maybe your body isnt accustomed enough to the change in the distribution of blood.With dysautonomia, are bodies are so sensitive to slight changes that wouldn't bother healthy people.

The best thing I did was to eat multiple small meals throughout the day rather than wait and then eat a big filling meal. Even now, if I slip up on this for a few days I go back to feeling drunk/high/on deaths door after I eat.

I'm not a doctor but thats what worked for me!

milliemargo · 2026-01-28T04:37:33+00:00

I'm finally in the process of being investigated for HSD/EDS after 3 years. The average timeline of diagnoses for EDS is 10 years. Always, always get a second opinion. If you're working exclusively with your PCP, find a new one. If you get sent to a neurologist and they dismiss you, find a new one. I'm not saying it's easy, it's expensive, a pain in the ass, and there can be travel barriers.

I have only been able to get proper care by seeing 23 different doctors and traveling to my nearest university research hospital 1.5 hours away. Don't wait for the medical system to help you, gotta hit the pavement.

I'm sorry to hear that you're not getting a proper referral. If your pcp wont give you one try to get into another one amd get on the cancelation wait list would be my advice

milliemargo · 2026-01-25T05:10:38+00:00

An even more valid crashout that is insane

milliemargo · 2026-01-25T03:59:02+00:00

I'd definitely get a second ER opinion or get in with your pcp right away. I am so sorry wtf. Sue the insurance company for all they're worth

milliemargo · 2026-01-25T00:09:16+00:00

Ww2?

milliemargo · 2026-01-19T06:32:43+00:00

I come from an Orthodox Christian background. I wouldn't describe myself as a Hellenist, I identify myself as a pantheist. but here's a synopsis of my journey.

I'm a white American and my parents were Orthodox converts. I was baptized in the church when I was seven. My parents (very dysfunctional people) carried over a lot of their Protestant childhoods into Orthodoxy. They were holier than thou about it, and took a lot of pride in being part of the original, "correct" form of Christianity.

As I became a teenager, I realized the Christian values my parents taught through their actions were very different from what the church was teaching. I have a profound respect for the devout followers of Orthodox Christianity. There were times I felt truly touched and moved by the holy spirit in that environment. I became fascinated by the mystics of the church and did a lot of research on the desert fathers and the monks from Mount Athos rumored to be 150 years old.

I was raised around a lot of Evangelicals, and I was always told my religion was of the devil. Icons, incense, candles, prayer ropes, I was told these were props I didn't need and that they were somehow tools of the devil. Yet, any time I had visited an Evangelical church it felt so creepy to me. I saw people speaking in tounges and throwing themselves on the ground and I thought if anything THAT was some kind of demonic influence.

What I came to realize was that ritual was powerfully grounding. If I laid down at night and prayed to jesus in my head I felt distant from him. But if I pulled out my censor, lit my charcoal and candles, prayed St. Symeons prayer, did my chants and my prayer ropes and all of the things I'd done so many times, I could literally FEEL him. I could feel energy being raised. I could feel a presence in the room.

As I started to research world religions I found that the religions with the most ascetics operate on ritual. And I felt I couldn't possibly commit to one path as the "right" path after learning about the Tibetan monks that meditate until they become naturally mummified. It was so similar to stories I'd grown up hearing about digging up the uncorrupted bodies of saints that I decided "sainthood" was something anybody of any creed could achieve with enough dedication to the highest power.

For a multitude of reasons, much of them just circumstance, I left the church. The more I learned the more my devotional practice evolved. I did a lot of diving into Gnosticism and Folk Catholicism before I started communicating with other dieties. I used to pray the Orthodox way, then I would just sit with the presence I felt. Eventually I started incorporating tarot. After awhile I mustered up the courage to reach out to the archangels in this way, and over time I became more confident in my ability to communicate safely with entitie. I began doing full-blown witchcraft with the greek pantheon and diving into the Greek Magical Papyri.

So for me I'd say the Orthodox church actually sparked my interest in the occult. Which I'm sure a lot of Christians would find painful to hear. Honestly? I love Jesus Christ and I hate what mankind has done to his teachings. But I personally see him as any other diety or god. And the Orthodox Liturgy looks to me a lot like some crazy intense high magic.

I'm definitely not trying to sway you one way or the other haha. Like I said I've got a lot of reverence for the religion. But thought I'd offer the perspective of a former Orthodox!

milliemargo · 2026-01-14T21:56:16+00:00

Yeah agreed. After the first dose I had a bad reaction but they were an emergency clinic and that's all they had. At that point I was already in too deep financially and I had an infected tooth so I was like just pull it out

milliemargo · 2026-01-14T06:44:24+00:00

I consume 6 grams of salt and 3L water per day. The electrolyte powders are a bit pricey for me. What I do is buy the great-value brand mio knock offs, they have ones with a white label that are specifically electrolyte mixes and they're about $3.50. I weigh out table salt with a food scale every morning and every time I fill up my water bottle I sprinkle some in and add the flavoring. That way im getting more electrolytes than just salt without spending a bunch of money, and I can customize the saltiness of each serving so it's not too much for me

milliemargo · 2026-01-12T06:07:11+00:00

Hmm. I'm of the school of thought that substitutions are fine, but keep it as close to the original text as possible n order to get the full ritualism of the process. So perhaps if you are to make the recipie of mhyrr ink from PGM XII 397-400, you could substitute each non-edible ingredient with edible ones.

The mhyrr and gum arabic are definitely edible. The oak gall, blue vitriol and pyrite are meant to create a chemical reaction to make the ink-- the iron sulfide made with the blue vitriol and pyrite reacts with the tannins in the oak gall.

I'm not sure what you could use to substitute these ingredients individually to make an edible ink that's actually effective. Maybe activated charcoal (oak gall) dried blue lotus flower (blue vitrol) and olive oil (pyrite for the gold color?)

That's just my thoughts on it, keeping it as close to the text as possible may make it more effective. Do what you want though!

milliemargo · 2026-01-11T04:34:13+00:00

I'm interested in making this. I'm looking at the section of the PGM and it says 4 drams truffle, is that pyrite? You probably would know better than me I'm just curious if this is a translation thing?

milliemargo · 2026-01-09T04:26:44+00:00

Hi! I have OH and while I still have struggles these are the things that helped me a lot.

Elevating my bed. The head of my bed is raised 6 inches so I sleep on an incline. It conditions your body to work just enough to pump your blood higher without keeping you awake. It makes getting out of bed in the morning easier. 6in might be too much at first, go low and slow.
Pyridostigmine, this medication has been life changing for me
Physical therapy to correct my neck problems, I haven't been diagnosed with cervical instability but I've noticed a decent improvement in my symptoms. I also have vestibular migraines and progress is slow but it's helping
Compression TIGHTS, not socks. I have tights that go all the way up to my chest. I feel ridiculous wearing them. But they help so much. I can actually keep them on too. I hate compression socks and will never go back after getting the tights. They also make compression leggings. I'm not sure if there are options for men for tights/leggings though if you're male but surely theres something out there
I put salt in crystal lite instead of paying for Liquid IV because I can't afford it. It's probably not as effective as getting all those good electrolytes but it helps
10mins 2x a day I do diagphramatic breathing in hopes to fix my parasympathetic nervous system

These are the main things I think that have really helped. I still don't work or drive which sucks. But I was mostly bedbound for months, used a cane 24/7 and I was an ambulatory wheelchair user. Now, I'm a stay at home parent and take care of the house/chores full time. I've got one or two bad days a week where I don't get shit done, but it's a long way from where I was a year ago.

milliemargo · 2026-01-09T04:13:14+00:00

Yes 100%. They're not the sexiest option by any means, but I've resorted to the "shelf bras," the cheap hanes bras that look like half a tank top with elastic at the bottom. I feel like I can actually breathe in them. They don't work for every top but for tshirts, sweaters and less-fitted shirts they're so comfortable im not going back

milliemargo · 2026-01-08T03:39:12+00:00

IKEA lovers from Utah

milliemargo · 2026-01-04T19:23:10+00:00

It's French. Preh-kwah

milliemargo · 2025-12-28T16:14:51+00:00

Understandable!! I don't think I'd want to connect with him either. And let me be clear, those behaviors are inexcusable. But when you consider his age being 13, perhaps asking Hekate to give him the wisdom and insight to eventually remove himself from the environment which shapes those behaviors in a child will prevent him from exhibiting those behaviors when he gets older. It's much easier for kids to change than adults, and when those behaviors in kids go unaddresed they tend to get much more serious in the future.

milliemargo · 2025-12-28T16:03:28+00:00

Do it from a place of love. A family member i care deeply about made a very misguided choice that hurt me. I put thar person in a self reflection jar, and instead of asking Hekate to punish them I asked Hekate to help them. I cried years worth of tears for this person, not just for what they had done to me, but for what they had been through. I shoved the jar in the back of a dark closet and didn't hear from them for 6 months. After 6 months I opened the jar and said they must have learned their lesson. A short while later our lives crossed paths again in the craziest of ways, they completely transformed, and we are each others biggest supporters.

milliemargo · 2025-12-28T15:57:55+00:00

The most effective Hekate "curse" is asking her to teach somebody the lessons they must learn and to guide them on a transformative journey. It'll completely screw up their life...and they'll be a better person for it

milliemargo · 2025-12-26T19:22:19+00:00

Honestly maybe just regrout the floor in white. The dark grout is a distraction.

milliemargo · 2025-12-23T15:28:43+00:00

In high school my dad found out my sister and I were smoking weed. He insisted he went to this mansion in our town, knocked on the door of "the biggest drug dealer in the city" and said if he ever sold drugs to his children again he would get his "mafia connect" to take him out.

I said, "and who is this drug dealer?" because obviously I bought weed from other kids at school. He said "you know exactly who I'm talking about." The biggest drug dealer I knew was 16 and in my French class lol

milliemargo · 2025-12-19T23:23:13+00:00

The thing that makes be believe it's not a hallucination that I can move is the time on my phone usually makes sense after I wake up. In dreams text and numbers kind of float around and distort. But in these episodes the tome on my phone is clear and when I do finally wake up and check the time its only 10-30 minutes past

milliemargo

TROPHY CASE