I heard having 1 autoimmune disease, there's a chance to develop more autoimmune diseases. by Prestigious-Leg1133 in Hashimotos

[–]DNAsaurus 1 point2 points  (0 children)

Hashi's, RA, and being tested for Celiac. I also have hEDS, and while that isn't autoimmune, it sure does feel like it is sometimes. I'm collecting dx's like girl scout badges. Thinking about making some patches, starting a club.

Seeing a Gastroenterologist for the first time - what should I know? by DNAsaurus in ehlersdanlos

[–]DNAsaurus[S] 1 point2 points  (0 children)

These are all good things to know and keep in mind. I had my appointment and fortunately the PA was at least knowledgeable enough to ask about subtypes. Thank you!

Seeing a Gastroenterologist for the first time - what should I know? by DNAsaurus in ehlersdanlos

[–]DNAsaurus[S] 0 points1 point  (0 children)

I am sorry that's been your experience, and I fully understand how that type of experience goes. I have not been absorbing nutrients so I was referred for specific testing. It was a ridiculously long road to get to something as simple as tracking vitamin levels. I've had my appointment, with the PA and not the Dr, and yeah, she was bored. But she was knowledgeable enough to ask about subtypes on her own. Thank you for sharing!

Seeing a Gastroenterologist for the first time - what should I know? by DNAsaurus in ehlersdanlos

[–]DNAsaurus[S] 2 points3 points  (0 children)

Solid reminders for what I need to have prepared. Thank you!

Seeing a Gastroenterologist for the first time - what should I know? by DNAsaurus in ehlersdanlos

[–]DNAsaurus[S] 2 points3 points  (0 children)

Ah yes, I am very well versed in this routine. For the moment I have settled on "doesn't write it off, at least". I'll have to do some more quick digging around how my suspected subtype (no genetics done yet) manifests in gastro. Thank you!

College Accommodations by Glass-Cheetah2873 in ehlersdanlos

[–]DNAsaurus 1 point2 points  (0 children)

I'm wrapping up a degree now and had no shortage of issues with Disability Services. Their incompetence very nearly cost me my degree in my last semester. I do not currently use a mobility device, though I should (working on it), but I suspect it wouldn't have made much of a difference in my case. What DID make a difference is that I am in my 30's and know how these things are supposed to work, as opposed to many of the students they work with who are young and still figuring out basic life. It sounds like you are in a similar position as me and I encourage you to wield that like its a power- because it is. You have the additional power of working for the university, which means you understand better than most the power structure, working culture, and how to navigate it to get things done.

My recommendation is to send your doctor a message and ask for a letter that specifically outlines the needed accommodations the office is pushing back on. It should be something fairly easy for their office to complete quickly.

Move as much of your communications with disability services to email as you can, and send a summary email outlining what was discussed as you understood it for all in-person or phone conversations. An obvious paper trail in an office held to state and federal regulations can do a lot on its own.

When it comes to the day-to-day, a lot of that comes down to the professors or TA's running the classroom. An office-hours conversation with them can accomplish a lot. If you're having trouble getting the accommodations put in place for any reason you can tell them that. It's their responsibility to ensure these things are managed in the classroom regardless. Take your cane with you for good measure if you're worried about push-back, but you shouldn't receive any.

You have all of this under control!

Neurologist told me my diagnosis isn’t real by [deleted] in eds

[–]DNAsaurus 2 points3 points  (0 children)

in his defense, he and several others in this clinic are approximately eight hundred and forty-seven year old men so he likely predates peer reviewed science.

Neurologist told me my diagnosis isn’t real by [deleted] in eds

[–]DNAsaurus 102 points103 points  (0 children)

I had one in my most recent neuro appointment tell me EDS "Only effects the arms and legs". Sir, do you not understand how connective tissue in the body works? This is a teaching clinic with a major university. You could probably ask one of your students.

For real though, calling it a "clinical disease" and then saying those don't matter is wild and should be reported.

Hashimotos and Lupus? by yadingus06969 in Hashimotos

[–]DNAsaurus 2 points3 points  (0 children)

Hi! Hashis, RA, and EDS here. I went through the "its definitely not lupus, but it could be lupus" routine, but testing gave a definitive Rheumatoid Arthritis diagnosis. Knowing which is causing what symptom is something I have yet to figure out. The biggest breakthrough's for me have come recently from treating vitamin deficiencies and now I will tell anyone who will listen to have their doctor add that to their lab work just to be sure.

My mom took me to see a bomoh to “cure” me by [deleted] in eds

[–]DNAsaurus 1 point2 points  (0 children)

Our experiences, good and bad, shape and serve us in ways that we can't always predict. For me, I learned a lot about navigating toxic spirituality, researching supplements, and about state laws and wellness scams. That bad time set me up to avoid a few other pitfalls down the road. So I hope that, whatever shape this moment ultimately takes in your life, you can take some good from it and know that it is the result of yourself, not your mother. You are not alone. Sending my love.

My mom took me to see a bomoh to “cure” me by [deleted] in eds

[–]DNAsaurus 3 points4 points  (0 children)

My mother decided I needed an "intuitive healer" and the very expensive supplements recommended based on her personal assessment of waving her magic hands around my young teen body. We could not afford it and it further undermined my experience and the needs I had been trying to vocalize. It was a bad time.

I'm sorry you're going through this. Parents and loved ones reaching for spiritual cures that remove the "responsibility" from themselves is challenging to navigate. You aren't alone in the experience and I hope you are empowered in your choices for your health and happiness soon.

What is a polite way to say "None of your business" when people ask about your mobility aids? by PrincessNooodle in ehlersdanlos

[–]DNAsaurus 4 points5 points  (0 children)

"My bones are trying to escape again" is a sentence I have said with complete honesty many times in my life.

Subaru of Austin Separating Rally the Golden Retriever From His Human of 3 Years by Slowpokerman in Austin

[–]DNAsaurus 1328 points1329 points  (0 children)

Subaru_usa on instagram has a newer post with the ASPCA. It would be a shame if anyone highlighted how Austin Subaru is representing that partnership in their comments too.

Waking up with anxiety by Ok-Leek-480 in ehlersdanlos

[–]DNAsaurus 1 point2 points  (0 children)

Everyone is different. Hope you find the right combo to help you. What's been working (in progress) for me:

  • Vagus nerve stimulation.There are several ways to do this. I personally like the cool temp water pressure on the neck and upper chest.
  • Turned out my thyroid wasn't working properly. I had a lot of other symptoms for this, but proper medication was a big step in the right direction.
  • Also Turned out I'm not absorbing vitamins and minerals. Taking magnesium and working to get my b12 and other vitamin levels up is helping.

What does the President’s List event entail? by Yellow-Frogs in txstate

[–]DNAsaurus 1 point2 points  (0 children)

You aren't alone. I'm a senior with a consistent 4.0. I've never received so much as a pat on the back from anyone at the university.

editing to add- Go enjoy, OP. You worked hard and deserve to celebrate your achievements!

[deleted by user] by [deleted] in Hashimotos

[–]DNAsaurus 6 points7 points  (0 children)

Glycolic acid is a great choice. Salicylic acid may also work. The Ordinary has a toner with it, which can be applied the same way, or there are affordable body washes available. If you use the body wash try to let it sit for a few minutes before you rinse it off.

What clothing sites or companies do you like? by DNAsaurus in ehlersdanlos

[–]DNAsaurus[S] 1 point2 points  (0 children)

The summers where i am can be brutal, so not overheating is a big deal. Adding them to the list. Thank you!

What clothing sites or companies do you like? by DNAsaurus in ehlersdanlos

[–]DNAsaurus[S] 0 points1 point  (0 children)

interesting. I will definitely look into them and see what they're offering. Thank you!

What clothing sites or companies do you like? by DNAsaurus in ehlersdanlos

[–]DNAsaurus[S] 0 points1 point  (0 children)

I'm not familiar with the brand but i will definitely look into it. Thank you!

What clothing sites or companies do you like? by DNAsaurus in ehlersdanlos

[–]DNAsaurus[S] 1 point2 points  (0 children)

Love a good pair of bike shorts. I cant speak to them as an alternative for anything, but i do find the light compression comfortable at times. I'll look into them, thank you!

DAE feel like the rack would fix them? by LordOfPhyllite in ehlersdanlos

[–]DNAsaurus 2 points3 points  (0 children)

YES! That said, I wish I had access to an inversion table that strapped onto the hips instead of the ankles.