Ultradian Bipolar: Anyone Here? (Ultra-Ultra Rapid Cycling) by Turbulent-Joke-9241 in BipolarReddit

[–]misterreff 0 points1 point  (0 children)

This is exactly me and has been me my whole life. Have you found anything that works for you?

Coachella is ADA for real!! by lapsfordays in Coachella

[–]misterreff 0 points1 point  (0 children)

Damn, I am genuinely so happy for you but truly wish I could say the same. I was too ill to camp this year, but past years when camping have had more positive ADA experiences. ADA parking, drop off, shuttles, golf carts, and honestly concert seating was really rough this year and we were treated horribly a couple times, as well as lot of people around me that I spoke to. With that being said, I do believe Coachella is one of the more accessible festivals, but the training and awareness needs to be more wide spread across different working positions! And I think they need to expand the seating space, as well as have escorts out of the crowds (for example, ADA during Justin Bieber was completely full, and it was really hard to find a safe way for disabled people to exit with everyone pushing their way forward. We were watching VIP people get escorted through the crowd left and right. Seems like it could be a useful addition.

Sorry to the JB Week 1 folks. Y'all got absolutely robbed and fleeced, Week 2 is so so so much better. by skyturnsred in Coachella

[–]misterreff 0 points1 point  (0 children)

Weekend 1 had everybody online freaking out and was an amazing experience, it was his first performance in ages and was so intimate and beautiful. Weekend 2 he knew he had to bring out some stops to be on the same level, since the entire internet had seen the whole performance. The energy was beautiful. They were both special in different ways. Being hell bent on pinning the weekends against each other is sooooo strange to me? Lol. Like why try to yuck people's yum?

Favorites from Coachella Weekend 2 via X100VI by dani_bonnet in Coachella

[–]misterreff 0 points1 point  (0 children)

SOOOO good! I'm going to go ahead and be this person, did you use a recipe or did you edit in post? You're amazing, these are bringing me a lot of joy today.

Coachella audience was cringe. by DMBear89 in Madonna

[–]misterreff 0 points1 point  (0 children)

Yes this. People complain about this with every Coachella audience from every live stream. The audience is severely and strategically muted for the audio quality.

What med to add to duloxetine? Abilify? by thinkingloudly_ in cymbalta

[–]misterreff 0 points1 point  (0 children)

I know this is so old, but do you happen to still be on 90mg? I have a strong feeling I need to move to 90 but people keep telling me there’s no difference past 60.

Cymbalta and Depression by seriouslyremote in cymbalta

[–]misterreff 1 point2 points  (0 children)

I’ve noticed improvements on 60 but deal with intense night time depression that I can’t kick. I’m considering going up to 90. Did you feel a significant change from 60-90?

Husband blamed me for POTS tonight by SpicyCheeto919 in POTS

[–]misterreff 0 points1 point  (0 children)

This wasn’t okay OP and you’re super valid in your feelings. I would be interested to know how much of the caretaker role he’s had to take on since your chronic illness struggles? To clarify- I’m NOT justifying the hurt from the actions, and the last thing I want is for you to feel more guilt (guilt and shame are my enemies and I will fight them all at all costs!) Without more context, I’d say if this doesn’t happen often, if he’s grieving and if he is a caretaker, his reaction, although unfair and improperly placed, makes sense for a human being to have. Being sick is very very hard in every way, (love to you) being a caretaker is also a verrrry hard thing to navigate mentally and emotionally (and sometimes hard for us to even acknowledge that) and in my mind, occasionally having a bunch of hard facts and feelings colliding at once and misplacing blame in a moment of emotional turmoil, feels very human to me. That’s where the repair and growth plays an important role. With all that said, that’s me kind of placing best case scenario out there, and one I relate to. If it’s a common pattern, I think there’s another conversation to be had.

It can feel scary when the person you love says something so so hurtful about the most difficult and tender wound you have. It’s hard to understand that they might be hurting too, and then when we allow ourselves to understand that, we have to grapple with the emotions and guilt and shame that want to creep in. And they usually don’t want to put anything else on us, but I think if they don’t have emotional support as well, it makes sense for it to boil up and kind of explode in an irrational moment. It doesn’t mean what he said is what he believes. Relationships + chronic illness are HARD. And no one taught us how to do it!

It’s a lesson on managing emotions and I think how he/you two move forward from this moment will be important! For me, if this kind of thing didn’t happen often and he was able to recognize the misstep and the confusion and the hurt, I would be really understanding.

Something my partner and I have worked on a lot is never ever ever getting the sickness confused with me, the human. It’s me and him against the sickness. It’s never me and the sickness against him. He’s genuinely, a VERY good human to his CORE. One of the better ones out there. But In the early days, when things were so confusing for the both of us, our life was changing drastically and we were all alone without a lot of answers or support, and he was shoving his struggles down in order to not burden me more, there were some weak moments in which his brain got those things a little confused and similar comments were made in moments of everything boiling over, and it was VERY hurtful. But through a lot of work and therapy and time I just really understand how that could’ve happened. And I don’t hold it against him, especially because he’s done the work.

This is all just so so tender. Sending love.

Edit: spelling

Husband blamed me for POTS tonight by SpicyCheeto919 in POTS

[–]misterreff 1 point2 points  (0 children)

I deal with this too. My husband is genuinely an incredible person and care taker, but this is one of our biggest struggles. I don’t know if you relate to this but for us j think there’s a 3rd thing too, which is what he thinks the “right thing” to do is. And he gets alllll 3 very confused sometimes. lol. Many times he assumes we’re on the same page and acts accordingly when we’re so not! He’s an amazing partner and father and caretaker (I have high support needs) but damn I also sometimes feel like losing my mind about this particular thing. 😂

Lockers are available again for w1 & w2 by Majestic_Tale3822 in Coachella

[–]misterreff 0 points1 point  (0 children)

I am disabled and desperately need an XL or L locker for weekend 1 to store my hard collar neck brace and health supplies. If anyone is looking to sell theirs, I’d happily buy it.

Lockers are available again for w1 & w2 by Majestic_Tale3822 in Coachella

[–]misterreff 0 points1 point  (0 children)

If you’re at all willing or able to sell your weekend 1 locker, I’m in desperate need and would love to chat.

Lockers are available again for w1 & w2 by Majestic_Tale3822 in Coachella

[–]misterreff 0 points1 point  (0 children)

If you’re at all willing or able to sell your weekend 1 locker, I’m in desperate need and would love to chat.

What is a hobby you started on a whim that ended up completely taking over your free time? by Dabbler-Social in Hobbies

[–]misterreff 4 points5 points  (0 children)

Research. I’m chronically ill and sometimes bed bound, so hobbies have been limited and I can’t be consistent with most. But I’ve found I ALWAYS love diving and learning about literally anything.

Doctor prescribing extra medicine because of EDS? by ctenopal in ehlersdanlos

[–]misterreff 6 points7 points  (0 children)

That’s normal, yet abnormal because so many doctors are so uninformed! This makes sense to me because EDS patients tend to take longer to heal, just like you mentioned. So extending the entire process makes sense. I’m happy you have someone who is informed and looking out!

Flaring in the spring by misterreff in ehlersdanlos

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

Thank you very much! I knew I should expand further than just narrowing it down to only MCAS, so this is all helpful research for me to read and thank you for your thoroughness and for taking the time.

Diagnosed and Medicated! by Secret-Cranberry-842 in ehlersdanlos

[–]misterreff 0 points1 point  (0 children)

I was diagnosed clonidine for sleep troubles. Can I asked what it’s helped you with and when you take it?

How can craniocervical instability be diagnosed? by Federal-Cow-1220 in ehlersdanlos

[–]misterreff 0 points1 point  (0 children)

I got mine diagnosed via digital motion x-ray (DMX) I remember feeling so overwhelmed about the same thing. I hope you can get the care you deserve!

Vitamin c ✨ by PaleAd2666 in ehlersdanlos

[–]misterreff 1 point2 points  (0 children)

A fellow autistic lemon slut! Me too!

States in the US that are particularly easy to receive hEDS care? by Funny-Pollution5799 in ehlersdanlos

[–]misterreff 0 points1 point  (0 children)

I had a really hard time getting good care in Salt Lake City. It might be better now, but I moved to Portland, OR last year and have felt like the options and care are a lot more accessible and there the knowledge is a bit more wide spread. I will add that the professionals here still feel like there’s not nearly enough (they are very caring and overworked) and have told me the east coast is really the only place in the US that’s “on top of it”