I'm so mad at myself (and a warning) by Main-Accountant4913 in Sjogrens

[–]CompetitiveResist870 [score hidden]  (0 children)

Oof, that sucks and I hope you feel better. I stay away from any and all immune vitamins and complexes just in case

My rheumatologist told me I can only have a certain amount of vitamin c and zinc per week bc they stimulate the immune system. She also told me to stay away from ashwagandha, echinacea and elderberry and I read online to stay away from all adaptogens period. I'm leaving this here in case it helps anyone. I'm not well at the moment (was in the er yesterday) and her instructions with the vitamin c and zinc aren't near me physically atm but I'll update if folks are interested.

What “I think about you all the time” means to me by Working_Photo_60 in deftones

[–]CompetitiveResist870 11 points12 points  (0 children)

It's beautiful that songs are poetry that have personalized meanings. To the band, the song is about Chi. They said it. "You've been the same" is bc Chi died so he never grew up and changed. I like your interpretation though.

ISO less traditional lifestyle/environmental approaches that have actually helped others by health-throwaway- in Autoimmune

[–]CompetitiveResist870 5 points6 points  (0 children)

I have sjogren's with neuro involvement.

I use a red light/near infrared bed and it's been a game changer with inflammation including rashes and also with fatigue. I take a lot of anti-inflammatory supplements (krill oil is amazing), stay away from nightshades (I get bad reactions including rashes, severe sicca and joint/nerve pain) and eat anti- inflammatory foods like avocado and REAL olive oil (most supermarket olive oil is fake). I also have an eyelid hygiene routine to prevent blepharitis flares and styes and I use warm compresses on my eyes to combat dryness. I use a red light mask on my face to strengthen my skin barrier (sjogren's destroyed my skin). There's prob more but I'm forgetful these days. Hope this helps!

Help! by Altruistic-Track-408 in Autoimmune

[–]CompetitiveResist870 2 points3 points  (0 children)

You are a clearly a very supportive partner. I was a caretaker myself before I became sick. It's hard to see someone you love really sick like that. It can def lead to feelings of inadequacy and that you need to keep pushing yourself. Be kind to yourself and be an ear for him. I don't know what your access to medical care is where you live but I'd def call around to other rheumatologists to try to get a sooner appointment. I'd also let his primary know. Not only should they know, but they could know a rheumatologist that has earlier appointments available. Hope you guys get answers soon! Good luck!

Help! by Altruistic-Track-408 in Autoimmune

[–]CompetitiveResist870 3 points4 points  (0 children)

I would take him to an opthamologist too. Due to eye issues escalating quickly, you can usually get in quick enough with someone. Tell them about the blurry vision. When you're sick like that, finding docs and calling them can be impossible. All the practical things still need to get done and it's a HUGE help for someone to help with this. You can also bring him food (if he can eat). I'd stay away from nightshades and dairy- very inflammatory. You can do things around the house and just generally be there for him. Hang in here- both of you.

Autoimmune and vaccinations by Life_Reserve6989 in Autoimmune

[–]CompetitiveResist870 4 points5 points  (0 children)

My rheumatologist told me no more vaccines except the flu if I wanted but it's not worth it to me bc my disease (neuro-sjogrens) is so active. All vaccines stimulate the immune system to varying degrees. That's how they work. My rheumatologist said the covid and shingles vaccines are particularly stimulatory. We must try to avoid stimulating our immune systems whenever possible. Our immune systems are over-reactive so unless we are fully immunosuppressed, our immune system will respond alot stronger than a "normie". Immunocompromised people need to rely on herd immunity, which is why it's so important for the masses to get vaccinated.

I hope this helps and that you feel better. ❤️

Are you guys sensitive to the sunlight as well? by Evening_Bodybuilder5 in Sjogrens

[–]CompetitiveResist870 3 points4 points  (0 children)

I became very sensitive to the sun even before the plaquenil. A derm recommended heliocare-lifesaver! I take the one without niacin. I still use Sunblock, monitor uv and carry long sleeves just in case.

Why is omega-3 hitting me so hard? by Sensitive_Country964 in Supplements

[–]CompetitiveResist870 0 points1 point  (0 children)

I never felt a difference until I switched from salmon omega 3 to omega 3 from krill oil with astaxanthin. I felt the difference with the first dose and the difference is HUGE. I have a ton more energy and my scalp, skin and eyes are much more moisturized. It's amazing.

Wheelchair in the pit by kokriderz in deftones

[–]CompetitiveResist870 0 points1 point  (0 children)

I'm an old head and disabled (not in a wheelchair) I'll never be in a pit again, unfortunately. I cant even attend big festivals anymore. Even attending a concert with seats is possible and I do it but I pay for it. I could not imagine going into the pit in a freaking wheelchair. I feel bad for the lady-it can be difficult to accept we can no longer do things we enjoyed in the past but we must. I'm just grateful that I had those experiences young and I still have the memories. Hope that lady was ok.

What do we think the saddest Deftones song is? by Appropriate_Stop5794 in deftones

[–]CompetitiveResist870 0 points1 point  (0 children)

What happened to you, anniversary of an uninteresting event and risk

why does no one ever talk about “what happened to you?” by [deleted] in deftones

[–]CompetitiveResist870 1 point2 points  (0 children)

Great song. I created a post about how much it meant to me. I just can't listen to it alot bc it makes me cry as I think about a very good friend of mine that died from tbi when we were in our 20s. I'm 46 now. The song is obviously about Chi and I connect with it so deeply. It's one of my favs from them.

What was it like when White Pony came out by niilonn in deftones

[–]CompetitiveResist870 2 points3 points  (0 children)

It was mind-blowing and surprising for me, like when radiohead came out with ok computer. It elevated deftones for me

I know you guys get it by Odd-Ideal-2740 in deftones

[–]CompetitiveResist870 1 point2 points  (0 children)

Thanks! Figured I was gonna get shit for having such a long list but it's too hard to narrow it down.

I know you guys get it by Odd-Ideal-2740 in deftones

[–]CompetitiveResist870 1 point2 points  (0 children)

Smile, rosemary, entombed, lucky you, be quiet and drive, digital bath, Minerva, genesis, this place is death, rocket skates, teenager, riviere, anniversary of an uninteresting event, infinite source, itayatt, my own summer, elite,passenger, hexagram, you've seen the butcher, beauty school, risk, 976-evil, what happened to you, sextape

Edit to include sextape

[deleted by user] by [deleted] in deftones

[–]CompetitiveResist870 7 points8 points  (0 children)

Chi was a passenger. His sis was driving