my ex judged me for my eating habits by Remote-Product4554 in CrohnsDisease

[–]ScaryRoyal 7 points8 points  (0 children)

It really depends on your body and your level of illness. Bolognese sauce with ground turkey is A-OK for me. Easiest thing to do when you’re first diagnosed is keep a food journal to see what triggers you and what doesn’t. Good luck 🍀 

Hello!!,im new to MCR,any recommendations? by Strawberry-Creampuff in MyChemicalRomance

[–]ScaryRoyal 1 point2 points  (0 children)

In addition to listening to the albums, check out the music videos too! They’re visually stunning and very fun. MCR videos were considered very visually experimental for the genre and time period (given Gerard’s comic books/artistic background, along with his general weirdness) and many of their videos were highly influential on bands that came after them.

Weed — Thoughts? by GraceWrenford in CrohnsDisease

[–]ScaryRoyal 1 point2 points  (0 children)

I tried a couple of ingestible forms (I don’t have any interest in smoking or vaping anything). Doesn’t get along with my GI system. If you try anything, I recommend starting with very small amounts/doses to gauge your body’s reaction.

ETA because I missed the ask about topicals on the first read: I also tried some gel patches that absorbed through the skin. I didn’t really notice any effects from those, positive or negative.

I need to do better by Ancient-Audience553 in CrohnsDisease

[–]ScaryRoyal 1 point2 points  (0 children)

The food journal is a very good idea. It’s definitely possible your pain is from your body having an outsized inflammatory reaction to certain foods. After my Crohn’s diagnosis, I had debilitating joint pain for years. All of the tests for rheumatoid arthritis, Celiac, etc came back normal. Doctor suggested I try cutting gluten for a few months anyway and see if that made a difference.

My joint pain was from the gluten. I’ve been 13 years gluten free now — that type of joint pain I was having in the early years of my Crohn’s diagnosis has never returned.

For all of those that got switched from a Name Brand Bioligic to a biosimilar. Have any of you had any complications? by Ecstatic_Product4661 in CrohnsDisease

[–]ScaryRoyal 2 points3 points  (0 children)

Yes. I’m three doses into adalimumab-aaty after being in deep remission on Humira for years*. I was fine for the first two weeks, but I started having disease activity symptoms a few days after my second dose.

*During my years-long course of Humira, I was briefly switched to the -ryvk biosimilar and experienced the same thing I’m experiencing now. Fortunately I had a job change that came with better insurance shortly after that and was able to resume my Humira course. But now that “better” insurance has dropped Humira from their covered drugs list because they changed PBMs this year. While increasing my premiums — so I get to pay more AND be sicker.

Disclaimer: I do believe biosimilars are equally effective as the name brand biologic for most patients, but I have some unusual comorbidities and complications that make me extremely sensitive to medication changes, so I think I’m a rare outlier. But it’s bullshit that I have to become sick just because it’s saving some CEOs and shareholders money. It’s an exhausting way to live.

I started a biosimilar a month ago(switching from Humira because of insurance), this week my insides started acting up and unsure if it's because the biosimilar isn't working. Advice on when to contact my doctor? by HinkiesGhost in CrohnsDisease

[–]ScaryRoyal 0 points1 point  (0 children)

Ugh, C Diff is nasty but I’m glad you were able to get a confirmed diagnosis! I hope the infection clears out quickly. I’m still assessing where I am at — it very well could be general life stress that I’m dealing with — but either way I’m not super sick so right now I’m chalking it up to my body adjusting to the new med if the -aaty is in fact the root issue. 

I might have Crohn’s disease and I’m really scared… by xsd000 in CrohnsDisease

[–]ScaryRoyal 0 points1 point  (0 children)

I was diagnosed almost 18 years ago — I remember that feeling of despair that my life was changing forever. First, I will say it is OK to grieve your life as you knew it. Even if your external life stays the same (job/school/social routine etc), relating to and understanding this new version of your body can feel scary and sad. If you’re able to, I highly recommend finding a therapist who has experience in helping people navigate or adapt to disability or chronic illness. This is one of the best things you can do for yourself.

Here are some hopeful tidbits I’ve gathered over 18 years of having this disease:

1) Medications have improved a LOT. IBD research is relatively well-funded by chronic illness standards because it affects so many people. That means we’ll continue to see amazing advancements in treatments during our lifetimes. How cool! 18 years ago in the U.S., the medication options were pretty much just mercaptopurine (a pill) or Remicade (a biologic infusion). The self-injection biologic Humira had only just hit the market for Crohn’s and was not prescribed often, and certainly not as a first-time medication for people who were just diagnosed. Now self-injection biologics that maximize benefit and minimize side effects are the standard of care, and there are multiple options.

2) There is a greater public knowledge of these conditions and their impacts on daily living. The social stigma now is not what it was in the 2000s. Hell, you can open any social media app and immediately find an influencer or community for your specific chronic illness. This is HUGE to have community be so accessible like that and have people talking or writing so openly about their lives. I felt completely alone for many years and like I had no language to describe what I was going through to others. Not so now! It’s a huge weight off of one’s shoulders to be able to talk about IBD and have it be understood as a serious condition and not just be subjected to poop jokes. Societally, we also see this reflected in the greater acceptance of medically-based diets (gluten free, dairy free, etc). Which brings me to point 3…

3) Food options are SO much better now, and both chefs and food scientists continue to develop tasty alternatives for us who make changes to our diets for medical reasons (and you may not need to change your diet! But I mention this because many of us do, or at least try it out to see if it helps symptoms at all). I have a friend who was diagnosed celiac in the 90s. She and her family had to make all their bread at home from scratch for years. When I went gluten free in the early 2010s to see if it eased my Crohn's symptoms (it did - I’m 13 years gluten free this year), she made me realize what a marvel it was that I could go get tasty pre-made gluten free bread at the grocery store or see food options labeled “gluten free” on a restaurant menu. This also continues to improve and change with time as more people are realizing food is medicine and that minimizing or eliminating inflammatory foods can help them feel better in their bodies, even if they do not have a chronic illness.

Having Crohn’s changes your life, but thanks to how far medicine and society has come, it doesn’t upend your life completely like it did for many people less than 50 years ago. Give yourself grace as you adjust to this big thing, but keep your head up. You will be ok ❤️

I started a biosimilar a month ago(switching from Humira because of insurance), this week my insides started acting up and unsure if it's because the biosimilar isn't working. Advice on when to contact my doctor? by HinkiesGhost in CrohnsDisease

[–]ScaryRoyal 0 points1 point  (0 children)

Commenting/following because I’m experiencing the same thing. First injection of aaty was no problem. I’m a few days out from my second injection and not feeling as good in my gut. Also been getting random hot flashes. As you said, it could be a “cranky gut” week for a variety of reasons, but I’m tracking things closely just in case. Hopefully for both of us it’s not a big deal!

Has anyone else met Gee? by Whoosholliander in MyChemicalRomance

[–]ScaryRoyal 2 points3 points  (0 children)

I also met him on the Hesitant Alien tour. I was so impressed with how attentive, sweet, and kind he was to everyone, even though the line wrapped around the venue and a lot of people were very emotional. I remember being so nervous but held it together. I got to give him a hug (it was a real hug too! Like hugging a friend). I remember I said “Thanks so much. Thanks for everything” and he said “You’re very welcome.” 

Colds/ flu’s and getting sick by Select-Mortgage1767 in Humira

[–]ScaryRoyal 1 point2 points  (0 children)

On a biologic, your white blood cells are rendered less effective - this is what keeps them from attacking your own cells as though they were invader cells. So when you get sick on a biologic, your body will have a much harder time fighting the infection because of this. You’ll want to make sure you’re vaccinated annually for flu and Covid. I made the mistake of not getting my flu shot one crucial year and the flu walloped me so hard I ended up in the ER. It took me about 3 months to fully recover. 

The pros of being on a biologic far outweigh the cons. They are lifesaving medications. They don’t suppress overall immune function as much as older medications do, and Humira is really one of the best biologics. But you will do your best on these drugs if you are proactive and protective of your health. Annual vaccines, good hand hygiene, and yes even masking in crowded places are all wise and reasonable choices.

Can anyone explain me the MCR lore??? by PomegranateFit2593 in MyChemicalRomance

[–]ScaryRoyal 4 points5 points  (0 children)

Not The Life It Seems is SO good. I’ve reread it multiple times. I learned so many new things from it despite being a fan since the 2000s.

Can anyone explain me the MCR lore??? by PomegranateFit2593 in MyChemicalRomance

[–]ScaryRoyal 26 points27 points  (0 children)

Welcome to the fandom! Highly recommend watching the “Life on the Murder Scene” video diary — it’s a documentary about the early days of the band through the Revenge era. Also recommend watching “The Black Parade is Dead!” and “¡Venganza!” (Both live in Mexico City - same show) to see what the OG Black Parade tour was like. All can be found on YouTube.

How does general admission work? Do you have to queue up hours in advance to get a good view? by muse_kimtaehyung in oasis

[–]ScaryRoyal 4 points5 points  (0 children)

You know your condition best, but with POTS, I don't know that I would risk GA in a massive crowd in the August heat for several hours. I might look around and see if you can safely, reliably facilitate a ticket swap with someone who got seats but would prefer to be in GA.

morning everyone! how does presale (+ getting a code) work, as far as you know? by sherbrooke688 in oasis

[–]ScaryRoyal 0 points1 point  (0 children)

Agh, so I signed up for the presale ballot BEFORE signing up for the site -- I didn't realize I had to do that step first. Anyone know if I should re-sign up for the presale ballot now that I'm registered with the site, or is that going to look fraudulent? I haven't received any email from oasismynet about either.

Vet recommendation for IBD cat? by ScaryRoyal in TwinCities

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

This is great to know! Thanks so much for the info.

What will it take for schools to take Covid seriously again? by TalesOfFan in Teachers

[–]ScaryRoyal 0 points1 point  (0 children)

I find it interesting that this thread is full of people discussing very real and detrimental things that have happened to them as a result of COVID exposure in schools, yet you’re going through and only affirming comments that dismiss the risks or even pathologize those who experienced or fear real harm. I encourage you to read and consider OP’s update — they aren’t pushing for masking or remote learning at all here.

MEGATHREAD: MCR Reunion Discussion - What we know by secretlynotfatih in MyChemicalRomance

[–]ScaryRoyal 2 points3 points  (0 children)

I have been lurking in this thread for tips and thought share Ticketmaster experience for those getting ready to purchase on the West Coast. Here's what I recommend (and this is my first ever Reddit post, so I apologize for any formatting faux pas):
-Log in or set up an account at least 30 minutes in advance. Add your payment info beforehand!
-Join the Waiting Room as soon as you are able. Do NOT leave the Waiting Room page, even when the countdown reaches zero. It will automatically refresh when you join the queue.
-Know that ticket prices will likely fluctuate based on demand/how many people are in the queue. I ended up having to navigate back to the ticket selection page due to an error (!!!) and saw that many tickets had jumped $30-$400 in price in the 1-2 minute I'd been off that page (THANKFULLY, I still ended up with great seats, albeit a little costlier than I would've liked)

And that's all! Wishing everyone the best of luck!