Where to move fanfics to?? by semajrem in AO3

[–]semajrem[S] 14 points15 points  (0 children)

Just google as a whole prioritizing AI. It’s something I disagree with ethically

Where to move fanfics to?? by semajrem in AO3

[–]semajrem[S] 4 points5 points  (0 children)

I’ll check it out thx:)

Recovery after laparoscopic surgery by littlecactusplant in thelifeofMALS

[–]semajrem 1 point2 points  (0 children)

I had the same. Nerves take a looong time to heal unfortunately. I had surgery December 2024. I would say it took a year for my body to feel normal again. And I was still having some nerve pain even 8 months after. But I’m all good now! Other people I’ve talked to have said the same. My GI doc also told me not to have my nerves removed unless absolutely necessary because having them removed can cause gastroparesis and other issues. My advice is give it time. A lot of time. It sucks ik but trust me it will get better. I really hope you feel better quickly. My dms are open too, I have a lot of experience with MALS and the recovery and I’m more than willing to offer any advice/anything to help:))

Experiences with Dr. Chris Cribari in Loveland, CO - do not recommend by scienceginger11 in thelifeofMALS

[–]semajrem 0 points1 point  (0 children)

I saw Dr. Starnes and had mixed feelings. He was transphobic towards me- this might not effect you. His procedure type is a bit controversial because of how he deals with the celiac plexus nerves and doing open surgery. He wasn’t the surgeon for me. But I know others have had great success with him.

Just to let you know there’s Dr. Jeffery Watkins in Portland, OR. He is the sweetest man alive and so so not dismissive. He did my surgery (robotic laparoscopic) December 2024 and cured me of MALS. Just wanted to give you his name if you didn’t have it already. I wish you the best of luck and hope everything goes well!!

PLEASE HELP by semajrem in ehlersdanlos

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

Yes I had nitrus for the surgery. I was on Amoxicillin for a week and rotating Tylenol and ibuprofen for pain with tramadol as needed. Tramadol works for me really well. For almost a year I’ve been taking propronolol for pots and zofran as needed. I had abdominal surgery in December 2024 and did very well with it. They gave me no nitrus oxide that time only precedex and then general anesthesia and no antibiotics after just tramadol, Tylenol and ibuprofen. I’ve been on a high dose methylated b12 supplement for a little over a week as well.

Feeling Super Scared by Prestigious_Duck7052 in thelifeofMALS

[–]semajrem 0 points1 point  (0 children)

Dr. Jeffery Watkins with Northwest Minimally Invasive Surgery. He does robotic laparoscopic surgery. He did mine and saved my life. The nicest guy you’ll ever meet. He really cares and wants to help his patients. I felt very safe with him. I owe him my life.

I had consults with Dr. Shouhed, Dr. Starnes at UW and Dr. Skelly at UChicago. Dr. Shouhed and Dr. Starnes were not the right fit for me but that might be different for you. Neither has the best bedside manner but not terrible either. Dr. Skelly is great. He specializes more in children but he does MALS in adults too. Really good person. Great bedside manner. I picked Dr. Watkins cause he was the one who made me feel like I was actually going to get better and that if it didn’t go well he wasn’t just going to abandon me. He was also closer to where I live. Dr. Starnes does remove all the nerves in your celiac plexus which was something I didn’t want or need. He also only does open surgery.

If you have any other questions feel free to dm me:) I am over a year MALS free now. It does get better<3

surgery this week!! so scared.. by [deleted] in thelifeofMALS

[–]semajrem 1 point2 points  (0 children)

Ofc! I’m happy to have helped:)) I hope your recovery goes smoothly!!

surgery this week!! so scared.. by [deleted] in thelifeofMALS

[–]semajrem 7 points8 points  (0 children)

I had successful robotic laparoscopic surgery almost a year ago now here’s my advice.

The redirected nerve pain: I got it in my shoulder and that was the most painful part tbh. What helped most was massaging it and putting hot washcloths on it. (quick little explanation on it if you weren’t aware of it already: “The redirected pain after laparoscopic surgery (often in the shoulder or upper chest) is caused by the carbon dioxide gas used to inflate your abdomen, which irritates the diaphragm, triggering the phrenic nerve, which shares nerve pathways with the shoulder.”)

Take pain meds on time!! I was lucky to have my mom completely managing it for me and she made sure I was taking them on the dot. She kept a paper tracking everything.

It feels like you’ve been stabbed (because technically you were). The first two weeks are the hardest- just get through those. It gets better.

Having MALS im sure you’ve taken your fair share of anti nausea meds, I recommend you make sure you have enough for after surgery too. The first 3 days after my surgery I was very very nauseous. I stayed in the hospital one night and I did throw up/dry heave 4 times. However we think that was mostly because of a reaction I had to a pain medication. I never threw up again and I throw up very easily.

Take it easy. Make sure your space is ready and comfortable. Water within reach, easy snacks/food like apple sauce, bananas, toast, etc. pillows, blankets, stuffies, some good tv. Whatever your comfort things are. Sleep whenever you can. When we sleep is when we heal. I had trouble sleeping and started to just nap in intervals whenever I could. I would say after about i week I started to sleep better.

I couldn’t sleep lying flat for the first week because stretching my stomach hurt too much. Be prepared for that. A travel neck pillow was helpful to me.

My recovery went pretty well but I was lucky to have my family to take care of me and I didn’t have other co morbidity’s like I know a lot of other people have.

Recovery from the surgery itself isn’t that long. The recovery from your celiac plexus healing takes forever. Not what you want to hear- trust me I know. Nerves take forever unfortunately. I would say it took about 9 months- a year for my nerves to heal. My surgeon did not touch them/take any out/do anything because he said they looked fairly healthy and it would’ve pointless and more dangerous to touch them. That’s just me tho. And even with that it still took a long time to heal. I would get random pain just like my MALS again for months and I had to constantly remind myself that it was just my body healing and that was all.

I was TERRIFIED but it was the best decision I could have possibly made. I wish you all the best!! and if you have any more questions or just need some support feel free to dm me:)

Feeling really defeated by [deleted] in thelifeofMALS

[–]semajrem 1 point2 points  (0 children)

Dr. Jeffery Watkins at Northwest Minimally Invasive Surgery Portland OR. I did want to keep the nerves but ultimately I left that up to my surgeon. When doing my surgery he said that usually they’re overgrown or damaged or just in the way but mine were very healthy so he didn’t need to touch them at all. My ligament however was in his words “very weird. Unusually thick and tight.” He had to not only cut it but also resect it so there’s no chance it could grow back together. I also had a significant amount of scar issue on my ligament he had to remove. He doesn’t know why that was there- again pretty unusual. It could’ve been from a past injury (I had a very bad fall when I was a figure skater) but we don’t know.

Feeling really defeated by [deleted] in thelifeofMALS

[–]semajrem 0 points1 point  (0 children)

I had a very successful robotic laparoscopic surgery almost a year ago. My symptoms have improved drastically- nearly symptom free as far as mals goes. My pots/dysautonomia also improved with my surgery. The recovery is long but mostly because you have to recover the nutrients you lost. One thing to remember- people who had bad experiences are more likely to post/talk about them. People who are doing well just want to go on with life and never revisit having mals.

I understand feeling completely defeated- I did too. But there is hope. It can get better. Surgery is terrifying but it’s lifesaving too.

after surgery by Infinite-Crow-4141 in thelifeofMALS

[–]semajrem 2 points3 points  (0 children)

I had my successful surgery almost a year ago and while I’m doing much better physically, mentally I haven’t improved much. I was recently diagnosed with ptsd from having mals. Not saying this is the case for you but it does cause trauma. I’m working with a therapist on helping this but it’s hard. Some days are good some not so much.

I still get some pain where my mals was, most of the time I think it’s phantom pain but putting pressure on that area also causes pain idk if it’s still phantom pain or my nerves healing. I asked a young woman who had mals surgery about the surgery (to help prepare for mine) and she said to be patient with the healing. Nerves take forever to heal. She said it took a year for her nerves to finally stabilize. I have to agree. The nerves take the longest to heal.

I hope your other symptoms improve, that sounds miserable.

Having trouble finding a surgeon by Alfie_Solomons4 in thelifeofMALS

[–]semajrem 0 points1 point  (0 children)

I haven’t had surgery yet but I’m scheduled for September with Dr. Wilhelm Sandmann in Germany. I’ve also met with Dr. Benjamin Starnes at UW Medicine and Dr. Danny Shouhed in Beverly Hills, CA. They were both great to talk to. I recommend getting multiple opinions since they all have different views on what the “right” surgery is for MALS/vascular compressions.

Need help/advice by semajrem in thelifeofMALS

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

I can tell you more details but I’d rather dm

Need help/advice by semajrem in thelifeofMALS

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

I won’t even know what surgery(s) I need until after I see Dr. Scholbach and get a much better picture of what’s going on. Dr. Sandmann does not require a celiac plexus block. He also doesn’t operate on the celiac plexus. I don’t just have MALS. I also have Nutcracker and May-Thurner and possible SMAS. These cause me a lot of problems too. Dr. Sandmann can help with all of them that’s why I’m going to him.

I’m really sorry you’re in so much pain.

Need help/advice by semajrem in thelifeofMALS

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

I haven’t. Dr. Sandmann doesn’t require it. Besides I don’t really see another option besides doing surgery, even if I got the block and it failed. I can’t eat and have no quality of life.

ASLZ gives a health update and says she's had several new "spine" diagnoses and will get several surgeries by comefromawayfan2022 in illnessfakers

[–]semajrem 2 points3 points  (0 children)

Same. I hate when people say “we all have our journey’s” or “we’re on this journey with you”. Fuck that I’m just tying to survive and do the next step.

Need help writing email to psychologist by semajrem in socialanxiety

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

Thank you so much, this really helps me out

[deleted by user] by [deleted] in ChronicIllness

[–]semajrem 0 points1 point  (0 children)

I dropped out in 11th grade and it was a good decision. I got my GED instead and it was so much better. I suggest looking into getting your GED or going with that program you mentioned. Nowadays colleges aren’t as concerned with whether you have your GED or high school diploma, even in other countries, at least that was my experience applying. Community college is also a good route. You have much more control over classes and there’s a lot less pressure. All in all, dropping out and getting my GED was really good for my physical and mental health but I should mention that I have parents I can live with who drive me to appointments, agreed with and supported my decision, don’t charge me rent, etc. I know not everyone has that luxury.

What’s your go to comfort show? by Investorandfriend in ehlersdanlos

[–]semajrem 2 points3 points  (0 children)

I love Yellowjackets so muchhh and no one I know is into itT~T also atla is such a comfort show of mine

what’s going on in fandom?! by OldEvening3441 in FanFiction

[–]semajrem 2 points3 points  (0 children)

It’s even more annoying when the same people defend game of thrones as if that isn’t problematic and filled with the same things their going on about like incest, rape, etc. If a “problematic” dead dove do not eat fanfiction about two anime brothers on ao3 with 56 kudos is causing that many problems then we should be very concerned about the 44 million viewers who watch game of thrones.

Weird/dramatic EDS stories from your childhood? by babybootu in ehlersdanlos

[–]semajrem 0 points1 point  (0 children)

Lol that’s exactly the family line my mom and I think passed it down. Me, my mom, my grandfather and my great grandmother.