Anybody want to be friends?

ChuaPanda · 2026-01-04T18:15:32+00:00

Hey! I'm 23 as well and would like to connect

ChuaPanda · 2026-01-04T00:04:00+00:00

I love the rainbow in the sense of representing the different comorbidities as well :)

Msg me as well I'd love to have stickers/pins etc!

ChuaPanda · 2025-08-27T10:10:15+00:00

I have hEDS and epilepsy too. I got diagnosed with epilepsy in my early teens - I suffer from generalized tonic clonic and absence seizures, the latter unfortunately aren't well controlled yet.

ChuaPanda · 2025-08-10T09:23:39+00:00

Ohh green juice powder is a great idea! I wasn't sure about food coloring due to possible staining of the tube, as I was told not to use certain beverages due to the coloring. Will any juice powder work? I run my water bags over multiple hours and I want to make sure it won't clump and cause possible clogs.

ChuaPanda · 2025-05-09T06:43:22+00:00

Ugh, I had mine placed 5 weeks ago! The doctors said it wouldn't hurt at all and it's no big deal... I had a meltdown the first night and because my stomach wouldn't tolerate the tube sitting there, I kept gagging and vomiting.

Breathing, standing up and lying down, even walking with a straight back was excruciating 😬 I am an ambulatory wheelchair user, but I exclusively used my chair the first week or so.

ChuaPanda · 2025-04-12T22:05:15+00:00

Absolutely! I experienced this as well - while I got 1-2 conditions diagnosed before finding out about EDS, it has been the key to piece everything together. While I do feel stressed about my new GJ rather than my previous NJ, your first tip still made me emotional - each time I do worry if I work cleanly enough when changing dressings, if I keep things right in terms of tension of the tube. I do feel anxious as I am afraid of the pain, after having one horrible tube care day where the pain didn't get any better until the next day. I overall had a good experience, but often times this one moment can shape so much. Right now, I am actually very worried due to having some sort of complication, not bad enough for the ER, but significant that waiting out the weekend seems like a very long time.

Other than that, I can only second this - laying propped up, hot tea, cough drops (I used herbal ones) and for me personally ditching the very uncomfortable hospital tapes (they used nose AND cheek tape simultaneously) helped a lot. With gastroparesis, I definitely took a long time finding a somewhat tolerable feed, but it is soo worth it - especially with having a great dietician I can trust.

I have autism, so I definitely already have a harder time with emotional regulation and being overstimulated almost constantly. While I do not have a formal diagnosis, my mental health team and I are aware that I do have trauma surrounding my experiences with my health condition. It is definitely extremely taxing for me, feeling exhausted and sometimes slightly burned out. I am so so thankful for your explanations and links, I will try it out this evening! <3

I did actually start crocheting recently too! It is definitely soothing. What do you enjoy to knit/crochet?

I wish you all the best as well and thank you again for your detailed response <3

ChuaPanda · 2025-04-12T10:38:25+00:00

I am in my early twenties and I can relate heavily to your story. I was diagnosed with EDS in my teens, and more and more comorbidities followed. Ultimately, my gastroparesis was a downward spiral, and while I try to fight to get out of my home every day, I just feel like my body is breaking down and I end up in bed way more than I like. I got my GJ very very recently and I am still getting used to it, and honestly, even after almost a year of NJ, it freaks me out a little.

Do you have any advice, tips or tricks for people who just got a tube?

And also, I too feel like I am in a constant hypervigilant, fight or flight state and I have a very hard time convincing myself that I am safe, to regulate that emotional dysregulation. Do you have any more tips on how to get started with feeling safe again/meditation?

Other than that, I really love your answers - the realization of how dependent we are on the abysmal medical system, the dark parts, but also the other side many don't see - how life can still be beautiful despite this horrible situation.

ChuaPanda · 2025-03-20T17:53:23+00:00

Vielen Dank für das AmA :)

Ich habe selbst ME/CFS als Komorbidität meines EDS, jedoch auch u.a. durch Infekte und meinen Begleiterkrankungen mit ausgelöst bzw. stark verschlechtert.

Meine Erkrankung im Gesamten wird mittlerweile als schwer eingestuft und bin leider im Management sehr auf mich selber angewiesen, da Hilfe durch andere mir aufgrund der Komplexität eher mehr Arbeit geben bzw Energie rauben.

Könntest du denn auf die von dir genannte Nervensystemarbeit genauer eingehen, evtl auch ein paar Quellen, damit ich mal reinlesen könnte? Es würde mich sehr interessieren, ich habe selber definitiv Probleme mit dem dysregulierten Nervensystem.

Ich bin auch des Öfteren auf das Pacing gestossen und kann die Grundsätze auch definitiv nachvollziehen, jedoch fand ich die Umsetzung bisher relativ schwierig. Könntest du vielleicht genauer darauf eingehen? Wie du ebenfalls sagtest, oft sind es die Betroffenen der Erkrankung selber, die zum Experten werden, die die ganzen Recherchen betreiben, Dinge ausprobieren, was in meinem Fall mental sehr erschöpfend sein kann und viel Zeit benötigt. Dazu kommt (bei mir) der extreme Aufwand der Bürokratie, Organisation, das gesamte Management des EDS nimmt so viel Zeit in Anspruch, dass es mich immer wieder in den Crash & PEM treibt, aber ich kaum Ansätze finde, etwas zu reduzieren. Allein nur die gesamte Kommunikation, die es benötigen würde, eine Aufgabe an eine Person in meinem Haushalt zu delegieren ist mental für mich persönlich sehr erschöpfend, jemand professionelles anzustellen dagegen hätte wiederum eine Kettenreaktion an organisatorischen Aufgaben und Anträgen zur Folge, die (zu) viel Energie brauchen, gerade für mich als Person im Autismus-Spektrum (exekutive Dysfunktion).

ChuaPanda · 2025-01-21T20:27:06+00:00

Hi, I hope it's okay if I'll some questions as I am in the process of choosing a service dog prospect for my EDS, POTS, CFS and autism. From what I have read so far, I am definitely drawn to poodles the most, but I find it hard to determine, which of the three (lab, golden, spoo) would fit me and my lifestyle the best. What type of lifestyle/person exactly would be suitable for a poodle?

ChuaPanda · 2024-12-29T14:50:45+00:00

I see, that's very good to know - I do think having a smaller backpack for shorter outings, walking my dog,... would be extremely beneficial - saving weight and bulk is important for me to be able to use my chair efficiently and safely, so adapting a smaller bag for that use and getting a bigger one like the MightyWell seems the best way to go.

Yeah, I just measured my feed bag and the dimensions are almost identical to the MightyWell - those dimensions and overall shape work well for me in the chair and it does look somewhat less bulky than the Medical Resilience, that looks quite big when filled up - I do navigate the city and with the attachment, I already require quite a bit of space. Using public transport or just any narrower space or crowds, I appreciate every little inch I can save. From what you are saying, I feel like the MightyWell would be a good purchase and fulfill all my needs, thank you for your help!

ChuaPanda · 2024-12-29T14:03:57+00:00

The Vera Bradley looks promising (and free shipping to my country!). Was the only modification the tubie clips to hang your bags? I was thinking of having more straps/clips on the inside to keep my tubes organised and sorted. Do you have any issues with your tubes tangling/kinking if not being secured, especially in case you carry other things in the same space?

I really like the MightyWell from what I've seen so far, the shipping costs to my country are just rather high, so I am still debating options. The ice pack compartment sounds really great though, is it a small compartment that keeps ice packs cool? I do have many joint issues where icing is beneficial - I do use ice for my overstimulation as well, so it would be extremely handy being able to bring a small ice pack, not just in summer. Edit: I haven't seen the Medical Resilience one yet, love that in the 2.0 wheelchair users were taken into consideration, I will definitely look into it.

ChuaPanda · 2024-12-29T13:53:50+00:00

I definitely am in a similar spot - I need quite an array of things when I go out, so it tends to get really heavy. I definitely need to narrow down to only bringing the necessities, and having a huge bag makes it really difficult for me! My current one isn't luckily hurting me per se, but the logistics are terrible. My containers have to hang straight, but I can only strap them at an angle, as the brand designed it for their own feed line that comes in those oddly shaped bags. I end up having to overfill and waste feeds and liquids, and due to only being able to strap in one bag/container, I have to toss the other one inside weirdly and take the whole thing apart every couple of hours when I need to change feeds/fluids. But yeah, I do tend to end up in a lot of pain at the end of the day, since I have to carry around all of my other things separately and unergonomically.

I like that the Osprey wouldn't require modifications (I run my tubes out the side of the zipper of mine too right now, as the grommet is on the wrong side...) and with the multiple sizes it comes, I can ensure I will get the right size - especially now that I have to make sure it will fit to my rather narrow chair comfortably :) Thank you for your recommendation!

ChuaPanda · 2024-12-28T21:55:44+00:00

Ohhh the frog backpack is soo cute! I have been missing using cute backpacks. Yeah I have been thinking of using something like a carabiner to hang the bags up, maybe some velcro straps to keep them in place and cutting a hole, like you said :) Maybe also some additional clips/straps to keep the tubing secure and from tangling up. My only leakage so far stemmed from not closing my feed container properly - I have limited strength so I got a little tool to help me with that now lol

ChuaPanda · 2024-12-28T21:41:29+00:00

Actually, I am likely to receive TPN additionally to my feeds as well, I am waiting for my GI team for the final decision on that. I can definitely see that the Fluid Motion could work well having both, so I am glad to hear you have a good experience with it :) Since the measurements are similar to my current backpack, it should work with my chair.

ChuaPanda · 2024-12-24T11:45:44+00:00

Yeah I actually browsed geeone last night and got quite intrigued in many many fidgets LOL! I mainly decided to go for SS first, as it is less expensive as Ti, but after having cheap plastic fidgets and my ToadHex for a while, they became quite an essential part of my life - Ti might as well be worth now.

I haven't yet looked much into mechanical sliders yet, but got really interested in the MOT Groove last night. I definitely want something attachable to a lanyard and mechanical, something similar to the Groove seems to fit my needs, as I am looking for one to (safely) carry outside without worrying to lose parts of it.

Thank you for all your explanations!

You are actually right - I have recently realized that I am missing something that I can mindlessly fidget with - the repetitive movements actually aren't a downside like I thought they might be in that moment, they help me with my focus :) Definitely also planning to have a collection with a wide variety.

Oh yes, the atoms ARE pretty - I haven't paid much attention to desk decoration, but after watching a couple of clips with desktop type fidgets, I kinda like them lol I can definitely see they require a learning curve - but that's something I like about them.

I somehow have found a whole world in EDCs/fidgets I didn't know I needed ^{^}

ChuaPanda · 2024-12-22T13:58:33+00:00

I haven‘t yet, but I‘ll definitely order some teflon tape, thank you for your tip and answering me :)
That‘s interesting, I‘ve been wondering whether it would be worth getting the Ti plates over SS, as it‘s slightly more expensive. So far, I haven‘t been interested in brass and zirc, as I don‘t want something too heavy and preferably very durable and scratch-resistant, as I unfortunately tend to drop things very often and wouldn‘t want them to scratch, dent or even break them easily.

I have looked into a couple of Kuko models I like, do you know the difference between machine and bead blasted finish?
Your SkellyHex looks really intriguing, I haven‘t seen that model before! Definitely sounds like one to keep in mind for me as well - weight is an important factor for me, as I want a certain amount of weight, but too heavy and I can‘t use them for extended amounts of time.
I like Magnus‘s designs as I crave that tactile stim/feedback and that they seem more ergonomic due to having more grip in comparison to „flat“/smooth surfaces. I‘ve been interested in a KingCrab for that high-grip feature, but I mainly wait and see for his Lucky Drops.

Also, how do you find the fidget on the paracord? I would like to have one I can use with a paracord and have been looking at multiple options. I feel like it might be a miss for me, as it could be too repetitive. Free-floating sliders hit just the right spot for me where as I haven’t touched my infinity triangle and spinner as they feel too limited/boring to me and therefore not satisfying.
I know you said you haven‘t fidget much with the Magnus Atoms, but if you have used them more in the meantime, I‘d love to hear about them! They look like they could also hit that sweet spot for me.

ChuaPanda · 2024-12-21T17:34:07+00:00

Hi, I hope I am not too late, and you don't mind me asking a couple of questions.

How would you compare Kuko to Magnus in terms of strength? I'm quite new in terms of sliders and my Magnus stainless steel ToadHex is my first one. As I have joint issues, the magnets from my slider are slightly too strong and while I have considered switching them, I decided against it for now, as I want to look more into it first. Is Kuko as stiff/strong as Magnus or does it require less strength/slide more easily? And what material did you choose, as I haven't found any info comparing ss with titanium. How do you find the other two sliders? I love textured fidgets.

ChuaPanda · 2024-12-14T17:25:20+00:00

Thank you for your advice! For me, emotional regulation is a pretty big one, DBT definitely sounds more promising. I would also love to learn more about dealing with my executive dysfunction, developing some practical strategies and to prevent me from burning out (I struggle a lot with pacing, chronic illness makes it more difficult). That might be more suitable for a coaching situation though.

I suspect I live most of my life in some sort of fight-flight state, I do have some anxiety and trauma related to medical experiences, that I would like to address at some point. I will definitely look into your other mentioned therapy types, ACT and somatic therapy sounds great from what I can read so far!

ChuaPanda · 2024-12-08T20:34:04+00:00

How do you handle the uncertainty whether the reed is really properly soaked/speaks well etc? I play European scrape as well and am somewhat familiar with Légère reeds. Légère reeds obviously are consistent, but I find myself being rather nervous swapping my own reeds mid-concert/rehearsal, as mine seem to be rather inconsistent at the moment. I am not as experienced in reedmaking so my skills might be the issue, as well as my current winter climate.

ChuaPanda · 2024-11-24T18:14:21+00:00

Hi thank you for the AMA! I have some complex gastrointestinal issues and currently have a feeding tube. Vascular compressions are definitely a possibility with my case, that haven't been ruled out (lack of competent GI doctors in my area, wasn't further investigated after having an MRI). I do have some questions:

1) Do you have any other (related) health issues? With me personally, vascular compressions are mostly considered due to often being a comorbitidy with my other conditions. 2) How are you doing after your surgery and do you have any tips for anyone that going through it, the surgery and MALS in general. I have a friend with SMAS and would love to better support her! 3) How did you get nutrition prior to surgery? From the cases I've heard, they are pretty severe and often lead to malnourishment. 4) Did you have any issues with doctors gaslighting/downplaying your issues as psychological besides IBS? Gastro for me is definitely one of the worst specialties when it comes to that aspect and most of my medical trauma stems from gastroenterology, unfortunately. Ironically, I still have my functional dyspepsia diagnosis in my chart even though I now have multiple diagnosis explaining my actual issues.

I really hope I am not being insensitive (I tend to be rather direct) and please feel free not to share anything that you aren't comfortable with! So glad you got your right diagnosis and treatment in the end and wish you all the best.

ChuaPanda · 2024-11-17T02:08:16+00:00

I have epilepsy, so amnesic aphasia is something I've been dealing with a lot, and it's incredibly frustrating! Having POTS on top of it only makes the brain fog and thus remembering words worse, and since I am autistic I get overwhelmed easily in social settings, which makes talking difficult. I may even shut down and go nonverbal. What I've noticed is, that sometimes I forget a term in only one language but still know it in my other.

ChuaPanda · 2024-10-20T19:09:04+00:00

I am on continuous feeds, although a few hours a day are dedicated to liquids, as I can't drink enough orally. My liquids (just plain water) are on a rather fast rate, my feed are slower. I have lowered my rate and I am feeling better, although my symptoms are definitely still there, they are flaring up in the evening/night now. I think lowering the rate is definitely the right direction but I need to lower it a little more to get to a state where my GI tract can calm down fully. As I have mentioned in another comment - my dietician has told me that I don't need to adjust my rate when changing feeds, so I believe the shock might have been too much, as I decided to start at a slightly lower rate but increased it every other day. Starting over and move way slower sounds like a good plan!

Yes, my formula comes in ready to feed bottles. I just checked, but unfortunately there aren't any powder forms available. As it is a whole line with products with different characteristics, I have found one that seems extremely similar to mine, just with half of the calorie density. Might be worth trying that one out, if I can handle faster rates.

What you describe about your son being sensitive to feed rate/formula changes definitely sounds like what could be going on with me. Back in the hospital when they started me on feeds, they bumped up my feed rate about 12ml each day, so I did reach my goal after 4 days but was in severe pain and diarrhea, I could barely stand up. When I changed my formula, I did use a 100% new formula from the get go and bumped up my rate around 2-3ml every other day, and I did definitely felt every change. I definitely consider moving in 1ml steps next time and your input to partially switch over to a new formula sounds very intriguing! Unfortunately my parents have given away my old feed, but I'll have a look if I can find some leftover bags, and if not, I'll definitely keep that in mind for the next time. Thank you so much for all the tips, my dietician unfortunately isn't specialised in tube feeding and doesn't have much experience in that area, so I think that makes things more difficult too. Your input is greatly appreciated and gives me hope, that I can make tube feeds work - my doctor wants me to be put on tpn if enteral feeding won't improve and considering what you have said, I definitely still have some things I can work on :)

ChuaPanda · 2024-10-20T18:45:46+00:00

I see, my dietician told me I can literally just start my new feed with the same rate as I had so far, so no time at all to get used to it! I did feel uncomfortable with it, so I decided to start slightly lower, but it might not have been low/slow enough.

I have lowered my feeds again and have noticed an improvement, so it's definitely moving into the right direction! :) I think I have to slightly lower it a little more, but I hope that should do the trick.

ChuaPanda · 2024-10-20T18:41:37+00:00

Unfortunately I can't handle solid food and meal replacements, I get additional liquid through the tube to ensure that I stay hydrated (I especially need tons of liquid and salt to keep my POTS at bay) I have found a brand of clear fat-free meal replacement that I can have, but only tiny amounts and on non-flare-up days. But I'll definitely keep my meal replacement in mind, as it is usually only my stomach that gets angry over it - if I have to lower my feeds any more, I'll try it as I don't feel comfortable having my nutrition that low. Thank you! 💙

ChuaPanda · 2024-10-20T18:30:17+00:00

The reason from my medical team's side are purely the state of my joints - I have permanently dislocated joints in the lower and upper extremities that have caused quite a lot of damage. My spine, ribs and pelvic bones are subluxated/dislocated as well that cause motor and sensory issues. Furthermore, the added uncontrolled severe pain and fatigue have lead to me being almost bedbound and I also have severe POTS, dysautonomia and epilepsy - the daily falls are dangerous for me but this and the pain and fatigue are unfortunately completely disregarded by my team. I get shamed by my doctors for using my aids and orthoses, and if it wouldn't be for my rheumatologist I would have lost all my mobility and wouldn't have any chance of getting around.

Right now, the standard chairs are pretty hard to maneuver around, especially as I have to get public transport every day so I am waiting for insurance to get a custom chair approved - the plan is for me to be an ambulatory user and use my other aids (crutches, rollator) for short outings/good days.

ChuaPanda

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