Curos caps don't replace manual swabing, but SwabCaps do. They also create a seal around the entire thing.They switched my wife from orange SwabCaps to Curos and we weren't happy because of the extra effort required

I mix my daughters Elecare in a protein mixer bottle. Idk if you’d be okay with using that- but, it’s been a total game changer for mixing her formula and it doesn’t clot on the lid. My daughter has a AMT G-Jet GJ tube. She didn’t have any leakage with the first one and only a little with her 2nd and 3rd. She’s only 3 and tends to be murderous on her bulbs. She used a mic-key and didn’t do nearly as well with it. Maybe requesting a different manufacturer would be a good idea. The only “change” would be the connection sets- which use the enfit connectors to your Farrell and Feed bags. I know this is a few years old- but I just found you. I hope this message finds you well. You’re amazing. Keep fighting the good fight! ❤ we have an extra back pack, extra carry all and a cooler for traveling away from home for more than 30 minutes. Bare minimum I have her backpack and a cooler.

My mom is never allowed to complain about my purse ever again

Is it weird that I'm mildly disappointed that no one makes a tiny kitchen sink? So that you can say everything including the kitchen sink :p

@ReineDeLaSeine14

6 жыл бұрын

Shanon Couch I bet there’s a keychain!

Your an inspiration Cheyne and thank you for sharing what's in your 'BAGS' and being on top of all your need's and to explain what some of you item's do and how they work. Your Medical Terminology is pretty darn good! 💞 I am curious how you keep your hair so pretty? I love the layers in your hair. I prefer book's as well🙂 I am curious what you're ethnicity is? You keep on keeping on, and I love your video's of when you are up to it you share with us your special day.... Farmer's market with your Mom and getting a fig tree.... you were able get some sunshine🌞 I have been following you for a while now, and it's nice how your family is there for you. Your Cat is so cute....I wish I was not allergic to them or I would have one. My German Shepherd 'Nieko' is 13 and he knows when I have been triggered etc. Take good care!! Happy Valentine's day to you and family. 💕💛💕

You are so brave! love it

Are you even a chronic illness patient if you don't have a bag full of random meds, paperwork, and misc stuff? I feel like we all have "that" bag, lol. :-)

I just had a J tube placed. I threw up so violently that I made my G tube come out. Was supposed to be a GJ and I’m so upset that he did just the J tube. The pain is so severe. So between that and I’m on my 4th week of IVIG. Between the two, I just can take it anymore. I’m on Kate farms feeds and they r liquid. I do add water though I the bag, as it helps it go thru better. I just can’t do this and wanted to chat with someone who gets it.

Lol!! This is me with my medical duffel bags and backpack

hey Chey love your videos but by the author A dance with Dragons Fire and Blood book is out now i got it the day after News Years and for my bday im getting the series of the books

I have like 13 chronic illnesses: 1 Epilepsy 2 Asthma 3 Diabetes 4 Dyslexia 5 POTS 6 TCS or Treacher Collins syndrome 7 Ehlers Danlos Syndrome 8 Monorisment Disorder 9 Immundbodydysfunction (I probably spelled it wrong) 10 Autism 11 Narcolepsy 12 Hypoglycemia 13 Sensory processing Disorder I am 15 year old and I have a port, I feeding tube, a wheelchair, and a service dog. Plus a lot more medical supplies!

@morebeansplease102

6 жыл бұрын

MinecraftGaming hey, it sounds really weird but do you have Instagram?

@theanimalkeaper

6 жыл бұрын

I have dyslexia too but I didn’t know it was a chronic illness? I suppose it just depends on the person

@lily-maesummerton8103

4 жыл бұрын

Hey I have an issue with eating my whole life I’ve always had a really small appetite and when ever I do eat it is extremely painful and the doctors are passing it as acid reflux or IBS but my mom has ibs and it’s worse then hers and my dad has acid reflux and it’s worse and when I mentioned gastroparesis some of the doctors refused and some didn’t so I’m having a scab but then they cancelled it so now I’m stuck but I’m always feeling sick or being sick and I’m in excruciating pain after eating been a slice of toast or a cracker

I have the same bag but blue

rest in peace chey

How do you do with the "new book" smell? I just bought school books for my literature class, which were a bunch of paperback classics. Some were super stinky and some were OK. I have MCS and the smell bothered me quite a bit.

@HospitalPrincess

6 жыл бұрын

I am the same! I have noticed that there are certain types of paper that cause reactions and other types that are fine.

I bring everything but my kitchen sink😂😂😂😂, wig😂😂🤣🤣🤣

Love your videos! I am a strong hardcore activist for Hyperemesis Gravidarum , CVS and Gastroparesis and FM ! My mast cell started when I was pregnant and did not know for 7 years what this was ! Do you get brains fog and forget what your saying ? Is your long term short term memory bad ? I found you when I was search for someone on Benadryl and found your website ! How long have you suffered ? You look young so wasn’t sure if you had this your whole life or trigger at a later time ? Do you have issues with constipation from your CDI ? Love a video of you in a reaction it’s always nice to have that understanding keep doing what your doing doll Sister Starr

@marshmelody3679

6 жыл бұрын

I'm becoming addicted to your videos because you are very inspiring, I was getting worried because you hadn't updated in a bit! Glad to see your pretty face! Have you ever been told you look like the musician Lindsey Stirling???

@marshmelody3679

6 жыл бұрын

My biggest medical question is how exactly do you keep the continuous benadryl running through your body without stopping? You may have already answered this in another video. Also, as an avid reader, English major, and "invisible disease" fighter (whereas I am often laid up), I would enjoy any other book reccomendations. Here's one for you; Check out the "Unwound" series, I actually just found out it is a "young adult" series (I'm 30 haha) but a unique story told through half a dozen books. Again, glad to see that you are, God willing, in good spirits, feeling better and out of the hospital. Take care, my lady.

@HospitalPrincess

6 жыл бұрын

Thank you! I am sorry you suffer from MCAS also. I do get brain fog, especially lately. I would say my memory is still pretty good. I am 21 now. I have had symptoms since birth, but it did not become debilitating until I was 11-12. However, I did not have my first full blown mast cell reaction until I was 17. The CDI does not cause constipation. I have colitis. It does reduce the number of times I go in a day though, thankfully. I am more prone to diarrhea due to colitis, but I have had bouts of constipation where I will not have a BM for ~3 weeks.

@ReineDeLaSeine14

6 жыл бұрын

Starseed Melody Unwind is FABULOUS. My mom had HG with me but there was no awareness of it in 1987.

@StarrAndrewsStrongHGactivist

6 жыл бұрын

ReineDeLaSeine14 love to hear your story

Hey I have you tried tube pads to use around your stoma for a more secure fit? I also watch chronically jaquie's channel and she uses those. One other question are you able to do any oral intake?

@HospitalPrincess

6 жыл бұрын

Yes, I do use tubie pads too. Gauze is just more convenient if I am out because they are individually wrapped. And as far as oral intake - a few sips of water is about it.

Have you ever talked to your doctors about getting a cgm? It might help you track your bg levels.

@HospitalPrincess

6 жыл бұрын

The endocrinologist allowed a one week Dexcom trial to see what my bg levels were doing. After trying to get it for long term use, the insurance would not pay for the weekly sensors it unless I was a diabetic.

@oliverlikescats4736

6 жыл бұрын

Have you heard of the Freestyle Libre? A lot of diabetics who can't get a cgm covered use the Libre because it's considerably cheaper. It's a sensor that you wear, but it doesn't send readings constantly. Rather, you scan the sensor with the corresponding device. You can scan it several times a day to get a graph like a cgm.

@HospitalPrincess

6 жыл бұрын

I haven't! I will look into that. Thank you.

@ReineDeLaSeine14

6 жыл бұрын

Yeah the Libre is new in the US and it’s pretty neat. There is a type of diabetes related to pancreatitis...didn’t you have an abnormal GTT forever ago?

Would you post an updated version of this?

@HospitalPrincess

3 жыл бұрын

Sure!

What is your name?

How old are you?

@HospitalPrincess

6 жыл бұрын

21

Where do you get your masks from? I don't like the other kind. I don't think they do the job! 😷 yucky❗