I use IKEA kellax units with the kellax range of additional boxes, doors & drawers to store all my feeds, fluids, meds, syringes, giving sets, tube stuff, syringe caps, meds bottles adapters, steam sterilising bags, spc catheter stuff, Bowel irrigation stuff, dressings, rehydration stuff & pots stuff, Tubie pads, Tubie clips, creams, gauzes, etc xx
I’m only 9 months into my journey I’m now NJ fed but also keep throwing up the tube, should be getting the G-POEM procedure next month, I have gastroparesis and a probable pots diagnosis but waiting for the cardiologist to review the halter monitor results. It made me wish I had kept better notes like you have. I’ve kept every letter and hospital band but no notes. Good luck for the sorting and the move from New Zealand
Urghhh I’m so sorry that keeps happening it’s such an awful feeling when that happens! What’s the G-POEM procedure I don’t think I’ve actually heard of that!? Good luck with your cardiologist hope you get some answers very soon. It’s definitely helpful keeping notes and also taking a notepad into every appointment with you to take notes of what your doctor says. It also helps writing questions down in the note pad to ask the consultant when you next visit to make sure you don’t forget anything. Thank you ❤️❤️
@@bethgallery1140 the G-POEM is basically when they cut the lower sphincter in the stomach that goes into the intestines to help the stomach empty with gravity, not sure that it'll work for me but willing to give it a go. Its still quite a new procedure, I believe its only been preformed for the last 2 years in NZ. Some people are effectively cured of thier Gastroparesis after the surgery so here's hoping
I’ve seen a few pictures of people doing that lately! I’m trying to have a look on Pinterest of the best way to store it but not much is showing for medical storage in a caravan 😂😂😂. Thank you! And yes majority of my meds I have to crush but there’s an odd few I can’t crush so I have to take them orally at times I know I won’t be sick so just before I go to sleep or after I’ve just been sick hoping they will stay in for a bit! Xx
Your bladder problems could actually be caused more directly by your EDS than POTS, it might be worth seeing a urologist to see if you’re retaining at all, as that’s really common with EDS & could be causing the infections!
@@bethgallery1140 there might be some medications you can try, or they might recommend catheterising once a day or something to make sure it’s never sitting in your bladder for too long (although that’ll only be if it’s really bad, so not worth worrying about at this point!). But I do think it’s worth talking about with a doctor and getting referred x
Good luck with the move and finding room for all that lovely. I have a full unit in our bedroom. A small unit on my bed sid unit, things in my wardrobe and I even have take deans wardrobe and then there is the spare room that has even more. Oh and a unit in the central passage haha. I have so much its unreal. I will send u a video on Instagram if I rember. I need a 3 bed property just to have a full on medical room. 🙈🙈🙈🙈🙈. Enema supply's feed supply's and so so may syringes, all my medication and I get 6 month at a time on my blood thinning injection aswell. Its just so much, we had to sort things out and get rid of loads to make room and we still struggle. My pharmacy dreads my scrip as its the biggest they have and they dont have to do my nj supply's and Enema supply's.. xxxx
Oh my goodness that’s a lot of medical stuff isn’t it!! 😅😅 I normally try to keep everything in one area but I always only have a months supply at a time and the very max is 6 weeks so god knows what it would be like if I had 6 months!! Don’t know how you cope! Yes please send me any pics/videos 🥰🥰 need all the inspiration I can get lol xxx
Yes I have the hypermobile type EDS! Only found out after I was diagnosed with everything, so it’s probably an explanation for everything 😫😫 thank you, I hope you are ok too!! ❤️❤️
I use IKEA kellax units with the kellax range of additional boxes, doors & drawers to store all my feeds, fluids, meds, syringes, giving sets, tube stuff, syringe caps, meds bottles adapters, steam sterilising bags, spc catheter stuff, Bowel irrigation stuff, dressings, rehydration stuff & pots stuff, Tubie pads, Tubie clips, creams, gauzes, etc xx
Loved this!!🤍
❤️❤️
Love you always 💓
I love you moreeee 😻😻😻❤️❤️❤️
I’m only 9 months into my journey I’m now NJ fed but also keep throwing up the tube, should be getting the G-POEM procedure next month, I have gastroparesis and a probable pots diagnosis but waiting for the cardiologist to review the halter monitor results. It made me wish I had kept better notes like you have. I’ve kept every letter and hospital band but no notes. Good luck for the sorting and the move from New Zealand
Urghhh I’m so sorry that keeps happening it’s such an awful feeling when that happens! What’s the G-POEM procedure I don’t think I’ve actually heard of that!? Good luck with your cardiologist hope you get some answers very soon. It’s definitely helpful keeping notes and also taking a notepad into every appointment with you to take notes of what your doctor says. It also helps writing questions down in the note pad to ask the consultant when you next visit to make sure you don’t forget anything. Thank you ❤️❤️
@@bethgallery1140 the G-POEM is basically when they cut the lower sphincter in the stomach that goes into the intestines to help the stomach empty with gravity, not sure that it'll work for me but willing to give it a go. Its still quite a new procedure, I believe its only been preformed for the last 2 years in NZ. Some people are effectively cured of thier Gastroparesis after the surgery so here's hoping
That sounds really positive!! Wishing you all the luck in the world! You will have to let me know how you get on! ❤️
Haha our folder is the same lol. I keep mine same kind of order. Xx
It’s fair to say my new appointment side has shrunk since covid 😂😂🤦♀️ xxx
I keep all of my medical supplies in a tote. I love your videos! Do you crush your medications to put them through your tube?
I’ve seen a few pictures of people doing that lately! I’m trying to have a look on Pinterest of the best way to store it but not much is showing for medical storage in a caravan 😂😂😂. Thank you! And yes majority of my meds I have to crush but there’s an odd few I can’t crush so I have to take them orally at times I know I won’t be sick so just before I go to sleep or after I’ve just been sick hoping they will stay in for a bit! Xx
Your bladder problems could actually be caused more directly by your EDS than POTS, it might be worth seeing a urologist to see if you’re retaining at all, as that’s really common with EDS & could be causing the infections!
Oh gosh really?! Is there anything they can do to help if I am retaining? 🥺
@@bethgallery1140 there might be some medications you can try, or they might recommend catheterising once a day or something to make sure it’s never sitting in your bladder for too long (although that’ll only be if it’s really bad, so not worth worrying about at this point!). But I do think it’s worth talking about with a doctor and getting referred x
Good luck with the move and finding room for all that lovely. I have a full unit in our bedroom. A small unit on my bed sid unit, things in my wardrobe and I even have take deans wardrobe and then there is the spare room that has even more. Oh and a unit in the central passage haha. I have so much its unreal. I will send u a video on Instagram if I rember. I need a 3 bed property just to have a full on medical room. 🙈🙈🙈🙈🙈.
Enema supply's feed supply's and so so may syringes, all my medication and I get 6 month at a time on my blood thinning injection aswell. Its just so much, we had to sort things out and get rid of loads to make room and we still struggle.
My pharmacy dreads my scrip as its the biggest they have and they dont have to do my nj supply's and Enema supply's.. xxxx
Oh my goodness that’s a lot of medical stuff isn’t it!! 😅😅 I normally try to keep everything in one area but I always only have a months supply at a time and the very max is 6 weeks so god knows what it would be like if I had 6 months!! Don’t know how you cope! Yes please send me any pics/videos 🥰🥰 need all the inspiration I can get lol xxx
Do you have EDS? I see you’re hypermobile and you have a lot of EDS comorbidities. Hope your health is doing okay at the moment😘
Yes I have the hypermobile type EDS! Only found out after I was diagnosed with everything, so it’s probably an explanation for everything 😫😫 thank you, I hope you are ok too!! ❤️❤️