My favorite things are #spoonie editions of videos. they feel so much closer to the truth of my life lol. When I empty my bag I get the strangest stares because of having a hurl bag lol. Thank you for the video! It is nice to see you doing ok enough to film.
+Nonalie Guesst Lol yeah... so many of those videos are like these super pretty expensive lipsticks and stuff and im like... um I think I maybe have aChapstick somewhere.. 😂.
Just thought I'd mention (I'm a service dog handler) I have found dog poop bags to be an alternative to the hospital vomit bags now they don't have the plastic price to hold it open but they have a bigger opening so I haven't had a problem with them
I am recently diagnosed with Ehlers-danlos hypermobility syndrome. It has been a super hard journey, for a while I thought I was dying! I couldn't eat for a few months and the doctors thought it was psychosomatic. Thank you for sharing with us. Something about these videos you share help normalize the struggles. I don't have a PICC or a feeding tube, but I do have tons of braces. I just wanted to tell you how much it means to see someone else whose life is as unpredictable and UNSTABLE as mine! You're inspiring. I feel better when I watch your videos, especially on the days I'm stuck in bed.
That has to be heavy. You sure have it together for the cards you've been dealt. I'm inspired by how you handle it. I find myself in odd states of depression in the wee early hours of the morning. keep up the good fight.
It is super heavy! The best part of being in a wheelchair was being able to hook it on the back. Now that I can walk again I unfortunately have to lug it around with me lol. But its worth it! Hang in there Scott, you are in my thoughts and prayers
Scott LEGO Fowler praying for you! I'm up in the wee hours often too n watch a ton of TH-cam(I've watched 90% of Netflix lol) but other than this awesome channel I love watching The Frey Life another awesome chick who kicks butt. I am obessed with jvloggers lately I like Rachel and Jun they're awesome and will make you laugh a lot! I like Sharla in Japan and Taylor R. I also watch Matthias and all of his channels along with Wengie and all of her channels. Many of these make me laugh. oh can't miss Good Mythical Morning!!! they are hilarious! hope one of these fall within your interest and can bring you some laughter in the middle of the night! I know those are the hardest hours usually, at least mentally. you're not alone n you're being prayed for!
I have a foldable little light weight thing with two wheels that I think is meant for rolling a bag of groceries. I have it in the back of my trunk and if my bag is too heavy then I use that. It folds up too. I was thinking this could be helpful if your bag is too heavy Christina!
Hahaha that is very typical of me. I used to have that bag in another bag but I consolidated. Its super easy though when I need something and can tell someone exactly where to find something.
Christina Doherty no way! Haha that's brilliant, it's a good way to know where everything is lol. I used to have a small bag within my usual backpack containing my medicine and joint supports, but luckily that only required a small bag!
Girl, I'm nosey too - I love watching videos like this lol. I'm really glad you made one! Not a lot of Spoonie What's In My Bag videos on TH-cam. And that bag is SO CUTE!
omg you're soo pretty, i started watching your videos like a couple of weeks ago. you're awesome! so many things you need to do before going out and so many things to carry! and i'm over here complaining about little stuff
hi! I just came across your channel today...It's nice to meet you! Love your smile even tho your going through a rough patch. I'm right there with you on a bag inside a bag inside yet another bag! My 3 children and myself have EDS and my teenage son and I both have pots, another kiddo with autism and adhd, so I have a lot in my bags! I hope you begin to feel well again soon! Gentle hugs!
+jessica king Lol yup the bags are never ending! I can only just imagine that with 3 high need kids you are totally ripped from all of the bag carrying. Wishing you all the best! 💕
I really love how positive you are staying through this rough patch. I really hope you get better soon and everything will work out. On another note, i love your hair and outfit
omg i also fall down the rabbit hole of those vlogs too, esp when i'm stuck in bed. i loved this spoonie edition though! i've been looking for a backpack to switch to from my purse bc i've been overloading it with spoonie stuff and it's not doing good things to my eds shoulders. ALSO your hair and outfit are so cute in this!! xx
I have been loving watching your videos. I recently was diagnosed with EDS type 1 so I'm no where near the level or have the extra comorbities you have. Im just weirdly over flexible which helped my gymnastics as a child and teenager and was always more prone to dislocating joints than other people, I also have this weird party trick where I can stretch and move my skin on my face to weird angles. but yeah my point sorry I just searched eds on TH-cam after my diagnosis and your channel popped up, you are very informative on everything from living with a chronic type of eds and pic lines through braces and mickey buttons and I love how you're always so happy and peaceful its really nice to watch, even with all the curveballs life hits you with you just seem to be super chipper. p.s love the hair style ❤
Wow, that is a lot to carry. Maybe you should use a rolling book bag to keep from hurting your joints. You are very organized & prepared & that’s good. I think I need to get one of those masks. Thanks for the links!
I enjoyed the video. Girl you are so organized I love it. I also loved the color of your head phones and loved the bicycle bag you had! Love your style. How many times can I say love...lol. I don't know what's it's like to to have EDS. But I can't help but watch u because your inspiring, strong, and i love your style and videos. And educational. Good vibes your way. Mad respect for others with eds & the struggles y'all deal with daily.
On your recommendation from this video I ordered the quease ease and it's amazing. As you say at may be a placebo effect but I don't really care as long as it works 😊
I have a foldable little light weight thing with two wheels that I think is meant for rolling a bag of groceries. I have it in the back of my trunk and if my bag is too heavy then I use that. It folds up too. I was thinking this could be helpful if your bag is too heavy Christina!
Packing's a great topic! During the last 2 weeks I did a trip to DC followed by an unexpected few day stay at a friend's when my house lost power in a wind storm. For travel, I use plastic totes for braces, meds and supplements for my functional GI disorders and MCAS and travel bags + coolers for foods I can eat and low dose naltrexone. Thanks for another great video!
+Angela Oddone Lol so many bags! Do you also find the bags seem to multiply on the way home? Whenever we go somewhere I always have everything neatly packed and organized and by the time we come home things are like shoved in garbage bags 😂
Best what in my bag I've ever seen ❤ I'd love to see any other videos you wanted to make about what you need to prepare to go out it's really eye opening to see how many situations you have to try and plan for.
+Trekkifulshay Its really awesome! I bought it used on Ebay in really good condition. I have another one that I got years and years ago for my toiletries while traveling. They have held up really well.
I forgot to ask you which Benadryl you find best to crush that doesn't clog your feeding tube. Now that my daughter is older the liquid she now needs 20 ml for a single dose which can be a lot with volume tolerance.
Can I ask what is in your prescribed pain cream? I’m thinking about asking my doctor for that type of compound medication and I’m just curious what’s in it. 💜
Cool video, I usually will be out somewhere and then realize I should've brought stuff with me but only after I'm in need of it. You're smart to think ahead.
You brought up a good topic. Something I have been thinking about lately. Everytime I go into stores, especially craft stores... there are women customers who wear wayyyyy too much perfume. I try to stay away from them if they are in line. If I cover my nose they think I am weird. No matter what I do they think I am weird. But one sniff of their perfume and I end up sick and with a migraine and in pain. So that mask you have.... I like that idea but my question is... how do you use it? Do you just wear it the whole time you are out? Do you put it on randomly? Do people ask why you wear it? In the winter I can put my scarf up on my face and avoid peoples strong odors but in the summer I need another plan. I need a plan to be able to be out and about and not react. I also am afraid to get sick and frankly some people just dont' cover their mouth. If I get sick.... i will be in more pain and suffering than a normal bodied person because of my mast cells and eds. Right now I have these gloves that I wear all the way through spring and don't really use in the summer. But the gloves help protect me from touching germs and then touching my face. I really do need a mask thing though. I am so new at this... I dunno how to do some of these things. Do you think you would be willing to do a mask video? Or a video of what you do when you go out to keep safe?
I really liked this video and I would watch other packing videos if you did them. I kinda like those, too. Maybe it's really just being nosy :D I'm hoping you'll soon find a treatment for the issues with your neck soon but it's good to see that at least you seem to be a little better and are not completely bed-bound anymore. Wishing you all the best all the way from Germany!
Thanks, this was really cool and interesting to watch. Your bag looks heavy though, it is difficult to carry around along with your feeding bag? It would be great if you could make a packing video for when you go to the hospital for surgery/overnight stay :)
+Rose Johnson Yes! Its super heavy! Luckily I don't do a ton of walking around with it. But Thats the only thing I miss about my wheelchair, having a place to hang it. The multiple bags in the bag kind help though. If theres something I would need I just take out that bag.
+Carol Ann Vincent Oh boy, isn't packing with a chronic illness such a joy? Hahaha I swear every time I go somewhere my actual clothes and stuff are like only 1% of the stuff we have to pack. Best of luck on your trip 💕
love it, my husband just realized that my bag is nothing bc I carry a lot. for trips to doctors I have to carry 2 bags plus my own food bc I can't eat much of what a hospital would have. I hope you feel better soon, I've been thinking of you.
+Dawn Keith Avon Thank goodness my mom volunteers to lug my medical records when we go to doctors. She recently got a little rolling bag and its been awesome. Im sure you have a giant med binder as well lol
I hope this isn’t too personal. I have EDS and just started taking Elquis for PEs. I have high Von Willebrand factor. I was wondering if your blood thinner is related to EDS. I haven’t heard of many other zebras using blood thinners. Love your video ❤
So jealous and impressed with your organization!! laughed about the nosy part, because that is probably why I like seeing them too lol. Ps, if you don't want to carry around the whole box for your spare feeding tube ( which I personally don't even though I should because my tube has fallen out but I am just too lazy to carry it around with me) a lot of people just carry a Foley catheter of the same fr size of the tube that they can place to hold the stoma open instead of the whole tube. A lot smaller :)
I love these types of videos, too! Mostly because I'm super nosy... Your bag makes me feel WAY BETTER about my tendency to overpack. I feel less like a packmule now. ;)
i love what's in my bag videos too and I have a wired fascination for packing videos. If you make more of this kind of videos I will watch and love them too :D
I have a weird obsession with "what's in my bag?" videos, so this is right up my alley! Now, I've learned I want a phone tripod adapter! P.S. Your outfit is super cute :)
Do you have a video about the essential oils you use? You've mentioned it in quite a few videos about ones for pain and nausea and wondered if you had a video about them x
+Jenni Pettican I don't have a video dedicated to it, mostly since Im still playing around and discovering them. The ones I use in my bath and bath bombs are just these big single oil bottles I bought on amazon. The blend I use on my body for pain and in the diffuser was actually sent to me by a viewer its called "rapid relief synergy blend" by plant therapy and for nausea I like peppermint oil or this little mini pocket diffuser type thing called "Quease Ease" that you can get on amazon.
I was a R.N. (Registered nurse) and what I am thinking is: I hope you are sure about the date of "no use good" of your Epi Pen?? (Sorry, I'm french speaking from Montreal, Québec and I don't have the good term or limited date to use your Epi Pen!!) Take care!! Love you!
And I thought my handbag was full! I can't imagine having to remember that much stuff! I sometimes get to my car before realising I haven't picked up my keys! 😂 x
Absolutely loved this video! I don't have a feeding tube but I do require lots of medications so my jumbo sized purse is filled with a whole bunch of pill bottles. I jingle with every step 😂
I also very much enjoy whats in my bag videos, i've fallen down that rabbit hole way too many times! Have you ever needed to use to your epipen? I also carry an epipen, though thankfully ive never needed use it. I also noticed that you had both the traditional epipen and the epipen jr in your bag, just curious if there is a reason.
+Clare Burkhardt I have never used it and yikes Im afraid to! Lol Theres not really a health reason that I have both kinda. Its just because one pack was through a refill from my old Pedi and the other was from my allergist so I ended up with both. Im pretty small so Im mot super worried about getting a pedi dose, but I would probably reach for the adult dose if I have a choice
+Little Anxious Turtle Theres no specific reason why I would need too different ones. One set was filled through a refill order left over from my pediatrician and the other is from my allergist. So Its just what I ended up with. Im pretty small though so im not too bothered by the thought of a pedi dose. But if possible I would reach for the adult 💜
I love what's in my bag videos too!! love that you did a spoonie edition! :) I have similar headphones too! btw your nails are adorable!! are they jamberry? they have a design just like those! :)
+Raven Moore Thank you! Yes they are Jamberry, I bought up a whole bunch of them a couple years back when a friend was having a fund raiser and am still trying to use them up 😂 I really like them though since theres no smell
Christina Doherty lol yeah they last forever I love that! and esp the no smell that was huge for me bc my hubby has a lot of the same conditions you have and so he can't tolerate many scents esp nail polish so I was so excited to find these! :) glad you did too!! :)
Wow that bag of yours is deceptively large. I used to lug around a huge bag too, untill I realised it was causing me much more pain, I have a phone and wallet combo with a shoulder strap that I wear across my body. It means I can put it down by my side or under a jacket or while I'm in my wheelchair
because some times I just feel vunerable in a wheelchair. It just occured to me that now I don't have to carry a bag, so I might assemble another bag to leave on the back of my chair, when I go out for medical appts and such. Like you I travel for most of my appts so it would be one less thing I
have to pack at the last minute. Lets face it, appts can be painful and exhausting enough as it is. Another good topic for a vlog might be how people organise their medical documentation, records, meds lists, imaging, pathology results, specialists reports, maybe what info do people have on
+Katie Robinson It doesn't have a removable filter, so you kinda just have to rinse it until you feel like you need a new one. By then though I find its a bit stretched out/makeup stained anyway
+Kayla Green The silver ring splints are from "The Silver Ring Splint Company." They have a lovely website but need to be sized by a professional. My other rings are from etsy and bracelets are made by me, but im sure you were just asking about the splints lol
Hi I'm doing a biomed project on ESD. I was wondering if you (or someone else with this condition) can tell me the impaction that EDS has had on your life and on your family members
+Nani O Absolutely! I would love to talk on that topic. It would be easier if you could direct message me or better yet message me on my facebook. Same name, but the link is under all my videos ❤️
Not sure if you've answered this in a previous video or not (brainfog amiright?) but I was just curious if you use any mobility aids? And if so, what? (I'm a cane-user myself)
+Alec I don't currently use anything, but as I'm sure you know it can change from day to day. I have spent quite a bit of the last few years using a wheelchair either part time or full time and I had a brief affair with a walker a few years back as well. 💕
Christina Doherty Affair with a walker😂😂, I love that!! That made my day. I have CRPS, CFS, chronic migraine, anxiety, and probably more. I should start saying that instead of my typical talk😂
I LOVE your pants! I might just have to go out and buy them myself lol. But random question, are they are stretchy material or is it only the elastic thats stretchy? (if that makes sense) Btw love your videos and its nice to see you made it out of bed long enough to make a video! xx
+Amber Rose The waistband and ankles have elastic but the rest is like a scarf material if that makes sense. Super light and airy! I like that it has a wide waistband so it doesn't dig in
Christina Doherty Christina Doherty Ooh it sounds nice, thank you! But yeah i agree a waistband would help, and I'm quite a textures person so for it to be nice and lightweight is always a bonus
My wife took her button replacement items out of the bulky packaging and put them in a little pencil case with a zipper. That way if fit nicely in her purse. Would that work for you?
Interesting! The only think that makes me nervous about that though is that it isn't sterile anymore. Plus if I had to have it done in an ER or something for whatever reason I would be worried that they wouldn't use it out of the package
Christina Doherty could you leave it in the inside wrapper but take it out the cardboard box? You could put the sealed tray in a fabric bag like the others you have for a little protection but less bulky 🙂
I wonder how many people watching this don't have EDS, MCAS, or dysautonomia (I have all three), and had no idea what the hell you were talking about 😂😂
You didn't develop type 1 diabetes as well, Christina, did you? Or is monitoring blood sugar more about being sure you have enough carbs and nutrition?
+Andrea Hultman As Sarah mentioned I have been having issues with my blood sugar spiking and dropping these last few months, but it seems to be more related to my feed schedules. I am starting to get it stabilized by changing my schedule around so it seems like it isn't really true diabetes 💜
Woa! I have a clotting Disorder (Lupus Anticoagulant) and I've had to take Lovenox injections (ouch!). But did you say you have Heparin too? Do you use both the Lovenox and Heparin daily? And do you have to check PT/INR's to see how thick your blood is? Are you prone to clots? Sorry if this is too personal, it's just interesting to me since I live with the fear of clots all of the time, and it seemed like your blood must be very thin using both thinners, but could it be because you cannot swallow a blood thinner tablet like Warfarin (Coumadin)? My condition is known as "sticky blood" and so I thought my blood thinners were rather strong until I saw you with both. I love your video though! I love watching the What's in my Bag videos a lot!
+Beth Wade Hey! My doctor actually thinks I have sticky blood as well. We are still running panels. But I am on the lovenox, heparin (to keep the PICC free of clots) , and asprin. I had a stent placed in my jugular vein a few months ago and after that I was on high dose aspirin and Plavix and lemme tell ya, now that was thin blood 😂 We aren't quite sure if I have a clotting disorder, I have had a few TIAs, or if Its just because I have narrowing in the vessels of my brain, but the blood thinners help my symptoms a lot.
Very interesting. I am in a group called Antiphospolipid Syndrome Lupus Anticoagulant on Facebook and someone there just asked for prayers for their daughter who had EDS and Lupus Anticoagulant. I was wondering if there is was link....both appear to be autoimmune connected. Stay safe. And yes, all of those thinners! It's amazing you aren't Anemic! Good luck on your blood tests. I remember when they were testing me, they took 14 vials of blood at once! I had to sit there and have some snacks to keep from passing out because they took so much. Hopefully if they are just trying to check for the sticky blood, you won't have to go through all of that! Hugs. Let us know how it goes!!!
Hi there happy Fourth of July I know how you feel I'm so sick these days tremendous pain still need to get on get funding for healthcare life can be hard very very hard I'm very thankful because it could always be worse now let's see what's in that bag of yours! Thanks for sharing😇😇😇😇😇😝😇😇😇😝😝😝😝😊😊😊😊😊😊😊😇
hi! I just came across your channel today...It's nice to meet you! Love your smile even tho your going through a rough patch. I'm right there with you on a bag inside a bag inside yet another bag! My 3 children and myself have EDS and my teenage son and I both have pots, another kiddo with autism and adhd, so I have a lot in my bags! I hope you begin to feel well again soon! Gentle hugs!
A spoonie version of Mary Poppins' bag!☂️
this was so much more interesting than the usual "what's in my bag?" videos!
+NotDeadJustYet Thank you! Lol its kind of amazing what can fit in one bag
My favorite things are #spoonie editions of videos. they feel so much closer to the truth of my life lol. When I empty my bag I get the strangest stares because of having a hurl bag lol. Thank you for the video! It is nice to see you doing ok enough to film.
We also have the same blood glucose kit that's so cool.
+Nonalie Guesst Lol yeah... so many of those videos are like these super pretty expensive lipsticks and stuff and im like... um I think I maybe have aChapstick somewhere.. 😂.
Haha exactly. It's like "here's my coach wallet" and I'm like but where's the one touch meter lol.
Just thought I'd mention (I'm a service dog handler) I have found dog poop bags to be an alternative to the hospital vomit bags now they don't have the plastic price to hold it open but they have a bigger opening so I haven't had a problem with them
I am recently diagnosed with Ehlers-danlos hypermobility syndrome. It has been a super hard journey, for a while I thought I was dying! I couldn't eat for a few months and the doctors thought it was psychosomatic. Thank you for sharing with us. Something about these videos you share help normalize the struggles. I don't have a PICC or a feeding tube, but I do have tons of braces. I just wanted to tell you how much it means to see someone else whose life is as unpredictable and UNSTABLE as mine! You're inspiring. I feel better when I watch your videos, especially on the days I'm stuck in bed.
That has to be heavy. You sure have it together for the cards you've been dealt. I'm inspired by how you handle it. I find myself in odd states of depression in the wee early hours of the morning. keep up the good fight.
It is super heavy! The best part of being in a wheelchair was being able to hook it on the back. Now that I can walk again I unfortunately have to lug it around with me lol. But its worth it! Hang in there Scott, you are in my thoughts and prayers
Scott LEGO Fowler praying for you! I'm up in the wee hours often too n watch a ton of TH-cam(I've watched 90% of Netflix lol) but other than this awesome channel I love watching The Frey Life another awesome chick who kicks butt. I am obessed with jvloggers lately I like Rachel and Jun they're awesome and will make you laugh a lot! I like Sharla in Japan and Taylor R. I also watch Matthias and all of his channels along with Wengie and all of her channels. Many of these make me laugh. oh can't miss Good Mythical Morning!!! they are hilarious! hope one of these fall within your interest and can bring you some laughter in the middle of the night! I know those are the hardest hours usually, at least mentally. you're not alone n you're being prayed for!
I have a foldable little light weight thing with two wheels that I think is meant for rolling a bag of groceries. I have it in the back of my trunk and if my bag is too heavy then I use that. It folds up too. I was thinking this could be helpful if your bag is too heavy Christina!
I love that you had a bag, inside of a bag, inside of a bag! Haha, very well organised :) had a lot of fun watching this!
Hahaha that is very typical of me. I used to have that bag in another bag but I consolidated. Its super easy though when I need something and can tell someone exactly where to find something.
Christina Doherty no way! Haha that's brilliant, it's a good way to know where everything is lol. I used to have a small bag within my usual backpack containing my medicine and joint supports, but luckily that only required a small bag!
I do the same thing #spoonie 😂
please do a video for packing overnight in the hospital / surgery
+Cathal Buckley 👍
Benadryl gel is my best bud. Itchy people understand.
Epipen buddies for life
Girl, I'm nosey too - I love watching videos like this lol. I'm really glad you made one! Not a lot of Spoonie What's In My Bag videos on TH-cam. And that bag is SO CUTE!
+Sick, Tired, and Alone 😘 Thank you!
Loved this video, your bags are all so adorable!! You might not travel light, but you definitely travel with style 🙃
+Rachel Leeds Aw thank you! I try to keep it fun 😊
Everything you own is so beautiful! I love all your clothes and bag and bed clothes and just everything!
+Let's Talk Living Awww thank you so much! 😊
omg you're soo pretty, i started watching your videos like a couple of weeks ago. you're awesome! so many things you need to do before going out and so many things to carry! and i'm over here complaining about little stuff
+Nicole Rodriguez Hahaha well Im definitely prepared. And thank you, you are so sweet 💕
hi! I just came across your channel today...It's nice to meet you! Love your smile even tho your going through a rough patch. I'm right there with you on a bag inside a bag inside yet another bag! My 3 children and myself have EDS and my teenage son and I both have pots, another kiddo with autism and adhd, so I have a lot in my bags! I hope you begin to feel well again soon! Gentle hugs!
+jessica king Lol yup the bags are never ending! I can only just imagine that with 3 high need kids you are totally ripped from all of the bag carrying. Wishing you all the best! 💕
I really love how positive you are staying through this rough patch. I really hope you get better soon and everything will work out. On another note, i love your hair and outfit
+Hannah M Awww thanks so much! 😘
I have a Hickman central line and I was never given a card? Should I ask someone about it?
omg i also fall down the rabbit hole of those vlogs too, esp when i'm stuck in bed. i loved this spoonie edition though! i've been looking for a backpack to switch to from my purse bc i've been overloading it with spoonie stuff and it's not doing good things to my eds shoulders. ALSO your hair and outfit are so cute in this!! xx
+agirlisariot Aww thanks! I love this bag, but I do with it had wider straps.
I have been loving watching your videos. I recently was diagnosed with EDS type 1 so I'm no where near the level or have the extra comorbities you have. Im just weirdly over flexible which helped my gymnastics as a child and teenager and was always more prone to dislocating joints than other people, I also have this weird party trick where I can stretch and move my skin on my face to weird angles. but yeah my point sorry I just searched eds on TH-cam after my diagnosis and your channel popped up, you are very informative on everything from living with a chronic type of eds and pic lines through braces and mickey buttons and I love how you're always so happy and peaceful its really nice to watch, even with all the curveballs life hits you with you just seem to be super chipper. p.s love the hair style ❤
I'm really impressed that you fit aaaaaall of that in that bag! I'm with you, I'd rather be over prepared than under prepared.
Also, this kind of reminded me of those Russian nesting dolls. The further you got into the further I was like... but... where... how.... hahaha
+mcg267 hahaha Its truly an artform
Yes to more packing videos! I loved this one. I'm also glad you seem to be doing a little better. Hugs!
+Anne-Lies De Reu Hugs back! 💕
Wow, that is a lot to carry. Maybe you should use a rolling book bag to keep from hurting your joints. You are very organized & prepared & that’s good. I think I need to get one of those masks. Thanks for the links!
I have a port... should I have gotten a card with a number?? Do I need to ask my surgeon about this?
I enjoyed the video. Girl you are so organized I love it. I also loved the color of your head phones and loved the bicycle bag you had! Love your style. How many times can I say love...lol. I don't know what's it's like to to have EDS. But I can't help but watch u because your inspiring, strong, and i love your style and videos. And educational. Good vibes your way. Mad respect for others with eds & the struggles y'all deal with daily.
I love these videos! I'd love to see how you organize your supplies and how you pack for hospital/vacation trips 💖
+Mandie Zangora 👍❤️
I have the same blue Ipsy constellation bag. So cute!!
On your recommendation from this video I ordered the quease ease and it's amazing. As you say at may be a placebo effect but I don't really care as long as it works 😊
I love that you did this. Totally taking notes tailored to my own comorbidities!
Haha The bottomless pit bag is a must for any chronic illness warrior!
Christina Doherty oh, I carry a full sized backpack around. Some of my coworkers find it hilarious. But my med bag alone takes so much space! ❤️
I have a foldable little light weight thing with two wheels that I think is meant for rolling a bag of groceries. I have it in the back of my trunk and if my bag is too heavy then I use that. It folds up too. I was thinking this could be helpful if your bag is too heavy Christina!
Packing's a great topic! During the last 2 weeks I did a trip to DC followed by an unexpected few day stay at a friend's when my house lost power in a wind storm. For travel, I use plastic totes for braces, meds and supplements for my functional GI disorders and MCAS and travel bags + coolers for foods I can eat and low dose naltrexone. Thanks for another great video!
+Angela Oddone Lol so many bags! Do you also find the bags seem to multiply on the way home? Whenever we go somewhere I always have everything neatly packed and organized and by the time we come home things are like shoved in garbage bags 😂
Definitely bags tend to multiply!
videos like this are so cute and fun! you should totally do more like this!
+Dana Max 💜
Best what in my bag I've ever seen ❤ I'd love to see any other videos you wanted to make about what you need to prepare to go out it's really eye opening to see how many situations you have to try and plan for.
+Katie McCue Lol I am definitely always prepared!
I like that LL Bean bag. Right now I'm using a Coleman active walking pack for a medical bag within the backpack but I might have to size up soon.
+Trekkifulshay Its really awesome! I bought it used on Ebay in really good condition. I have another one that I got years and years ago for my toiletries while traveling. They have held up really well.
I forgot to ask you which Benadryl you find best to crush that doesn't clog your feeding tube. Now that my daughter is older the liquid she now needs 20 ml for a single dose which can be a lot with volume tolerance.
I have that nausea pen!!! Love it 😍 It’s not a placebo, it seems to numb the nerves and calm your stomach. Aromatherapy is my fave.
+Anxious With an SD Interesting! I wonder if they could just permanently numb those 😂 I would definitely volunteer
Can I ask what is in your prescribed pain cream? I’m thinking about asking my doctor for that type of compound medication and I’m just curious what’s in it. 💜
Love this video. The tubie pads are so cool
I have EDS and many other stuff, this video inspired to set up my own spoonie bag. Thank you :)
Cool video, I usually will be out somewhere and then realize I should've brought stuff with me but only after I'm in need of it. You're smart to think ahead.
+Josh Hittie Lol been there! Now Im too prepared!
feels like me, mom calls it bagception
+jeallen25 Hahaha yes! It makes it super easy to switch between bags though. And easy to instruct people where to find stuff 😊
You totally inspired me to make a video! Mine is a small kit in comparison....BUT it was super cool to see what's in your bag :).
+The NourishedLife_ Awesome! I will definitely check it out! 😘
You brought up a good topic. Something I have been thinking about lately. Everytime I go into stores, especially craft stores... there are women customers who wear wayyyyy too much perfume. I try to stay away from them if they are in line. If I cover my nose they think I am weird. No matter what I do they think I am weird. But one sniff of their perfume and I end up sick and with a migraine and in pain. So that mask you have.... I like that idea but my question is... how do you use it? Do you just wear it the whole time you are out? Do you put it on randomly? Do people ask why you wear it? In the winter I can put my scarf up on my face and avoid peoples strong odors but in the summer I need another plan. I need a plan to be able to be out and about and not react. I also am afraid to get sick and frankly some people just dont' cover their mouth. If I get sick.... i will be in more pain and suffering than a normal bodied person because of my mast cells and eds. Right now I have these gloves that I wear all the way through spring and don't really use in the summer. But the gloves help protect me from touching germs and then touching my face. I really do need a mask thing though. I am so new at this... I dunno how to do some of these things. Do you think you would be willing to do a mask video? Or a video of what you do when you go out to keep safe?
How do you know what size ring splints to order? Or did you buy them from your therapist? TIA.
It was like hermoine in HP.. it held everything! Lol
+Rehptawr Hahahha we call it my Mary Poppins bag!
I love these kinds of videos! Feel better soon💜.
+IAmFrankenstein Forever 😘
I really liked this video and I would watch other packing videos if you did them. I kinda like those, too. Maybe it's really just being nosy :D
I'm hoping you'll soon find a treatment for the issues with your neck soon but it's good to see that at least you seem to be a little better and are not completely bed-bound anymore. Wishing you all the best all the way from Germany!
+DeDe6548 Thank you! Yes, its really nice to be able to get up a bit. 💕
Thanks, this was really cool and interesting to watch. Your bag looks heavy though, it is difficult to carry around along with your feeding bag?
It would be great if you could make a packing video for when you go to the hospital for surgery/overnight stay :)
+Rose Johnson Yes! Its super heavy! Luckily I don't do a ton of walking around with it. But Thats the only thing I miss about my wheelchair, having a place to hang it. The multiple bags in the bag kind help though. If theres something I would need I just take out that bag.
I'm packing for a 3 day trip and I thought I had a lot to take meds/appliances wise but not as much as you have!
+Carol Ann Vincent Oh boy, isn't packing with a chronic illness such a joy? Hahaha I swear every time I go somewhere my actual clothes and stuff are like only 1% of the stuff we have to pack. Best of luck on your trip 💕
what variety of ll bean bag is it? I really love the bags with the mesh separators and can't seem to find anything like it
love it, my husband just realized that my bag is nothing bc I carry a lot. for trips to doctors I have to carry 2 bags plus my own food bc I can't eat much of what a hospital would have.
I hope you feel better soon, I've been thinking of you.
+Dawn Keith Avon Thank goodness my mom volunteers to lug my medical records when we go to doctors. She recently got a little rolling bag and its been awesome. Im sure you have a giant med binder as well lol
I definitely do Jesse says it weighs 20 pounds at least
I hope this isn’t too personal. I have EDS and just started taking Elquis for PEs. I have high Von Willebrand factor. I was wondering if your blood thinner is related to EDS. I haven’t heard of many other zebras using blood thinners. Love your video ❤
So glad to see someone else who carries around those puke bags!
So jealous and impressed with your organization!! laughed about the nosy part, because that is probably why I like seeing them too lol. Ps, if you don't want to carry around the whole box for your spare feeding tube ( which I personally don't even though I should because my tube has fallen out but I am just too lazy to carry it around with me) a lot of people just carry a Foley catheter of the same fr size of the tube that they can place to hold the stoma open instead of the whole tube. A lot smaller :)
+Brittney Davison Interesting! I should talk to my team about that! And yeah... its pretty much the only part of my life that is organized 😂
I love these types of videos, too! Mostly because I'm super nosy... Your bag makes me feel WAY BETTER about my tendency to overpack. I feel less like a packmule now. ;)
+ZijnShayatanica Hahaha you're welcome! 😂
i love what's in my bag videos too and I have a wired fascination for packing videos. If you make more of this kind of videos I will watch and love them too :D
+Linda-Marie Hamrin ❤️
I have a weird obsession with "what's in my bag?" videos, so this is right up my alley! Now, I've learned I want a phone tripod adapter!
P.S. Your outfit is super cute :)
+Colie Tee Total game changer having a phone tripod. 😊
I love your videos! You are so inspiring. ❤️
LOVE your wallet, Primroses are my fav flower.
+Dawn Laughlin 🌸
I've wanted a video like this for so long xxxxx
Hello! thanks for your video, Im in the hospital so its a great distraction! I am also a fellow spoonie and just started a vlog as well!
+chronicles of a chronically ill girl Hope you are doing better now and got to go home! 💜
Do you have a video about the essential oils you use? You've mentioned it in quite a few videos about ones for pain and nausea and wondered if you had a video about them x
+Jenni Pettican I don't have a video dedicated to it, mostly since Im still playing around and discovering them. The ones I use in my bath and bath bombs are just these big single oil bottles I bought on amazon. The blend I use on my body for pain and in the diffuser was actually sent to me by a viewer its called "rapid relief synergy blend" by plant therapy and for nausea I like peppermint oil or this little mini pocket diffuser type thing called "Quease Ease" that you can get on amazon.
My POTS won't let me take baths, it can't stand the heat :P will look into the other ones thank you lovely xxx
I was a R.N. (Registered nurse) and what I am thinking is: I hope you are sure about the date of "no use good" of your Epi Pen?? (Sorry, I'm french speaking from Montreal, Québec and I don't have the good term or limited date to use your Epi Pen!!) Take care!! Love you!
Claudette Monty bonjour fellow Franco-Canadienne! Le terme que tu cherche est le best before date ou le expiration date
And I thought my handbag was full! I can't imagine having to remember that much stuff! I sometimes get to my car before realising I haven't picked up my keys! 😂 x
Absolutely loved this video! I don't have a feeding tube but I do require lots of medications so my jumbo sized purse is filled with a whole bunch of pill bottles. I jingle with every step 😂
+Sarina Hoskins Lol yes! The struggle is real! My friends used to tease me for sounding like a "walking pharmacy" 😂
I also very much enjoy whats in my bag videos, i've fallen down that rabbit hole way too many times! Have you ever needed to use to your epipen? I also carry an epipen, though thankfully ive never needed use it. I also noticed that you had both the traditional epipen and the epipen jr in your bag, just curious if there is a reason.
+Clare Burkhardt I have never used it and yikes Im afraid to! Lol Theres not really a health reason that I have both kinda. Its just because one pack was through a refill from my old Pedi and the other was from my allergist so I ended up with both. Im pretty small so Im mot super worried about getting a pedi dose, but I would probably reach for the adult dose if I have a choice
I love that I asked you if you had an extra phone charger that night and you said no🙃
+Lauren Doherty Lol I've been using my "extra" since my other one broke. I just used it for my video 😂 Sorry!
Weird question but is there any special reason why you have two green (child dose) and two yellow (adult dose) Epipens? I hope that made sense.
+Little Anxious Turtle Theres no specific reason why I would need too different ones. One set was filled through a refill order left over from my pediatrician and the other is from my allergist. So Its just what I ended up with. Im pretty small though so im not too bothered by the thought of a pedi dose. But if possible I would reach for the adult 💜
I love what's in my bag videos too!! love that you did a spoonie edition! :) I have similar headphones too! btw your nails are adorable!! are they jamberry? they have a design just like those! :)
+Raven Moore Thank you! Yes they are Jamberry, I bought up a whole bunch of them a couple years back when a friend was having a fund raiser and am still trying to use them up 😂 I really like them though since theres no smell
Christina Doherty lol yeah they last forever I love that! and esp the no smell that was huge for me bc my hubby has a lot of the same conditions you have and so he can't tolerate many scents esp nail polish so I was so excited to find these! :) glad you did too!! :)
I have the same exact button feeding tube kit! twinssss 😇
+Abbie Christopherson Wahoo! Isn't it a total pain in the backside to carry? Lol they couldn't have made it a bit more compact? 😂
Christina Doherty right?? i feel like there's gotta be a way to compact it. let's create one and make billions! ;)
lol how do you carry all of that stuff!
What causes you to need the braces is it the EDS or something else
Just have to say I love your outfit!
+Sarah U Thank you! 💕
Where did you get your finger splints?
where did you get all your jewelry it's loevely
Wow that bag of yours is deceptively large. I used to lug around a huge bag too, untill I realised it was causing me much more pain, I have a phone and wallet combo with a shoulder strap that I wear across my body. It means I can put it down by my side or under a jacket or while I'm in my wheelchair
because some times I just feel vunerable in a wheelchair. It just occured to me that now I don't have to carry a bag, so I might assemble another bag to leave on the back of my chair, when I go out for medical appts and such. Like you I travel for most of my appts so it would be one less thing I
have to pack at the last minute. Lets face it, appts can be painful and exhausting enough as it is. Another good topic for a vlog might be how people organise their medical documentation, records, meds lists, imaging, pathology results, specialists reports, maybe what info do people have on
their medic alert, or if they have on at all and why or why not.
+NJSMKMMS Lol we call it my Mary Poppins bag
On the mask you wear in public, does the filter need changed? I have just like a cloth one with no filter.
+Katie Robinson It doesn't have a removable filter, so you kinda just have to rinse it until you feel like you need a new one. By then though I find its a bit stretched out/makeup stained anyway
Love this thank you for sharing x
do you use/have tried Sea Bands? I am wondering if you or anyone else thinks that they work for nausea.
+Lindsey I have no tried them, but I would also be interested to hear if anyone has had a good experience with them!
Yes!! They are awesome. I love Psi Bands because they are more for medical use instead of seasickness. And they come in fun colors!
I love this! Thank you!
You've probably said it in a video but where did you get your rings and bracelet?
+Kayla Green The silver ring splints are from "The Silver Ring Splint Company." They have a lovely website but need to be sized by a professional. My other rings are from etsy and bracelets are made by me, but im sure you were just asking about the splints lol
Thank you! Actually I notice your jewelry all the time. I just decided that it was finally time to ask. Haha
bagception
+herewegoagain 😂
Hi I'm doing a biomed project on ESD. I was wondering if you (or someone else with this condition) can tell me the impaction that EDS has had on your life and on your family members
+Nani O Absolutely! I would love to talk on that topic. It would be easier if you could direct message me or better yet message me on my facebook. Same name, but the link is under all my videos ❤️
Not sure if you've answered this in a previous video or not (brainfog amiright?) but I was just curious if you use any mobility aids? And if so, what? (I'm a cane-user myself)
+Alec I don't currently use anything, but as I'm sure you know it can change from day to day. I have spent quite a bit of the last few years using a wheelchair either part time or full time and I had a brief affair with a walker a few years back as well. 💕
Christina Doherty
Affair with a walker😂😂, I love that!! That made my day. I have CRPS, CFS, chronic migraine, anxiety, and probably more. I should start saying that instead of my typical talk😂
Glad to see you out of bed.
I LOVE your pants! I might just have to go out and buy them myself lol. But random question, are they are stretchy material or is it only the elastic thats stretchy? (if that makes sense)
Btw love your videos and its nice to see you made it out of bed long enough to make a video! xx
+Amber Rose The waistband and ankles have elastic but the rest is like a scarf material if that makes sense. Super light and airy! I like that it has a wide waistband so it doesn't dig in
Christina Doherty Christina Doherty Ooh it sounds nice, thank you! But yeah i agree a waistband would help, and I'm quite a textures person so for it to be nice and lightweight is always a bonus
My wife took her button replacement items out of the bulky packaging and put them in a little pencil case with a zipper. That way if fit nicely in her purse. Would that work for you?
Interesting! The only think that makes me nervous about that though is that it isn't sterile anymore. Plus if I had to have it done in an ER or something for whatever reason I would be worried that they wouldn't use it out of the package
Christina Doherty could you leave it in the inside wrapper but take it out the cardboard box? You could put the sealed tray in a fabric bag like the others you have for a little protection but less bulky 🙂
your voice is so relaxing. you should make ASMR videos!
Thank you! I think I would feel silly filming one hahaha maybe someday...
I wonder how many people watching this don't have EDS, MCAS, or dysautonomia (I have all three), and had no idea what the hell you were talking about 😂😂
You didn't develop type 1 diabetes as well, Christina, did you? Or is monitoring blood sugar more about being sure you have enough carbs and nutrition?
Andrea Hultman I remember her mentioning something about her rates causing sugar spikes I think in a vlog
+Andrea Hultman As Sarah mentioned I have been having issues with my blood sugar spiking and dropping these last few months, but it seems to be more related to my feed schedules. I am starting to get it stabilized by changing my schedule around so it seems like it isn't really true diabetes 💜
I really like this video
Woa! I have a clotting Disorder (Lupus Anticoagulant) and I've had to take Lovenox injections (ouch!). But did you say you have Heparin too? Do you use both the Lovenox and Heparin daily? And do you have to check PT/INR's to see how thick your blood is? Are you prone to clots? Sorry if this is too personal, it's just interesting to me since I live with the fear of clots all of the time, and it seemed like your blood must be very thin using both thinners, but could it be because you cannot swallow a blood thinner tablet like Warfarin (Coumadin)? My condition is known as "sticky blood" and so I thought my blood thinners were rather strong until I saw you with both. I love your video though! I love watching the What's in my Bag videos a lot!
+Beth Wade Hey! My doctor actually thinks I have sticky blood as well. We are still running panels. But I am on the lovenox, heparin (to keep the PICC free of clots) , and asprin. I had a stent placed in my jugular vein a few months ago and after that I was on high dose aspirin and Plavix and lemme tell ya, now that was thin blood 😂 We aren't quite sure if I have a clotting disorder, I have had a few TIAs, or if Its just because I have narrowing in the vessels of my brain, but the blood thinners help my symptoms a lot.
Very interesting. I am in a group called Antiphospolipid Syndrome Lupus Anticoagulant on Facebook and someone there just asked for prayers for their daughter who had EDS and Lupus Anticoagulant. I was wondering if there is was link....both appear to be autoimmune connected. Stay safe. And yes, all of those thinners! It's amazing you aren't Anemic! Good luck on your blood tests. I remember when they were testing me, they took 14 vials of blood at once! I had to sit there and have some snacks to keep from passing out because they took so much. Hopefully if they are just trying to check for the sticky blood, you won't have to go through all of that! Hugs. Let us know how it goes!!!
I love the blue tape from CVS!!! If you can't find it let me know and I will send you some. I live across the street from a cvs.
I feel like I was watching harry potter for a moment when Hermione had a magical bag that could everything in it.
+Andrea Durie Hahaha we call it my Mary Poppins bag! 😂
Hi there happy Fourth of July I know how you feel I'm so sick these days tremendous pain still need to get on get funding for healthcare life can be hard very very hard I'm very thankful because it could always be worse now let's see what's in that bag of yours! Thanks for sharing😇😇😇😇😇😝😇😇😇😝😝😝😝😊😊😊😊😊😊😊😇
Somewhere in that bag is the usual loose change and period products. 😂 jk It looks like you've got a lot to think about. 😬
You've gotta have some strong arms girl! I think it'd be interesting to see what you bring with you when you travel.
+Sarah Poison Lol yup, Im gonna be ripped 😂
hi! I just came across your channel today...It's nice to meet you! Love your smile even tho your going through a rough patch. I'm right there with you on a bag inside a bag inside yet another bag! My 3 children and myself have EDS and my teenage son and I both have pots, another kiddo with autism and adhd, so I have a lot in my bags! I hope you begin to feel well again soon! Gentle hugs!