omg we are getting so close to 1000 subscribers thank you so much I can’t believe it!!💕 I hope you enjoy this weeks video, this was definitely a couple very good days. Right now I am going through a pretty big flare up and having a difficult time managing symptoms, please give me some of your tips on how to get through a flare up, my nausea is soooo bad. But I hope you all have a beautiful weekend💚
@@loislaine2762 my usual methods that help like zofran and venting aren't helping it is so strange I have no idea what is going on! I am sorry you are struggling with it too and I hope he is able to help you too!
Mestinon has helped to reduce my symptoms a lot. It's an older medication, but a new option to treat gastroparesis, chronic constipation / IBS-C, and digestive motility issues. It also has few side effects. One side effect is that it increases saliva production, which is good for me since that counteracts the dry mouth one of my other medications gives me. The usual anti-dopamine drugs that they give to treat nausea give me really bad drug reactions, so I can't have that type of drug.
Thank you for sharing your life with us. I like the fiber arts as well. I’m a crocheter with some sewing experience I mostly make stuffed animals. Also that’s so exciting that your having some good days. Good days are such a blessing.
aww thank you so much that means a lot! oooo I love that you are crafty too! I feel like it is such a good coping mechanism for this condition because often times I can still do some of it while I don't feel the best and it is such a nice distraction. And yes the good days are such a blessing!
I just wanted to leave a quick comment just saying thank you, your videos have really helped me recently. I had to get an NJ placed for the first time a few weeks ago. When it became clear in January that the a tube was an inevitability and it looked like I might be forced to jump straight to a GJ (my local hospitals won't do nasal tubes outpatient), I found your channel looking for videos on other people's experiences. Hearing your experiences and watching your vlogs helped me calm down and kind of prepare myself a bit for the possibility of an NJ or GJ. I actually was inpatient when you decorated your IV pole, an idea which I loved. I happened to have an extra pole so I was inspired to decorate mine a few days ago with paint, orange/pink flowers, and ribbons. When I wake up in the morning and see the pole it doesn't stress me out like it did before, now it makes me smile because it is so pretty! And the other day I looked up the "Teether" snacks you bought from Target in one of your vlogs. The ingredients were all things that have historically been safe for me so I bought some. I've definitely always been the type that eats when they are bored, so I've been struggling with not having something to munch on that won't get stuck in my throat or hurt my stomach. These satisfy that itch! :D I also did pelvic floor therapy. I "finished" in December, but now my doctor wants me to start back up again and get a more recent manometry test. Pelvic floor therapy definitely is all up in your business, but my therapist also is really nice which helps. I personally didn't find it super helpful last year, but I know some people who it helped a lot. Maybe I need to do more intense exercises or something. Best of luck with your therapy.
Aww omg this is such a sweet comment thank you so much, this made my day! I am so happy my videos were able to help you become more comfortable with a feeding tube. They definitely can be intimidating. I went from thinking I was okay one day to having a surgical tube the next. It was a huge adjustment but definitely not as scary as I thought and has helped so much and I am sure it will help you tremendously too. Aw yay I am so happy you decorated your pole! It seriously makes a huge difference in changing your mood and yours sounds so pretty! And I was so happy when I found the teether snacks myself because I don't eat dairy and gluten for the most part and they are such a light little snack that help a lot with just being able to experience the sensation of eating and chewing because sometimes I get so frustrated that I am missing out on it but those snacks help and I am happy to hear they help you as well. Pelvic floor therapy is definitely all up in your business but like you my therapist is really nice as well. So far I haven't noticed a difference but i have only gone twice so there is definitely still a chance it can work! I wish you the best with your symptoms!
Glad to see you received your drainage bags! Finding your lost earring was a bonus - those always show up when you're not looking for them. Do you dip pita chips in the hummus to eat it? I've seen a sweet cinnamon pita chip that would go really well with the snickerdoodle hummus! They make tiny funnels that would make refilling the spice containers quicker and less messy. I would've been tempted to snort the spilled cinnamon, which would probably be a bad idea. lol Your cats add an extra layer of fun to your videos! :) I laughed when they were chasing each other down the hallway when you were trying on outfits.
yes I am so happy i got my drainage bags too they are so helpful! I do not have pita chips because I don't really eat gluten, I ate my hummus with veggie chips and it was super delicious. And I had little funnels but I think too little because it kept getting clogged haha but it all worked out in the end. And I was laughing while I was editing my video too as my cats were chasing each other down the hallway because they were so loud haha
Amazing. Minus a few moments you seemed almost like you didn't live with chronic pain every day. I don't have this condition yet I cant help but be drawn to the energy your videos give off.
@@byekatt And so far pelvic floor therapy is going well! I only had two official therapy sessions so far so I haven't noticed much of a difference yet but I am hopeful. It is definitely a little awkward and personal but I am thankful my pelvic floor therapist makes me feel comfortable and is really good at holding a normal conversation while its going on so I am not as focused on the awkwardness of it. I wish you the best of luck with yours!
It’s great that you’re feeling better energy wise! I never knew that you had to fill the tube extension with water before connecting it until I saw this other RUclipsr doing it and now you too. I’ve had my mic-key tube for over a year and I didn’t know. 🤦🏻♀️I will definitely do that from now on.
Me too! Haha that’s okay! I only knew because of my background in nursing but when I got my tube switched to a button no one taught me how to use it so for people who don’t have a background in feeding tubes they may not know that!
I am so happy for you that you are free from the tube all day. I am learning about the tube feedings. Do you mind me asking, what is the difference between wearing one all day and just doing night feedings? Happy freedom day!!! You did it! YOU GO GIRL :)
Thank you! And the difference is that I was just able to get it at a high enough rate where I could run it over 12 hours instead of 24. Same amount of nutrition just in a shorter period of time so I didn’t have to carry around my feeds all day!
Im a week in from having my nj tube reinserted after 3 months without it and am also struggling to get up to goal rate. Can’t wait to have more energy though. I already feel a bit better cause we were able to get my potassium up to normal while in hospital. I managed to do some baking yesterday for the first time in over a month which was exciting because I love doing it but haven’t had the energy recently
It’s okay to struggle your body needs some time to readjust! You will get there eventually and the energy will slowly start to come back and it will feel amazing! I am glad they were able to get your potassium back up that will definitely make a difference. And aw I am so happy you were able to bake! Baking always makes me feel better and when I go too long without being able to do it, it makes me a little sad. I love hearing about the small improvements you are making💕
I have 4 different kinds of sizes of clothes because it all depends on the day and time and bloated I am. So I totally understand wearing big size of clothes.
Hey there, another excellent video👏 I appreciate that you guys have a nice place and every Ninja product made😁 yet you still will shop at goodwill. Also, you are from Wisconsin, that is where I live and it’s true, winter still stinks. But the good news is, they are getting warmer and less snow every year. Global warming is working. I live in Sheboygan, where did you live here? Hope your feeling better 💪
Thank you so much! Haha yes I never realized how much ninja items we have😂 and we love goodwill and thrift shopping! We prefer to put our money towards nicer necessities that last but don’t like to spend a ton of money on things like clothes. And I lived in Appleton! Thank you!
Weirdly fries (usually) sit quite well in my stomach also, it's so weird!! I'm struggling so much with bloating at the moment, I've actually been thinking about buying maternity trousers
I feel like fries sitting well for us with Gastroparesis is common I don’t know why but I am not complaining because I love them! Aww sorry to hear about the bloating, it is so uncomfortable. Definitely do whatever you need to do to help you get more comfortable!
definitely not even close to that yet! Even on my good days I often feel overwhelmingly fatigued and some days I don’t feel well enough to do anything. My body is not consistently healthy enough and it is proving that right now. I was doing really well then all of a sudden on Thursday my symptoms intensified and I can’t get control of them and I’ve been in bed for three days unable to do anything and I have no idea when it is going to get better. Everything is still so unpredictable with my body right now and I definitely don’t want to put myself under an immense amount of stress. I am just focusing on finding the positives in this new lifestyle and will take things one step at a time!
I understand.... my body does the same thing. Feel almost normal for a day or 2 and then it’s 3 days to play catch up with my body upsets . Feel better and hopefully better days coming!
I know I comment a lot but you need to know what an inspiration you are. You keep me going when I want to give up. I also have learned so much about feeding tubes from watching your channel. I have a few questioins for you since I just moved to FL and in a past comment you gave me your instagram info so I could ask them. I do not have an instagram though, so is there any other way? If not, I will try making one. Sending good vibes your way.
Don’t feel bad for commenting a lot! Thank you so much for saying that it means so much for me and I am so proud of you for continuing to fight! And you could probably email me with the questions my email is in my description
omg we are getting so close to 1000 subscribers thank you so much I can’t believe it!!💕 I hope you enjoy this weeks video, this was definitely a couple very good days. Right now I am going through a pretty big flare up and having a difficult time managing symptoms, please give me some of your tips on how to get through a flare up, my nausea is soooo bad. But I hope you all have a beautiful weekend💚
No ideas for the nausea as I am struggling with it too! I was just referred to Dr. Cline and really hoping he can help as I am quite underweight now.
@@loislaine2762 my usual methods that help like zofran and venting aren't helping it is so strange I have no idea what is going on! I am sorry you are struggling with it too and I hope he is able to help you too!
Mestinon has helped to reduce my symptoms a lot. It's an older medication, but a new option to treat gastroparesis, chronic constipation / IBS-C, and digestive motility issues. It also has few side effects. One side effect is that it increases saliva production, which is good for me since that counteracts the dry mouth one of my other medications gives me.
The usual anti-dopamine drugs that they give to treat nausea give me really bad drug reactions, so I can't have that type of drug.
Thank you for sharing your life with us. I like the fiber arts as well. I’m a crocheter with some sewing experience I mostly make stuffed animals. Also that’s so exciting that your having some good days. Good days are such a blessing.
aww thank you so much that means a lot! oooo I love that you are crafty too! I feel like it is such a good coping mechanism for this condition because often times I can still do some of it while I don't feel the best and it is such a nice distraction. And yes the good days are such a blessing!
I just wanted to leave a quick comment just saying thank you, your videos have really helped me recently. I had to get an NJ placed for the first time a few weeks ago. When it became clear in January that the a tube was an inevitability and it looked like I might be forced to jump straight to a GJ (my local hospitals won't do nasal tubes outpatient), I found your channel looking for videos on other people's experiences. Hearing your experiences and watching your vlogs helped me calm down and kind of prepare myself a bit for the possibility of an NJ or GJ.
I actually was inpatient when you decorated your IV pole, an idea which I loved. I happened to have an extra pole so I was inspired to decorate mine a few days ago with paint, orange/pink flowers, and ribbons. When I wake up in the morning and see the pole it doesn't stress me out like it did before, now it makes me smile because it is so pretty!
And the other day I looked up the "Teether" snacks you bought from Target in one of your vlogs. The ingredients were all things that have historically been safe for me so I bought some. I've definitely always been the type that eats when they are bored, so I've been struggling with not having something to munch on that won't get stuck in my throat or hurt my stomach. These satisfy that itch! :D
I also did pelvic floor therapy. I "finished" in December, but now my doctor wants me to start back up again and get a more recent manometry test. Pelvic floor therapy definitely is all up in your business, but my therapist also is really nice which helps. I personally didn't find it super helpful last year, but I know some people who it helped a lot. Maybe I need to do more intense exercises or something. Best of luck with your therapy.
Aww omg this is such a sweet comment thank you so much, this made my day! I am so happy my videos were able to help you become more comfortable with a feeding tube. They definitely can be intimidating. I went from thinking I was okay one day to having a surgical tube the next. It was a huge adjustment but definitely not as scary as I thought and has helped so much and I am sure it will help you tremendously too. Aw yay I am so happy you decorated your pole! It seriously makes a huge difference in changing your mood and yours sounds so pretty! And I was so happy when I found the teether snacks myself because I don't eat dairy and gluten for the most part and they are such a light little snack that help a lot with just being able to experience the sensation of eating and chewing because sometimes I get so frustrated that I am missing out on it but those snacks help and I am happy to hear they help you as well. Pelvic floor therapy is definitely all up in your business but like you my therapist is really nice as well. So far I haven't noticed a difference but i have only gone twice so there is definitely still a chance it can work! I wish you the best with your symptoms!
I’m so happy to hear your energy levels are starting to increase!
It was definitely a lot nicer! I am hoping after the little flare I am going through is over I can get back to feeling that way!
i absolutely love altering clothes too ! i’ve recently got into it, and it’s quickly become my favorite hobby! ✨
I love to hear it! I stayed away from it for so long because I thought it was too hard but it is so fun to learn! Glad you are enjoying it too!
Glad to see you received your drainage bags! Finding your lost earring was a bonus - those always show up when you're not looking for them.
Do you dip pita chips in the hummus to eat it? I've seen a sweet cinnamon pita chip that would go really well with the snickerdoodle hummus!
They make tiny funnels that would make refilling the spice containers quicker and less messy. I would've been tempted to snort the spilled cinnamon, which would probably be a bad idea. lol
Your cats add an extra layer of fun to your videos! :) I laughed when they were chasing each other down the hallway when you were trying on outfits.
yes I am so happy i got my drainage bags too they are so helpful! I do not have pita chips because I don't really eat gluten, I ate my hummus with veggie chips and it was super delicious. And I had little funnels but I think too little because it kept getting clogged haha but it all worked out in the end. And I was laughing while I was editing my video too as my cats were chasing each other down the hallway because they were so loud haha
@@KennaKrueger Look up Toufayan's gluten free pita chips. :)
Omg no way I’ve been looking for gluten free pita chips I will definitely have to try those thank you!
Amazing. Minus a few moments you seemed almost like you didn't live with chronic pain every day.
I don't have this condition yet I cant help but be drawn to the energy your videos give off.
Yes I was thankful for those days! Currently having less days like this but I am hoping for more days like this soon! And thank you!
I love the kitties in the background of the try on haul
those two always love to play with each other!
i’m so happy you’re starting to your energy back!!! ❣️ love your videos every week ☺️🤍
also how is your pelvic floor therapy going? is it helping? i start mine in june and don’t know what to expect!
Thank you so much!
@@byekatt And so far pelvic floor therapy is going well! I only had two official therapy sessions so far so I haven't noticed much of a difference yet but I am hopeful. It is definitely a little awkward and personal but I am thankful my pelvic floor therapist makes me feel comfortable and is really good at holding a normal conversation while its going on so I am not as focused on the awkwardness of it. I wish you the best of luck with yours!
It’s great that you’re feeling better energy wise! I never knew that you had to fill the tube extension with water before connecting it until I saw this other RUclipsr doing it and now you too. I’ve had my mic-key tube for over a year and I didn’t know. 🤦🏻♀️I will definitely do that from now on.
Me too! Haha that’s okay! I only knew because of my background in nursing but when I got my tube switched to a button no one taught me how to use it so for people who don’t have a background in feeding tubes they may not know that!
I love your videos Kenna you have the most beautiful energy! ☺️☺️☺️
Aww thank you so much that means a lot to me!
You're so strong, I really try to think of you when I feel defeated ,also you remind me that it's important not to forget your hobbies, Thank you!
aw omg you are the sweetest thank you so much! And yes don’t forget your hobbies! The hobbies are what help me make it through my hardest days
@@KennaKrueger thank you for your videos!
Aw you are so welcome!
I am so happy for you that you are free from the tube all day. I am learning about the tube feedings. Do you mind me asking, what is the difference between wearing one all day and just doing night feedings? Happy freedom day!!! You did it! YOU GO GIRL :)
Thank you! And the difference is that I was just able to get it at a high enough rate where I could run it over 12 hours instead of 24. Same amount of nutrition just in a shorter period of time so I didn’t have to carry around my feeds all day!
Im a week in from having my nj tube reinserted after 3 months without it and am also struggling to get up to goal rate. Can’t wait to have more energy though. I already feel a bit better cause we were able to get my potassium up to normal while in hospital. I managed to do some baking yesterday for the first time in over a month which was exciting because I love doing it but haven’t had the energy recently
It’s okay to struggle your body needs some time to readjust! You will get there eventually and the energy will slowly start to come back and it will feel amazing! I am glad they were able to get your potassium back up that will definitely make a difference. And aw I am so happy you were able to bake! Baking always makes me feel better and when I go too long without being able to do it, it makes me a little sad. I love hearing about the small improvements you are making💕
I have 4 different kinds of sizes of clothes because it all depends on the day and time and bloated I am. So I totally understand wearing big size of clothes.
the bloating we experience with this condition is so crazy!
Hey there, another excellent video👏 I appreciate that you guys have a nice place and every Ninja product made😁 yet you still will shop at goodwill. Also, you are from Wisconsin, that is where I live and it’s true, winter still stinks. But the good news is, they are getting warmer and less snow every year. Global warming is working. I live in Sheboygan, where did you live here? Hope your feeling better 💪
Thank you so much! Haha yes I never realized how much ninja items we have😂 and we love goodwill and thrift shopping! We prefer to put our money towards nicer necessities that last but don’t like to spend a ton of money on things like clothes. And I lived in Appleton! Thank you!
I love the bucket hut though 😅 also potato chips sit pretty well with me too. As long as I chew them like a Gazillion times 😂
Aww thank you! I definitely can be a bit too critical on myself if it isn’t perfect! Potato chips do pretty well with me too!
I want that kind of tube I just have a J-tube and it's annoying going back and forth with food and drink and having too put water by hand.
I have a g/j tube!
@@KennaKrueger We'll you are very lucky and I hope having the tube got it easy on you
I am very lucky and it has helped me so much and I am so thankful for that
Weirdly fries (usually) sit quite well in my stomach also, it's so weird!! I'm struggling so much with bloating at the moment, I've actually been thinking about buying maternity trousers
I feel like fries sitting well for us with Gastroparesis is common I don’t know why but I am not complaining because I love them! Aww sorry to hear about the bloating, it is so uncomfortable. Definitely do whatever you need to do to help you get more comfortable!
Just curious .,, if you can do your feeds overnight do you think you can go back to working your nursing job?
definitely not even close to that yet! Even on my good days I often feel overwhelmingly fatigued and some days I don’t feel well enough to do anything. My body is not consistently healthy enough and it is proving that right now. I was doing really well then all of a sudden on Thursday my symptoms intensified and I can’t get control of them and I’ve been in bed for three days unable to do anything and I have no idea when it is going to get better. Everything is still so unpredictable with my body right now and I definitely don’t want to put myself under an immense amount of stress. I am just focusing on finding the positives in this new lifestyle and will take things one step at a time!
I understand.... my body does the same thing. Feel almost normal for a day or 2 and then it’s 3 days to play catch up with my body upsets . Feel better and hopefully better days coming!
Yes that’s exactly what it is like! Thank you and I am wishing you good symptom days too!
I know I comment a lot but you need to know what an inspiration you are. You keep me going when I want to give up. I also have learned so much about feeding tubes from watching your channel. I have a few questioins for you since I just moved to FL and in a past comment you gave me your instagram info so I could ask them. I do not have an instagram though, so is there any other way? If not, I will try making one. Sending good vibes your way.
Don’t feel bad for commenting a lot! Thank you so much for saying that it means so much for me and I am so proud of you for continuing to fight! And you could probably email me with the questions my email is in my description
@@KennaKrueger That would help me so so much! You have no idea. TY and keep on kicking butt!
You are so welcome and thank you!