Thank you for sharing the reality of your illnesses with the world. I know how scary it is to be vulnerable and put yourself out there. It broke my heart seeing you in so much pain after the surgery but I am so so happy that you're doing better! Keep fighting girly
I’ve been watching these vlogs all the way through today so thought I’d comment on the latest one. SOOO glad to see you finally doing a bit better. You’re so strong and brave, both for going through this and sharing your journey. I so hope that things continue to get better, and I really look forward to seeing the next chapter of your adventure! Also, I love the medical band paper chain on your pump stand ❤️
Hello I just found your channel and I am inspired by you. You are an amazing young lady. My grandson, who lives with me, was recently diagnosed with Ewings Sarcoma, but he has an ng tube and I found your video so helpful. I would like to request a video. We are struggling with giving and honestly remembering when it was given etc. We are all new at this. We saw your medicine white board and would love a video on how you set up, what you put on it, etc. Thank you! Stay strong!
I like your new saying about life with chronic illness. Do you have a hashtag for it yet? I'm sorry you had such a hard time, but I'm sure it will be worth it in the long run. Looking forward to your next vlog!
I don't know if you'll see this since you posted this a while back but there's an app you can download, on your phone, called "Medisafe" and you can put all of your medication information in it, times taken, by what route, etc. It will then remind you when they're due and will keep up with what you've taken or not taken that day. I take a lot of meds at 5 different times during the day and this app has really been a life saver for me!! It even lets you add your "as needed" meds! It's saved me a couple of times from taking the same medicines twice. You can even enter the amount of medicine you have and as you take it it'll subtract it for you and let you know when it's time to refill it. It's really a cool little app and would save you from having to write everything down all the time.
Very beautiful videos. Thank you for sharing your story representing the real struggles, but also always sending a positive message. You are really helping me go through a rough time. Thank you for being you, you are a blessing :-)
SusiOfficial I've seen your sweet messages on a few videos now and they make my day! I went and checked out your channel and I subscribed immediately! I love your videos! So from one video maker to another great job and keep making great content! Btw I love your accent!!
i had a childhood medical issue; epilepsey. i now have heart issues; heartattack a few days ago. i have to wear a defibulator it was mild but they want to operate. u have a very nice smile and a positive outlook on your life. god bless u
YOU are such an incredible person, I am really amazed at your strength and hopefulness in spite of your seemingly never ending challenges. I also have EDS were in the process of finding out WHICH one but I don't feel I digest my food and suffer like maddog just trying to find foods that don't cause me soo much pain. It's hard to KNOW you NEED to eat to live but sometimes the misery food causes me makes it not worth eating.. Hopefully you heal well from this and never have to suffer ANY infection like you did it made me cry to see you in such awful pain and I really understand how it feels to be trying to find the right medication to bring your pain down and NOT have those side effects bring things to a complete digestive halt.. And let me tell you, I understand blood sugar crashes, recently I had a glucose of 40, then it dropped down to a 38 in just 20 minutes AFTER I ATE a yogurt and an apple TWO HOURS before!! It took over 3 hours for my glucose to go back up & they say I am not having trouble digesting my food LOL... WE know better right? lol I hope & pray that you can someday overcome having to utilize such measures to ingest your nourishment safely & be able to have less limitations but until then keep being the fantastic, strong, resilient, hopeful and positive YOU that you soo brightly ARE!!!! You ARE A SUPERSTAR!!!! (and not because of this VLOG, just for being YOU!!!) Thank you for being soo brave and transparent with all of us and documenting your struggles and accomplishments to express soo vividly to the world just how difficult this can be getting through all these steep roller coaster hills we make it through with EDS who are watching... From not soo sunny California God bless YOU precious Warrior!! Little Miss Life with Stripes
Keep keepin' on! :) when you hit "adult" age or age out of children's... (21 I think) please don't ever go to Methodist in slp! (Had way too many issues there myself to ever recommend it) United or the U. Both in st paul. Well, the u has campuses in mpls as well. Gilette lifetime is amazing too! (For non hospital appts)
OMG seeing you work your puppy was so great!!!! Made me cry. Pets are absolutely the best!! You mentioned that you couldn't eat.... Please pardon my ignorance but is this just because you're recently home from the hospital? I noticed on another video you drank a diet few....i was just curious. I'm trying to learn about your illness. I'm so sorry you have to deal with this every day sweetie. Your attitude is so inspiring. Makes me take a look at mine. You're loved by many!! Hugs and kisses!! XOXO
I have Gastroparesis which is where my stomach doesn't empty food fast enough and I get sick. I am able to eat/drink soft things slowly over the day (typically 300-400 cals a day) by mouth and I get the rest through my tube. I couldn't eat enough to keep my weight up and I was so so sick all the time. Thanks for the question!
If you don't mind, the GJ tubes - are the different colors/tubes because one goes to each area? I'm sure it's a silly question, but just "realized" that possibility.
In Canada you barely get pain meds these days for any surgery even abdominal surgery’s except bowel surgery and only when in hospital for 4 days at home you only get Tylenol and ibuprofen a few get t3.
Thank you for sharing the reality of your illnesses with the world. I know how scary it is to be vulnerable and put yourself out there. It broke my heart seeing you in so much pain after the surgery but I am so so happy that you're doing better! Keep fighting girly
Thank you for sharing all of this with us Mickey❤
I’ve been meaning to watch all 5 of these videos together for a while now; a sleepless, high pain night appears to be the perfect time! 😂
I’ve been watching these vlogs all the way through today so thought I’d comment on the latest one. SOOO glad to see you finally doing a bit better. You’re so strong and brave, both for going through this and sharing your journey. I so hope that things continue to get better, and I really look forward to seeing the next chapter of your adventure! Also, I love the medical band paper chain on your pump stand ❤️
Hello I just found your channel and I am inspired by you. You are an amazing young lady. My grandson, who lives with me, was recently diagnosed with Ewings Sarcoma, but he has an ng tube and I found your video so helpful. I would like to request a video. We are struggling with giving and honestly remembering when it was given etc. We are all new at this. We saw your medicine white board and would love a video on how you set up, what you put on it, etc. Thank you! Stay strong!
I like your new saying about life with chronic illness. Do you have a hashtag for it yet?
I'm sorry you had such a hard time, but I'm sure it will be worth it in the long run. Looking forward to your next vlog!
So so glad you are home and feeling a bit better lots of love xxxxxxx
I don't know if you'll see this since you posted this a while back but there's an app you can download, on your phone, called "Medisafe" and you can put all of your medication information in it, times taken, by what route, etc. It will then remind you when they're due and will keep up with what you've taken or not taken that day. I take a lot of meds at 5 different times during the day and this app has really been a life saver for me!! It even lets you add your "as needed" meds! It's saved me a couple of times from taking the same medicines twice. You can even enter the amount of medicine you have and as you take it it'll subtract it for you and let you know when it's time to refill it. It's really a cool little app and would save you from having to write everything down all the time.
OMG your dog was so happy to see you! That was so cute! She's adorable
Very beautiful videos. Thank you for sharing your story representing the real struggles, but also always sending a positive message. You are really helping me go through a rough time. Thank you for being you, you are a blessing :-)
SusiOfficial I've seen your sweet messages on a few videos now and they make my day! I went and checked out your channel and I subscribed immediately! I love your videos! So from one video maker to another great job and keep making great content! Btw I love your accent!!
Oh, wow! Thank you so much! You just made my day too :-)
@@SusiOfficial awww, you girls are soo cute!! God bless you both :)
i had a childhood medical issue; epilepsey. i now have heart issues; heartattack a few days ago. i have to wear a defibulator it was mild but they want to operate. u have a very nice smile and a positive outlook on your life. god bless u
YOU are such an incredible person, I am really amazed at your strength and hopefulness in spite of your seemingly never ending challenges. I also have EDS were in the process of finding out WHICH one but I don't feel I digest my food and suffer like maddog just trying to find foods that don't cause me soo much pain. It's hard to KNOW you NEED to eat to live but sometimes the misery food causes me makes it not worth eating.. Hopefully you heal well from this and never have to suffer ANY infection like you did it made me cry to see you in such awful pain and I really understand how it feels to be trying to find the right medication to bring your pain down and NOT have those side effects bring things to a complete digestive halt.. And let me tell you, I understand blood sugar crashes, recently I had a glucose of 40, then it dropped down to a 38 in just 20 minutes AFTER I ATE a yogurt and an apple TWO HOURS before!! It took over 3 hours for my glucose to go back up & they say I am not having trouble digesting my food LOL... WE know better right? lol
I hope & pray that you can someday overcome having to utilize such measures to ingest your nourishment safely & be able to have less limitations but until then keep being the fantastic, strong, resilient, hopeful and positive YOU that you soo brightly ARE!!!! You ARE A SUPERSTAR!!!! (and not because of this VLOG, just for being YOU!!!) Thank you for being soo brave and transparent with all of us and documenting your struggles and accomplishments to express soo vividly to the world just how difficult this can be getting through all these steep roller coaster hills we make it through with EDS who are watching... From not soo sunny California God bless YOU precious Warrior!! Little Miss Life with Stripes
You are a sweetheart! Keep it up girl. The roller coaster is only getting less hilly xxx much love
I have been watching your videos from the beginning. What does your poster say??
Keep keepin' on! :) when you hit "adult" age or age out of children's... (21 I think) please don't ever go to Methodist in slp! (Had way too many issues there myself to ever recommend it)
United or the U. Both in st paul. Well, the u has campuses in mpls as well. Gilette lifetime is amazing too! (For non hospital appts)
I’m subscribing, you’re such a tough gal! Hugs! Feel better soon
Do not give up! You are a true warrior. Love from Brazil.
OMG seeing you work your puppy was so great!!!! Made me cry. Pets are absolutely the best!! You mentioned that you couldn't eat.... Please pardon my ignorance but is this just because you're recently home from the hospital? I noticed on another video you drank a diet few....i was just curious. I'm trying to learn about your illness. I'm so sorry you have to deal with this every day sweetie. Your attitude is so inspiring. Makes me take a look at mine. You're loved by many!! Hugs and kisses!! XOXO
I have Gastroparesis which is where my stomach doesn't empty food fast enough and I get sick. I am able to eat/drink soft things slowly over the day (typically 300-400 cals a day) by mouth and I get the rest through my tube. I couldn't eat enough to keep my weight up and I was so so sick all the time. Thanks for the question!
>
If you don't mind, the GJ tubes - are the different colors/tubes because one goes to each area? I'm sure it's a silly question, but just "realized" that possibility.
PS - the smile from your pup is SO freaking cute. She's a doll!
I like your shirt.
In Canada you barely get pain meds these days for any surgery even abdominal surgery’s except bowel surgery and only when in hospital for 4 days at home you only get Tylenol and ibuprofen a few get t3.
You are beautiful and so brave..
😊. I'll pray for your good health.
Your so amazing !!!!
Don't touch your face.
Can you feel the medicines going into your body when they go through the tube?
That's look like it's hurt.
So far so good'
Why did they take out your port?
Wondering the same thing.
Just wondering what meds are you giving yourself? Just curious is all 😊 hope you're doing better!
They were some pain meds, and daily meds. I don't know exactly which ones I was doing here. They were teaching me how to do them myself
This might sound dumb where is the J tube?
Children's in MN?!!
Hi nac
my doctors think i have eds
Eggs mean fertility
7:04 you pooped better? :D