Jaquie, thanks to your wonderful attitude towards health concerns I was inspired to go back to my doctor again to have my health concerns addressed. It turns out that I was feeling so sick partly due to an interaction between two of my meds that was affecting my heart. I am starting to feel a lot better.It's all because you gave methe courage! Thankyou!!!
Whoa, Vicky, that is scary that you had an interaction. I would have hoped that if not your doctor, then your pharmacist would have caught that. Either way, I'm glad no real harm was done and that you are starting to feel better. Take care!!!
I too have some chronic illness issues. Watching your channel inspires me to keep going and keep up with my treatments and mental health care. Few people realize that taking care of yourself also means maintaining your mental well being as well. Good luck with your decision and hope you feel better soon.
I’m glad you’re waiting to make a confident decision and not rush into it. Your ability to self advocate for yourself is so awesome, yet you still value the opinions of your loved ones. Keep fighting! I know the right option will be here soon for you
You handle all these issues with Grace and determination to get through it no matter what. You are a very inspiring individual. Thank you for sharing your life with us.
I love the fast music when doing your IV fluids. Especially when it synched up and you flipped the two caps off the vitamin bottles. Good luck my dear. And stretchy Harlow!!
You have proven time and again how strong you are, so do what makes you happy, gives you a better quality of life and a better experience. You are in the thoughts of this warrior.
I had a GJ placed in August of 2012 and had them separated in July of 2014. I have gastroparesis and full small bowel and colon dysmotiloty as well. I started TPN in the fall of 2013 after I had tube feeding formula backing up into my stomach from my J portion of my GJ even when it was in place and at a rate of 10ml/h. We hopped by placing a Mickey J tube with the long tail on the end (can be as long as 45cm tail) we' get far enoughh into my small bowel to prevent reverse motility and allow me to wean off TPN. I was able to get down to 5 nights of TPN for awhile. The surgery for the J tube wasn't horrible after I got over the ileus (took a week). They placed low profile tube right away so I ddn't have a long tube right off which was fabulous.
I am so impressed with how you are praying through this until you have peace with how to proceed. Far too often I allow others to persuade me into actions that are not necessarily best for me. Thank you for sharing your process of making the best choice for you. I'm keeping you, your family, and your medical team in my prayers as you continue on this adventure.
I'm sorry your having such a hard time with your feeding tube :( I have to agree that YOU need to be at peace with your decision, and I will keep you in my prayers that you come to peace soon with what you need/want to do, Your an amazing woman and I for one am thankful for all that you share with us! Even if someone is not chronically ill you provide so much information, and show how much compassion means especially when you have an invisible illness so thanks again to you and your family I love your vlogs 💖😚❤🎀
If you continue with the gj placement ask for a back up g button. You can take out the gj and replace it with the g so at least you can vent. Since its a simple g placement you don't need sedation. We have a back up g for my son's gj for emergencies like kinking
This is such a helpful idea. I would not have thought of this (I don't have a tube, but am learning). If it isn't a good idea for Jaquie for whatever reason, you may very well have helped someone else with your idea.
Sending love and praying that your find peace in whatever decision you make. We are here for you always. If it wasn't for you I would have never gotten officially dxd with hEDS from mayo clinic. Everything you do in sharing your story and spreading awareness, you're truly an inspiration ♡
I have no idea what you are going through, but you inspired me to get a service dog, and helped teach me so many different ways my STiD, Holly, can help me with my disabilities. Thank you for all of your help, even if you didn't know you helped change my life for the better, and helped me keep moving forward.
Jaquie, I personally do not suffer from any chronic illnesses, but your vlogs inspire me to keep my head held high no matter what comes my way. Watching Harlow being the adorable pup she is always makes me smile. Whatever decision you make regarding your tube, I hope it will benefit you.
Praying for you Jaquie! You have so much courage and are such an inspiration to so many! I’ve been following your blog and can’t thank you enough for your positivity and for sharing your story. I’ve been legally blind my entire life, and have been dealing with a few chronic illnesses since 2011.
I always find that writing out worries/issues with any large decision helps immensely. I know that many people find writing therapeutic. It's cool that you do this too! I don't feel so weird now :) Also, at my school we started giving out gratitude journals, where you spend a few minutes a day writing down the little things that you're grateful for. It actually has been proven to help with sleep, which is interesting! I just thought that it was a cool idea. I am so thankful for your videos, and the community that they provide. Everyone in the comments is lovely and supportive, which is so refreshing!
Maybe make a pros/cons lists for keeping a gj and separating. Might help make the decision easier? Just remind yourself you WILL make the right decision and if the one you choose doesn't work you can always go back. It's going to get better. You will get past this. Just keep fighting!!!
It's great your care team is able to work with you so quickly and efficiently when things come up! Hopefully whatever option you choose ends up making your life easier in the long term.
Praying for you sweet girl. I'm battling major health issues right now & I totally understand having peace with your decision. Take your time & listen to the Lord, He will direct you. Praying for clarity for you & your medical team. Lord Bless you.
I think you're definitely right about having a better perspective once you have the surgical consult. Having your questions and concerns answered by the surgeon is the best way to gain peace through knowledge.
So lucky you have so much support thru all your illness issues....it’s very tough to go thru crap mostly on your own and having to financially fully support yourself. Bless your family!
Jaquie, you’ll know what to do when the time is right. I get that you must feel very frustrated and unsure about all of this. However, I’m sure you’ll make a good decision. I wish you all the best of luck with everything that’s going on. Hope you’ll feel better soon. You really inspire me to make the most of each day, thank you for that.
Decisions are definitely hard, and I think that you’re approaching it in the best way possible. You’ve got this. I keep pushing through health and chronic pain issues because you inspire me. Thank you. Positive thoughts your way ❤️
Hi Jaquie! I understand your family and doctors wants but I’m glad you’re still deciding what you want. It’s your body after all. I’m not one to comment all the time but I’ve been watching since just before you got your feeding tube. You are very inspiring. To see you fight every day is so inspirational. Thank you for all you do
For survival situations, I've always heard the "3-3-3" rule is a good one to follow. you can live 3 minutes without oxygen, 3 days without water and 3 weeks without food. These aren't hard and fast rules, for example, in a hot dry climate the 3 days without water is not realistic. In Death Valley in the summer hou can die in HOURS without water, which is why they say to take 1 gallon per person per day even in the car, because if you break down it may take more than an hour to get help. You'll need that water to survive.
You are absolutely right to do what you have to do, in this case meet with your GI doc and have the consult, to have peace and confidence in your decision. Your family is coming from a place of love and a desire to see you have an easier time with things and less frustration. We all love ya, Jacquie and whatever you need from us, whether it is support, suggestions or just a forum to get your information out there, we are all here because we want to be. Because we care. Take it easy over the next few days and I'll put in a good word for you with the Big Guy tonight when I say my prayers! xo Heather🇨🇦
You’re so incredibly inspiring even when you’re so human and frustrated coz the kinked feeding tube honestly just sucks. But you’ll pull through as always. Hoping you keep well and get better ASAP! Praying for you and sending you lots of love ❤️
We love you guys! You’re so strong. And you will figure this feeding tube dilemma out! Just another small bump in the road. We’re all rooting for you ❤️
I hope you're feeding tube issues resolve themselves quickly. I can feel how frustrated you are and I can understand why and I just want you to know that I'm rooting for you and sending you prayers and hopefully things will turn out better. You are a warrior. Thanks for sharing your life
Go for it! It is worth the "risk". Having two tubes will eventually give you so much more will to live and go on. We all know how no nutrition is making you more sick than you already are! You take SUCH GOOD CARE of your current stoma and I'm SURE you are able to take care of another stoma too! I can understand how you feel, but I also respect your choice. We all think you can do it! You are such a strong woman to all of us. You give us hope, you show us what dedication means, and you show us what love means! Thank you for making these videos, Thank you for giving me strength and a will to live!
Tools to have open freedom. That's what you've taught me. I started watching you this year. My knees buckle, my body spasms, and my PTSD is so bad that at times I lose feeling to the world (literally in a ghost state). I used to avoid my cane so much that I would have to sit several times to just make a block. I used to avoid needing a walker so bad that I would invite crawl from one room to another. I used to avoid pain medicine so much, that I would be unable to move with painful tears (the ones that just fall, but not really emotional). Growing up, crying out or showing any pain was attacked by my mother, saying I was too young to hurt. But she was blind to the fact that anyone could feel besides her. I tell you this to maybe help you. I use the walker, I use my cane, and I'm more open to pain medicine when it's hard to move. I let myself take days off from chores, and I let myself rest. I'm finally beginning to be okay because instead of those things that scare me or originally made me feel like a failure, are now tools for my freedom. With your kinking, remember to listen to what would make you feel free, and even if it is scary or hard, it's another tool and another chance for a bit more freedom. I support you either way, and will be here with you (even though you don't really know me hahahahahaha....) because you supported me without even knowing it. (I'm also trying to figure out a way to go to the doctors again, fight for them to listen this time.)
I also have EDS type 3. and i am a mom to a handsome little boy named Hunter he is 2 years old. and we watch your videos all the time together. just wanted to let u know we are thinking about you and we are sending prayers your way get better soon. and give Harlow loves for me. We love you
Jaquie, you forgot another pro: you can use 2 pretty matching designs for your feeding tube pads 😉. Whatever you decide, you will always have your family with you.
I’m praying for God to give you peace in the tube situation. I myself was in the position you were in and I had no choice but to separate my tubes. It’s hard and rough but in the end it ended up easier for me personally. Harlow is adorable and keeps you great company and is a great service dog. She’s amazing. Keep on fighting and Praying on this. I will have you in continuous prayers.
Much luck with your tube Exchange. Kitty and I will be praying for you. We'll be adding you to our prayer list at church. One can't have too many prayers. Can't wait to hear how things are going. Best wishes and hugs, Donna ❣Kitty 🐾
I hope you're resting easy... I've come to look for advice from your videos, you always knew what to say, and have always helped me through my own illnesses. Wish i could've heard your words in real time, i could use them right now. Always here with us❤
I get how big and scary the whole operation is, and I definitely understand and support you need to be sure 100% that it’s the right choice for you. I also get why your loved ones feel you should get it, because I feel the same way: it’s scary to see you go without nutrition for several days when your body needs it so desperately to keep on fighting all of your chronic illnesses. And I’m also pretty sure it’s even scarier for them because they witness all of it in real life. It’s also so frequent... there must be a solution, wether it’s two feeding tubes or something else, that makes it more manageable. Because no in itself you being off feeds for three days isn’t life threatening, but I feel it gets to be an urgent situation when it happens almost once a month and messes with your body this badly :/ In any event, I have no doubt you will find a way to deal with this! My thoughts and love to all of you
It's hard for us all to not get involved at this point. You all are like family to all of us on here. In our thoughts daily! Even my mom asks how you are today! We all worry about you and are just trying to toss ideas to you. You never know when there may be an ah-ha moment that strikes that may be that "thing" you were waiting for to click and give you the answer! Believe me.. I'm as stubborn as they come when it comes to my spina bifida and other medical stuff I deal with. But it's still nice to know, ppl are trying to help even when they have no clue! 😂😂 then i realize.. it's just out of love. Thanks for letting us peek into your lives! No matter what, you have to feel good about what you decide. You got this!
I totally understand what you mean about needing to make the decision for yourself. I did the same in making my port decision and had some people telling me to do it and some not. I ended up making the right decision for me. I hope your appointment helps you make one 🤞 was really hoping they would get you in before Thursday, but then I thought maybe he had to order the button again? Much love
I'm sorry you're having to continue to deal with this. I know that eventually you'll come to the best conclusion for your body and your journey. I hope things work out so you can have some nice, relaxing time with your family this holiday season without any tube issues. Much love from NY!
Good luck with your feeding tube troubles Jaquie!! I know you'll make the right decision!! You can do it!! Thank you for sharing your story and spreading awareness!!
An old door with interesting features painted an orange/terracotta color would look lovely as a headboard. You seem attracted to blues/oranges, love the backpack. And a throw pillow with different texture will add interest. As for making decisions I make sure I have all the information then sit with it. Mull it over, listen to advice but ultimately go with my gut. I do this with my health decisions and it's how I parent too. If I'm at peace with the answer then it usually is the right thing for you. You have a future as an educator. You are clear, concise and very well spoken. An a positive role model for those of us with the invisible health issues. I have no worries you'll work this out just fine. Xox
Hope you are able to make a decision with some peace in it at the same time. Over the course of 2016 to 2017 I had constant intense day and night lower abdomen pain. As I had uterine fibroids and rare Turners Syndrome that makes it difficult to have children, the logical step was a hysterectomy. Every time I got prepared for the surgery I cried and felt rotten emotionally. A bunch of m.d.s and friends thought I was nuts for not doing it. I finally went and spoke to my Turner Syndrome specialist and she suggested to have a hysteroscopy to remove a new polyp (similar to what my obgyn offered) and a diagnostic laparoscopy to have the surgeon see what was happening without Uterus removal. When I woke up after my surgery in August my pain was 100 percent gone! I felt bruised but fantastic. Of course I had a few weeks recovery, but this far in my journey it was the best decision for myself. The best you can do, is what you are happy and comfortable with. In the end it is in gods hands and it will be ok. Sending love and good vibes. Kate
Continued prayers for you. Praying for guidance and HIS wisdom in this current situation. Keep fighting. You’re such a great inspiration and encouragement to so many!
Much luck with your tube issues. You know whats best for you. Kitty and I will be praying for you. Will have you on our prayer list at church. One can't have to many prayers. Lol Best wishes & Hugs, Donna ❣ Kitty 🐾
Keep praying for peace and clarity - it will come. I am very seriously ill and when I am unsure about going through with a medical decision it usually means a forced decision is not the right one. Take care
thanks to your videos and strength I had the courage to tell my doctor that I was tired of not walking. I'm 24 and up until a month ago I couldn't walk unassisted and without numbing pain in my legs because of my hip problems. I have since started medical marijuana and I can walk again with only mild discomfort and no cane or wheelchair.
im always amazed that harlow seems to know what commands youre going to give her before you say them! hang in there, im sure you will find a solution to the feeding tube dilemma soon
Harlow knows often what Jacquie will ask because for things like her tasks before eating she almost always does, spin, namastay and often speak. My dog was like that as well. Before giving Max a treat he would always be doing a wave. Before that it was always a roll over. Usually whatever trick he was learning at that time, because I usually asked for it first. Earlier this week Harlow did a spin for her food before Jacquie even asked for it. Because of routine. That is partly what makes dogs good for training.
I love you Jaquie! Praying for you and have been thinking about you a lot lately! I know you will get to figure out which tube is the best option for you!
You and your doctor's will come to the right decision for you and your needs. Please just take care of yourself and i will keep you in my thoughts and prayers that everything will sort itself out. Love your family and videos. I am also going through rough times with health problems so I can understand how you feel about it. Take care and God bless you all lot's of love from me kelli xxxxxx
You are in my thoughts and prayers♡ You are right, talking with the surgeon will help you decide what is best for you!♡ I have a seperate G and J tube...I don't regret the decision...I had a complication with healing and I had to have a second surgery to fix and replace the tubes...after my second surgery...the pathology report came back showing that my small intestine doesn't get enough blood flow...so there was a lot of worry if it was going to heal and if I could keep the tube...happily, it has healed and it works beautifully....I am thrilled to report!♡ I am here if you want to contact me and ask specific questions. You are amazing and I really appreciate your videos ♡ Big Hugs ♡
Jaquie, being unsure about a big decision as that is completely normal! These are alterations to your body, it is ok to take time to decide what is better for YOU^^ Take your time and decide with peace, information and heart!
I don't have a feeding tube, but, I can totally relate to what you are going through. I am only 24, and I have to deal with urinary incontinence. When I first got diagnosed, I was like, "No way! That's an old lady problem! I can't have that!" For the longest time, I refused to wear any pads or disposable underwear. But then, one day, I completely soaked my pants at work and was sent home to change when I didn't make it to the bathroom on time. I thought to myself, "It's okay to disagree with having urinary incontinence at my age, and, at the same time, I need to address it." That started me on the road to acceptance. Now, I wear disposable underwear comfortably, and I am getting all the help I need.
Keep moving forward Jaquie! Remember that you can take a break like last time if you need to! I don't know if you have already thought about it but for splitting your tubes, it would probably help relieve your overall stress due to not needing to worry about kinks constantly. Just a thought!
Everything needs to happen in its own time. Uncertainty can be scary, but your willingness to let God take control of the situation will take you far. Praying for you all.
I'm praying for you Jaquie. I'm so sorry you keep having so many health issues, but I know that God has reasons for everything we go through. You are an inspiration and your vlog is a blessing to quite a few people. God bless you and your family!
i hope you know that i am thinking of you jacquie and that i know these are never easy decisions to make. Sometimes there's not a right decision or an easy decision sometimes there is just the one you make with qualified medical advice and your intution and you deal with the good and the difficult things that that decision has given you.
Girl, I give you props. If it we're me, I'd separate them in a heartbeat. I would rather deal with taking care of two stomas then needing to go to the hospital and dealing with the weakness when it decides to kink. I know you'll make the right decision for you and I'm glad you're deciding for yourself and not letting others simply pressure you into a decision though. It'll all work out in the end, I'm sure. Whatever decision you make, us fans are here for you in whatever way we can be.
I’m sorry this happened again/: I know you said it’s inevitable but that certainly doesn’t make it any easier.. I’ll keep praying for yah! Especially that you’ll feel at peace with whatever decision seems to be the best option for your situation & what will help give you relief in the future. Love you!!❤️
Hang in there! Hopefully more information from your doctors will put your mind at ease regarding what decision you choose to go forward with. I know I've felt the same way you are describing with some of my treatment options and eventually things do get worked out. Praying for you and hoping for the best!
Also in my last comment I forgot to tell you, you and your doctors know the right decision to make and I hope the decisions you make are the best and will hopefully help you get better and help you get the most of life that everyone deserves ❤️
My gastroparesis causes a lot of nausea, too. I don't know if this tip will help anyone on here, but I have found that sucking on sugar-free cough drops (menthol flavor) helps with my nausea. I hope it will help someone here as well.
Hey Jaquie, just wanted you to know I'm with you in spirit, supporting you and cheering you on through all your battles. Also enjoying watching your good times. Love ya! Harlow and Judd too. 👍👊☝️🙏✌️🤞
I *love* your new backpack. Its just so pretty. Personally I would go for the two tubes because I hate seeing the state you deteriorate into when your tube kinks. But that's just me. A concerned subscriber. In the end its not my decision nor my body. Although I am pretty indecisive and stubborn. ;) TBH. I have many probs like you and one of em is food. I feel ya on the food probs. Trying to figure out what to eat to not knowing if it'll agree with ya etc. Lets hope Thurs comes sooner for ya. :)
So sorry you're going through the feeding tube kink again. At least it won't take too long to get it fixed this time so you hopefully won't lose weight. Take care hun and stay strong. Love ya both and Harlow too, of course.
Stay strong Jaquie, I just got back from the doctor. I have MS (Multipal Sclerosis) and my doctor did an EKG today and my heart is starting be effected and is beating twice sometimes. So I have to let her know if I start to feeling the extra beat.
I had similar issues. I had got mine split and its probably one of the best decision i have made. Yes at times it can be more work but in the long run it pays off. I also love your videos. Im in the middle of training my service dog. If she has issues responding to something i try to find a differnt way to show her. I also am training her with hand signals. She is an 11 month old pitbull. Right now she has a mini "vaca" . She had her 2nd tumor removed, still running some training thru that doesnt require much
Hey Jaquie! I hope you can find clarity and peace about your decision. I believe with your support system, your surgeon consult, and your GI, that you will come to a decision! Good luck to you. Keep on keeping on! Thursday is coming!
I really hope you can come to the best decision and one you are comfortable with. I am not a chronic illness warrior. I am diabetic, and I have some complications from it, but nothing compared to you or others. I just love watching you, Judd and of course Harlow! If you haven't already, look at headboard ideas on Pinterest. Some cheap and easy ways to go. :)
Yay your procedure is only a couple days away unlike last time where it was a week away. Don't forget to ask to keep your old gj button! Prayers are being prayed for your confusiong tube situation!❤❤
Feel free to ignore if this is too personal but I've always wondered how folks deal with menstrual cycles while chronically ill. Does your EDS or POTS or any other illness affect it at all? I hope you find peace with this difficult decision soon. God is good and will give us answers when we seek them.
I hope you come to a good decision about your feeding tube if you ever need someone to talk to or vent to I’m here ❤️ feeding tubes are frustrating I have a gtube and company that I get my formula through is being a pain and not getting me my formula that I need
If we can read her face on wether she feels good or not Harlow probably knows something is up. May not know it's her feeding tube. Depending on the person you may be able to read their face to know if they feel really bad. Mine gets red so my family and a couple friends know when we should just lay down for a minute. (Rn I am diagnosed with pots and others)
Ruby And Pets Animals are amazing at picking up when their owners don‘t feel well. One of my bunnies for example always sits right in front of my bed when i am not feeling well. So Harlow is propably feeling that something is wrong.
Shelbi Jackson Yeah, I was thinking she could sense the stress or something like that or even that she’s not feeling well. And I hope you get better/ feel well soon!
I really hope you'll find peace with the decision you take for your feeding tube and wish you a lot of rest and energy for the next few days! I'm really sorry you have to deal with this and keep going!
Kate farms did awesome to send you Oral nutrition! Even if/ when the terrible stuff comes hopefully it won't set you back too much. You're right, sometimes finding peace in a decision isn't easy, especially when you can't ignore something like not healing well or quickly will happen.❤️
Having two feeding tubes means you can wear two tubie-pads a day!
Harmony Scheidt that’s what I️ said before I️ read this 😂
I had the same exact thought!
Jaquie, thanks to your wonderful attitude towards health concerns I was inspired to go back to my doctor again to have my health concerns addressed. It turns out that I was feeling so sick partly due to an interaction between two of my meds that was affecting my heart. I am starting to feel a lot better.It's all because you gave methe courage! Thankyou!!!
Whoa, Vicky, that is scary that you had an interaction. I would have hoped that if not your doctor, then your pharmacist would have caught that. Either way, I'm glad no real harm was done and that you are starting to feel better. Take care!!!
Which meds?
I too have some chronic illness issues. Watching your channel inspires me to keep going and keep up with my treatments and mental health care. Few people realize that taking care of yourself also means maintaining your mental well being as well. Good luck with your decision and hope you feel better soon.
I’m glad you’re waiting to make a confident decision and not rush into it. Your ability to self advocate for yourself is so awesome, yet you still value the opinions of your loved ones. Keep fighting! I know the right option will be here soon for you
You handle all these issues with Grace and determination to get through it no matter what. You are a very inspiring individual. Thank you for sharing your life with us.
God will guide you, Sweetheart. My daughter and I are praying for you!
I love the fast music when doing your IV fluids. Especially when it synched up and you flipped the two caps off the vitamin bottles. Good luck my dear. And stretchy Harlow!!
You have proven time and again how strong you are, so do what makes you happy, gives you a better quality of life and a better experience. You are in the thoughts of this warrior.
I had a GJ placed in August of 2012 and had them separated in July of 2014. I have gastroparesis and full small bowel and colon dysmotiloty as well. I started TPN in the fall of 2013 after I had tube feeding formula backing up into my stomach from my J portion of my GJ even when it was in place and at a rate of 10ml/h. We hopped by placing a Mickey J tube with the long tail on the end (can be as long as 45cm tail) we' get far enoughh into my small bowel to prevent reverse motility and allow me to wean off TPN. I was able to get down to 5 nights of TPN for awhile. The surgery for the J tube wasn't horrible after I got over the ileus (took a week). They placed low profile tube right away so I ddn't have a long tube right off which was fabulous.
I am so impressed with how you are praying through this until you have peace with how to proceed. Far too often I allow others to persuade me into actions that are not necessarily best for me. Thank you for sharing your process of making the best choice for you. I'm keeping you, your family, and your medical team in my prayers as you continue on this adventure.
I'm sorry your having such a hard time with your feeding tube :( I have to agree that YOU need to be at peace with your decision, and I will keep you in my prayers that you come to peace soon with what you need/want to do, Your an amazing woman and I for one am thankful for all that you share with us! Even if someone is not chronically ill you provide so much information, and show how much compassion means especially when you have an invisible illness so thanks again to you and your family I love your vlogs 💖😚❤🎀
If you continue with the gj placement ask for a back up g button. You can take out the gj and replace it with the g so at least you can vent. Since its a simple g placement you don't need sedation.
We have a back up g for my son's gj for emergencies like kinking
This is such a helpful idea. I would not have thought of this (I don't have a tube, but am learning). If it isn't a good idea for Jaquie for whatever reason, you may very well have helped someone else with your idea.
Sending love and praying that your find peace in whatever decision you make. We are here for you always. If it wasn't for you I would have never gotten officially dxd with hEDS from mayo clinic. Everything you do in sharing your story and spreading awareness, you're truly an inspiration ♡
I have no idea what you are going through, but you inspired me to get a service dog, and helped teach me so many different ways my STiD, Holly, can help me with my disabilities. Thank you for all of your help, even if you didn't know you helped change my life for the better, and helped me keep moving forward.
Jaquie, I personally do not suffer from any chronic illnesses, but your vlogs inspire me to keep my head held high no matter what comes my way. Watching Harlow being the adorable pup she is always makes me smile. Whatever decision you make regarding your tube, I hope it will benefit you.
Praying for you Jaquie! You have so much courage and are such an inspiration to so many! I’ve been following your blog and can’t thank you enough for your positivity and for sharing your story. I’ve been legally blind my entire life, and have been dealing with a few chronic illnesses since 2011.
I always find that writing out worries/issues with any large decision helps immensely. I know that many people find writing therapeutic. It's cool that you do this too! I don't feel so weird now :) Also, at my school we started giving out gratitude journals, where you spend a few minutes a day writing down the little things that you're grateful for. It actually has been proven to help with sleep, which is interesting! I just thought that it was a cool idea. I am so thankful for your videos, and the community that they provide. Everyone in the comments is lovely and supportive, which is so refreshing!
Maybe make a pros/cons lists for keeping a gj and separating. Might help make the decision easier? Just remind yourself you WILL make the right decision and if the one you choose doesn't work you can always go back. It's going to get better. You will get past this. Just keep fighting!!!
It's great your care team is able to work with you so quickly and efficiently when things come up! Hopefully whatever option you choose ends up making your life easier in the long term.
Praying for you sweet girl. I'm battling major health issues right now & I totally understand having peace with your decision. Take your time & listen to the Lord, He will direct you. Praying for clarity for you & your medical team. Lord Bless you.
I hope you are feeling better soon too.
I think you're definitely right about having a better perspective once you have the surgical consult. Having your questions and concerns answered by the surgeon is the best way to gain peace through knowledge.
So lucky you have so much support thru all your illness issues....it’s very tough to go thru crap mostly on your own and having to financially fully support yourself. Bless your family!
Jaquie, you’ll know what to do when the time is right. I get that you must feel very frustrated and unsure about all of this. However, I’m sure you’ll make a good decision. I wish you all the best of luck with everything that’s going on. Hope you’ll feel better soon. You really inspire me to make the most of each day, thank you for that.
Decisions are definitely hard, and I think that you’re approaching it in the best way possible. You’ve got this. I keep pushing through health and chronic pain issues because you inspire me. Thank you. Positive thoughts your way ❤️
Hi Jaquie!
I understand your family and doctors wants but I’m glad you’re still deciding what you want. It’s your body after all. I’m not one to comment all the time but I’ve been watching since just before you got your feeding tube. You are very inspiring. To see you fight every day is so inspirational. Thank you for all you do
For survival situations, I've always heard the "3-3-3" rule is a good one to follow. you can live 3 minutes without oxygen, 3 days without water and 3 weeks without food. These aren't hard and fast rules, for example, in a hot dry climate the 3 days without water is not realistic. In Death Valley in the summer hou can die in HOURS without water, which is why they say to take 1 gallon per person per day even in the car, because if you break down it may take more than an hour to get help. You'll need that water to survive.
You are absolutely right to do what you have to do, in this case meet with your GI doc and have the consult, to have peace and confidence in your decision. Your family is coming from a place of love and a desire to see you have an easier time with things and less frustration. We all love ya, Jacquie and whatever you need from us, whether it is support, suggestions or just a forum to get your information out there, we are all here because we want to be. Because we care. Take it easy over the next few days and I'll put in a good word for you with the Big Guy tonight when I say my prayers! xo Heather🇨🇦
I'm praying for you! Thank you for being such a kind soul and giving some of us the strength to keep going!!!
Keep hanging in there girl. It's all worth the struggle to make things best for your health! You've got family and God looking out for you.
You’re so incredibly inspiring even when you’re so human and frustrated coz the kinked feeding tube honestly just sucks. But you’ll pull through as always. Hoping you keep well and get better ASAP! Praying for you and sending you lots of love ❤️
We love you guys! You’re so strong. And you will figure this feeding tube dilemma out! Just another small bump in the road. We’re all rooting for you ❤️
I hope you're feeding tube issues resolve themselves quickly. I can feel how frustrated you are and I can understand why and I just want you to know that I'm rooting for you and sending you prayers and hopefully things will turn out better.
You are a warrior. Thanks for sharing your life
Go for it!
It is worth the "risk".
Having two tubes will eventually give you so much more will to live and go on.
We all know how no nutrition is making you more sick than you already are!
You take SUCH GOOD CARE of your current stoma and I'm SURE you are able to take care of another stoma too!
I can understand how you feel, but I also respect your choice. We all think you can do it!
You are such a strong woman to all of us. You give us hope, you show us what dedication means, and you show us what love means!
Thank you for making these videos, Thank you for giving me strength and a will to live!
Tools to have open freedom. That's what you've taught me. I started watching you this year. My knees buckle, my body spasms, and my PTSD is so bad that at times I lose feeling to the world (literally in a ghost state). I used to avoid my cane so much that I would have to sit several times to just make a block. I used to avoid needing a walker so bad that I would invite crawl from one room to another. I used to avoid pain medicine so much, that I would be unable to move with painful tears (the ones that just fall, but not really emotional). Growing up, crying out or showing any pain was attacked by my mother, saying I was too young to hurt. But she was blind to the fact that anyone could feel besides her. I tell you this to maybe help you. I use the walker, I use my cane, and I'm more open to pain medicine when it's hard to move. I let myself take days off from chores, and I let myself rest. I'm finally beginning to be okay because instead of those things that scare me or originally made me feel like a failure, are now tools for my freedom. With your kinking, remember to listen to what would make you feel free, and even if it is scary or hard, it's another tool and another chance for a bit more freedom. I support you either way, and will be here with you (even though you don't really know me hahahahahaha....) because you supported me without even knowing it. (I'm also trying to figure out a way to go to the doctors again, fight for them to listen this time.)
I also have EDS type 3. and i am a mom to a handsome little boy named Hunter he is 2 years old. and we watch your videos all the time together. just wanted to let u know we are thinking about you and we are sending prayers your way get better soon. and give Harlow loves for me. We love you
Jaquie, you forgot another pro: you can use 2 pretty matching designs for your feeding tube pads 😉. Whatever you decide, you will always have your family with you.
I’m praying for God to give you peace in the tube situation. I myself was in the position you were in and I had no choice but to separate my tubes. It’s hard and rough but in the end it ended up easier for me personally. Harlow is adorable and keeps you great company and is a great service dog. She’s amazing. Keep on fighting and Praying on this. I will have you in continuous prayers.
I hope everything goes well and I hope that you can get the help you need with feeding tube issues soon
Glad you don’t have to wait too long. Hope that this one will endure a lot longer then your current one. Stay strong fellow POTSie
Much luck with your tube Exchange. Kitty and I will be praying for you. We'll be adding you to our prayer list at church. One can't have too many prayers. Can't wait to hear how things are going. Best wishes and hugs,
Donna ❣Kitty 🐾
I hope you're resting easy... I've come to look for advice from your videos, you always knew what to say, and have always helped me through my own illnesses. Wish i could've heard your words in real time, i could use them right now. Always here with us❤
I get how big and scary the whole operation is, and I definitely understand and support you need to be sure 100% that it’s the right choice for you.
I also get why your loved ones feel you should get it, because I feel the same way: it’s scary to see you go without nutrition for several days when your body needs it so desperately to keep on fighting all of your chronic illnesses. And I’m also pretty sure it’s even scarier for them because they witness all of it in real life.
It’s also so frequent... there must be a solution, wether it’s two feeding tubes or something else, that makes it more manageable. Because no in itself you being off feeds for three days isn’t life threatening, but I feel it gets to be an urgent situation when it happens almost once a month and messes with your body this badly :/
In any event, I have no doubt you will find a way to deal with this!
My thoughts and love to all of you
It's hard for us all to not get involved at this point. You all are like family to all of us on here. In our thoughts daily! Even my mom asks how you are today! We all worry about you and are just trying to toss ideas to you. You never know when there may be an ah-ha moment that strikes that may be that "thing" you were waiting for to click and give you the answer! Believe me.. I'm as stubborn as they come when it comes to my spina bifida and other medical stuff I deal with. But it's still nice to know, ppl are trying to help even when they have no clue! 😂😂 then i realize.. it's just out of love. Thanks for letting us peek into your lives! No matter what, you have to feel good about what you decide. You got this!
I totally understand what you mean about needing to make the decision for yourself. I did the same in making my port decision and had some people telling me to do it and some not. I ended up making the right decision for me. I hope your appointment helps you make one 🤞 was really hoping they would get you in before Thursday, but then I thought maybe he had to order the button again?
Much love
I'm sorry you're having to continue to deal with this. I know that eventually you'll come to the best conclusion for your body and your journey. I hope things work out so you can have some nice, relaxing time with your family this holiday season without any tube issues. Much love from NY!
Good luck with your feeding tube troubles Jaquie!! I know you'll make the right decision!! You can do it!! Thank you for sharing your story and spreading awareness!!
An old door with interesting features painted an orange/terracotta color would look lovely as a headboard. You seem attracted to blues/oranges, love the backpack. And a throw pillow with different texture will add interest. As for making decisions I make sure I have all the information then sit with it. Mull it over, listen to advice but ultimately go with my gut. I do this with my health decisions and it's how I parent too. If I'm at peace with the answer then it usually is the right thing for you. You have a future as an educator. You are clear, concise and very well spoken. An a positive role model for those of us with the invisible health issues. I have no worries you'll work this out just fine. Xox
Hope you are able to make a decision with some peace in it at the same time. Over the course of 2016 to 2017 I had constant intense day and night lower abdomen pain. As I had uterine fibroids and rare Turners Syndrome that makes it difficult to have children, the logical step was a hysterectomy. Every time I got prepared for the surgery I cried and felt rotten emotionally. A bunch of m.d.s and friends thought I was nuts for not doing it. I finally went and spoke to my Turner Syndrome specialist and she suggested to have a hysteroscopy to remove a new polyp (similar to what my obgyn offered) and a diagnostic laparoscopy to have the surgeon see what was happening without Uterus removal. When I woke up after my surgery in August my pain was 100 percent gone! I felt bruised but fantastic. Of course I had a few weeks recovery, but this far in my journey it was the best decision for myself. The best you can do, is what you are happy and comfortable with. In the end it is in gods hands and it will be ok. Sending love and good vibes. Kate
I'm happy it worked out for you! ♥
HannahOfferdahl Thanks Hannah! Sending you a hug.
Continued prayers for you. Praying for guidance and HIS wisdom in this current situation. Keep fighting. You’re such a great inspiration and encouragement to so many!
Much luck with your tube issues. You know whats best for you. Kitty and I will be praying for you. Will have you on our prayer list at church. One can't have to many prayers. Lol Best wishes & Hugs, Donna ❣ Kitty 🐾
Keep praying for peace and clarity - it will come. I am very seriously ill and when I am unsure about going through with a medical decision it usually means a forced decision is not the right one. Take care
Prayers for a confident decision.
thanks to your videos and strength I had the courage to tell my doctor that I was tired of not walking. I'm 24 and up until a month ago I couldn't walk unassisted and without numbing pain in my legs because of my hip problems. I have since started medical marijuana and I can walk again with only mild discomfort and no cane or wheelchair.
im always amazed that harlow seems to know what commands youre going to give her before you say them!
hang in there, im sure you will find a solution to the feeding tube dilemma soon
Harlow knows often what Jacquie will ask because for things like her tasks before eating she almost always does, spin, namastay and often speak. My dog was like that as well. Before giving Max a treat he would always be doing a wave. Before that it was always a roll over. Usually whatever trick he was learning at that time, because I usually asked for it first. Earlier this week Harlow did a spin for her food before Jacquie even asked for it. Because of routine. That is partly what makes dogs good for training.
I whole heartedly believe you need to feel its the right path God has chosen for you in this decision. You are an amazing lady
I love you Jaquie! Praying for you and have been thinking about you a lot lately! I know you will get to figure out which tube is the best option for you!
You and your doctor's will come to the right decision for you and your needs. Please just take care of yourself and i will keep you in my thoughts and prayers that everything will sort itself out. Love your family and videos. I am also going through rough times with health problems so I can understand how you feel about it. Take care and God bless you all lot's of love from me kelli xxxxxx
God bless you and your family have a wonderful holidays....you give all of us chronic pain Warriors great spirits and hope!
Try something different texturally for the decorate pillow, like a silky pattern on a tube pillow :D Your bed is gonna look so pretty.
You are in my thoughts and prayers♡ You are right, talking with the surgeon will help you decide what is best for you!♡ I have a seperate G and J tube...I don't regret the decision...I had a complication with healing and I had to have a second surgery to fix and replace the tubes...after my second surgery...the pathology report came back showing that my small intestine doesn't get enough blood flow...so there was a lot of worry if it was going to heal and if I could keep the tube...happily, it has healed and it works beautifully....I am thrilled to report!♡ I am here if you want to contact me and ask specific questions. You are amazing and I really appreciate your videos ♡ Big Hugs ♡
Jaquie, being unsure about a big decision as that is completely normal! These are alterations to your body, it is ok to take time to decide what is better for YOU^^ Take your time and decide with peace, information and heart!
Take peace in the fact that you will make the right decision, because you will make it. It just takes time.
I don't have a feeding tube, but, I can totally relate to what you are going through. I am only 24, and I have to deal with urinary incontinence. When I first got diagnosed, I was like, "No way! That's an old lady problem! I can't have that!" For the longest time, I refused to wear any pads or disposable underwear. But then, one day, I completely soaked my pants at work and was sent home to change when I didn't make it to the bathroom on time. I thought to myself, "It's okay to disagree with having urinary incontinence at my age, and, at the same time, I need to address it." That started me on the road to acceptance. Now, I wear disposable underwear comfortably, and I am getting all the help I need.
Keep moving forward Jaquie! Remember that you can take a break like last time if you need to! I don't know if you have already thought about it but for splitting your tubes, it would probably help relieve your overall stress due to not needing to worry about kinks constantly. Just a thought!
Everything needs to happen in its own time. Uncertainty can be scary, but your willingness to let God take control of the situation will take you far. Praying for you all.
I'm praying for you Jaquie. I'm so sorry you keep having so many health issues, but I know that God has reasons for everything we go through. You are an inspiration and your vlog is a blessing to quite a few people. God bless you and your family!
We love you Jaquie, and I hope that you can make a descision that you are at peace with!
You are awesome. Things get you down sometimes but most of the time you are a strong trooper. Praying for you to make the right decision for you.
I will definitely be praying for you. What ever decision you make regarding your feeding tube I’m sure it will all work it’s self out. ❤️
Oh, is that a new backpack or am I late in noticing? :O It's gorgeous! I love the pattern!
i hope you know that i am thinking of you jacquie and that i know these are never easy decisions to make. Sometimes there's not a right decision or an easy decision sometimes there is just the one you make with qualified medical advice and your intution and you deal with the good and the difficult things that that decision has given you.
Praying for you and your family for having to deal with this again so soon. Praying that you find peace with which ever option works best for you.
Girl, I give you props. If it we're me, I'd separate them in a heartbeat. I would rather deal with taking care of two stomas then needing to go to the hospital and dealing with the weakness when it decides to kink. I know you'll make the right decision for you and I'm glad you're deciding for yourself and not letting others simply pressure you into a decision though. It'll all work out in the end, I'm sure. Whatever decision you make, us fans are here for you in whatever way we can be.
I’m sorry this happened again/:
I know you said it’s inevitable but that certainly doesn’t make it any easier..
I’ll keep praying for yah! Especially that you’ll feel at peace with whatever decision seems to be the best option for your situation & what will help give you relief in the future.
Love you!!❤️
Hang in there! Hopefully more information from your doctors will put your mind at ease regarding what decision you choose to go forward with. I know I've felt the same way you are describing with some of my treatment options and eventually things do get worked out. Praying for you and hoping for the best!
Also in my last comment I forgot to tell you, you and your doctors know the right decision to make and I hope the decisions you make are the best and will hopefully help you get better and help you get the most of life that everyone deserves ❤️
My gastroparesis causes a lot of nausea, too. I don't know if this tip will help anyone on here, but I have found that sucking on sugar-free cough drops (menthol flavor) helps with my nausea. I hope it will help someone here as well.
Hey Jaquie, just wanted you to know I'm with you in spirit, supporting you and cheering you on through all your battles. Also enjoying watching your good times. Love ya! Harlow and Judd too. 👍👊☝️🙏✌️🤞
I *love* your new backpack. Its just so pretty.
Personally I would go for the two tubes because I hate seeing the state you deteriorate into when your tube kinks. But that's just me. A concerned subscriber. In the end its not my decision nor my body. Although I am pretty indecisive and stubborn. ;) TBH. I have many probs like you and one of em is food. I feel ya on the food probs. Trying to figure out what to eat to not knowing if it'll agree with ya etc. Lets hope Thurs comes sooner for ya. :)
So sorry you're going through the feeding tube kink again. At least it won't take too long to get it fixed this time so you hopefully won't lose weight. Take care hun and stay strong. Love ya both and Harlow too, of course.
Sending you all love and concern. You are brave and doing good by sharing your journey
Stay strong Jaquie, I just got back from the doctor. I have MS (Multipal Sclerosis) and my doctor did an EKG today and my heart is starting be effected and is beating twice sometimes. So I have to let her know if I start to feeling the extra beat.
I had similar issues. I had got mine split and its probably one of the best decision i have made. Yes at times it can be more work but in the long run it pays off. I also love your videos. Im in the middle of training my service dog. If she has issues responding to something i try to find a differnt way to show her. I also am training her with hand signals. She is an 11 month old pitbull. Right now she has a mini "vaca" . She had her 2nd tumor removed, still running some training thru that doesnt require much
Praying for peace and confidence with your decisions. Sending you love and prayers from Texas.
Hey Jaquie! I hope you can find clarity and peace about your decision. I believe with your support system, your surgeon consult, and your GI, that you will come to a decision! Good luck to you. Keep on keeping on! Thursday is coming!
I really hope you can come to the best decision and one you are comfortable with. I am not a chronic illness warrior. I am diabetic, and I have some complications from it, but nothing compared to you or others. I just love watching you, Judd and of course Harlow! If you haven't already, look at headboard ideas on Pinterest. Some cheap and easy ways to go. :)
It’s hard when you’re on a bit of a time crunch, but I hope that you’re able to find peace in whatever route you decide to take. Hang in there!
Love you hun, no advice one way or the other from me, just praying God gives you peace one way or the other. We stand with you! ♡♡
Yay your procedure is only a couple days away unlike last time where it was a week away. Don't forget to ask to keep your old gj button! Prayers are being prayed for your confusiong tube situation!❤❤
Feel free to ignore if this is too personal but I've always wondered how folks deal with menstrual cycles while chronically ill. Does your EDS or POTS or any other illness affect it at all?
I hope you find peace with this difficult decision soon. God is good and will give us answers when we seek them.
I hope you come to a good decision about your feeding tube if you ever need someone to talk to or vent to I’m here ❤️ feeding tubes are frustrating I have a gtube and company that I get my formula through is being a pain and not getting me my formula that I need
I have a question does Harlow seem concerned or like she knows your feeding tube is messed up?
Ruby And Pets I think she picks up on her stress.
If we can read her face on wether she feels good or not Harlow probably knows something is up. May not know it's her feeding tube. Depending on the person you may be able to read their face to know if they feel really bad. Mine gets red so my family and a couple friends know when we should just lay down for a minute. (Rn I am diagnosed with pots and others)
Ruby And Pets
Animals are amazing at picking up when their owners don‘t feel well. One of my bunnies for example always sits right in front of my bed when i am not feeling well. So Harlow is propably feeling that something is wrong.
Disney Gamer Yeah, that’s what I was thinking.
Shelbi Jackson Yeah, I was thinking she could sense the stress or something like that or even that she’s not feeling well. And I hope you get better/ feel well soon!
I really hope you'll find peace with the decision you take for your feeding tube and wish you a lot of rest and energy for the next few days! I'm really sorry you have to deal with this and keep going!
Kate farms did awesome to send you Oral nutrition! Even if/ when the terrible stuff comes hopefully it won't set you back too much. You're right, sometimes finding peace in a decision isn't easy, especially when you can't ignore something like not healing well or quickly will happen.❤️
Keep your head up, Jaquie!! 💞 love you and Harlow! 🐾
I’m glad they could get you in sooner this time. Hopefully you won’t get too awfully drained before the replacement. ❤️
Prayers for you in making a decision that will be right and the you are comfortable with. God bless Jaquie.
I’m praying for you Jaquie!!!🙏🏻🙏🏻🙏🏻
You keep working at it. I'm dealing with a severe infection right now, so I watch your videos for inspiration. I'm considering doing a vlog as well.
Hippos little stretch at the beginning is the video was absolutely adorable
Sounds like from the list of pros and cons you listed you pretty much decided to go ahead with the splitting of the tubes! Go for it!!