13:00 You should write a letter about what happened and how the hospital staff responded to it. They get so many complaint letters, they love getting positive feedback, and knowing how they get things right. I had a doctor's appointment once and getting there isn't easy for me. I have to take two buses and it takes about 1.5 hours to get there. Once I got there I was told that the appointment had been canceled. They were suppose to have called me to let me know, but somehow the ball got dropped. The staff I dealt with were really nice, even though I wasn't happy about the wasted trip, they got everything set up. I wrote a letter to the manager explaining what happened and what was done to resolve things. AND I named names. The manager called me to get more information and thanked me for the kind letter.
Awe thanks! I felt silly for being there because it was not a huge emergency. I am hoping that imaging can be done somewhere more practical in the future.
I wish hospitals had an "emergency" department for true emergencies and an "urgent care" department for urgent things that are not emergencies. Outpatient urgent care centers often don't have the same resources as the ER, so it would be awesome if all hospitals had one built in.
True! My local ER has something called a "Super Track" where non-life threatening emergencies go and dividing us like that helps things move faster for everyone. I had to go there one day when my tube clogged and because they divide the urgent cases from emergent cases, we were in and out! The hospital my GI practices at is not the same as my local one.
In the UK we have A&E (accident and emergency) and then also have Minor Injuries units. They handle things like sprains, broken bones, minor burns, things like that. Basically, if it needs seeing to but isn't potentially life-threatening. www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/Minorinjuriesunit.aspx They're really great!
You are an inspiration in positivity while facing chronic illness,I also have GP and have FM as well. I'm trying to be more positive and watching you "on your adventure" makes me feel like there are those who understand what it's like and makes it a little less lonely. I started watching you a few months ago and now I also watch The Raw Life, I love you guys!
Your patience and understanding is so inspiring!! Most people would have been furious for being overlooked in the ER but you are always so graceful under difficult circumstances. Thank you so much for sharing your adventures.
Totally understand disliking ER. Once waited 10hrs with my Mom for mild stroke. I had to finally get firm to get attention. Cute mask and pad! Feel better!
i thought things like that only happen in Russia where nobody cares about you or your rights until you go agressive :D sorry you had to go through this waiting :(
Stephanie Sposato wrong? It's completely normal where I live (one of EU countries). We usually wait 10-14 hrs to get help on ER. Once I was waiting for 12 hours with severe asthma attack and 10 hours with a migraine attack.
Omg 'see you next time' is not something you should say to someone leaving the ER 😂 Good job Harlow though! Give her lots of kisses and hugs and praise for being so well behaved
Hippo is awesome! My Hanna banana stopped me last night on the way to bed to do her sniff check to make sure I took all my inhalers. She was right I hadn't done my nasal inhalers yet. That was on my next to do before hopping in bed. But it was very good to see her practicing her skills she picked up on naturally. Then we played a little fetch with her favorite stuffy a little dog. I will have to record her one day.
Melissa Rennells ...wow! That's impressive. I've been watching a bunch of videos with service dogs to see the many ways they can be helpful. I'm always amazed at the skills they can be taught, and those they pick up themselves naturally. It's hard for me to understand how they grasp certain tasks, like knowing if you've done your entire bedtime medical routine. Amazing!
Turns out she was alerting to a infection. I woke yesterday coughing up icky stuff and a fever. I felt so icky last night I laid down in bed early to just rest. She laid with her head on my hand while I dozed off and on. She the tried cheering bringing me her stuffy dog for a little fetch. I couldn't help laughing.
Praying you start to feel better soon hun. So sorry they dropped the ball with reading your imaging and it was a bad experience. Lots of love being sent your way. And so glad Harlow did so well at the E.R. She really is a great pup, glad she is getting a day off too. Have a great day hun!
I had a similar experience on Thursday regarding my port needing cathflo for a fibrin sheath. Was told to go to ER by my HH nurse and felt like it wasnt 'emergency enough' because I could still infuse. Turns out I could have gone to an outpatient clinic. Oi. Long day. So glad you have Harlow to help you and that there are no kinks :)
omg eight hours...the most ive been at the ER is like five...and i get impatient when i have to wait like 30-45 minutes for my GI appointments. it's so good that you're so understanding and patient. a lot of other people probably would've thrown a fit. i hope you can figure out the cause of these pains too!
You have a great attitude. It's nice to see people who understand that yelling and swearing and getting stressed doesn't accomplish anything. In fact, it makes things worse.
Jacquie, your ability to put events in proper perspective show maturity way beyond your years. Most people young or not would have have stronger anger reactions to being overlooked for so long. You were able to see this for what it was and move on. An inconvenience and major irritation but not a life threatening event. Kudos to you! (And your mom)
You and Harlow are amazing, being able to go through life being so positive when your in pain almost constantly. It's just such an inspiration to me and probably countless others. I hope you have a better day tomorrow. Would love to see some of Harlow on her day off 😊🐶.
Caroline (my 21 yo daughter who has GP, EDS, POTS, MCAS, Fibro) and I spent 6 hours in the ER last night. She had an allergic reaction to her Levisin, which she has been taking for a year to help with dry heaves. Things were going well, the doctor was great, asked what our protocol was and followed it. Then she reacted to one of the protocol meds (Pepcid) and things got worse. She had tremors (could be undiagnosed seizures), and lost the ability to pick up her arms and legs. They gave her a new steroid for her because she reacts to Solumedrol as well. Thanks for sharing your adventures. The life of a spoonie is never dull, that's for sure. I understand the frustration, and your ability to show grace. The doctor didn't intentionally forget to look at your films. I'm sure you have met enough doctors who aren't so understanding of chronic illness and are just rude. It's easier to forgive someone's mistakes than to deal with someone intentionally being unkind.
As a nurse I highly appreciate people who understand that things can slip through the crack sometimes. Being behind the scenes is totally different from being the patient. We try to do things perfectly but there are times when something comes up and we get distracted and to use our attention to another patient who is critically ill. We aren't perfect and doctors aren't perfect either.
I totally get that, I have been sick long enough to realize that no matter what your profession is, human error is a thing! I was really appreciative that the nurses apologized when they found the mistake. All I ask is for compassion and ethical care (:
I want to puppynap Harlow, but I think you need her more than I do. She's so sweet, clam and adorable and she's not even what I would consider an adult dog yet. You got lucky when you found her!
I've found if I size up one size on the Vogmask, it helps eliminate the pinch. I've got RA, and have been rocking them for a while now. I've found the size medium fits the ears better, even though a size small fits my face better.
Here in CA when my mom's doctor wants her to get X-rays she puts in the order and then I can take my mom to the hospital at our earliest convenience. We go to the radiology department check in and get in line. It's still first come first serve. But since everyone in the line is getting some form of imaging the line moves fast. Same goes for blood work and quick-care (when someone has a minor issue like a scrapped knee or cold). The emergency department can then focus on emergencies. Which is how I think it should be. Clearly this is a hospital logistics problem.
Im a surgical nurse, I think you should....get lubrication, disinflate balloon and quickly take out the port n rub lubrication on balloon area and re-insert the port n the inflate again. That tends to happen....raw skin on inside rubbing on the balloon.....what we do is lubricate it.
Sorry you went thru that experience with the hospital.Unfortunately at 60yrs old i have seen life threatening mistakes with family members.My Mom used to always say you needed a family member with you when you went to the hospital to loik out for you if you were unable to speak for yourself.The last time i was with my handicapped sister in the hospital,her blood pressure was dropping dangerously low and the night nurse discovered the day nurse was mistakenly giving my sister a very syrong blood pressure med in her i.v. I will question everything from now on.
Thats a tough one. I've been in the E.R when it was initially serious but they stablized me but me and my parents were sat there for HOURS Till i had a room to go to or released. The brightsides were no kink and Harlow, that was a loong time for all of you!❤️
I know it's her job, but I just gotta say, I absolutely love how attentive hippo is with you. She never takes her eyes off of you, and is just so well behaved. I have sacral a Genesis, it's a form of spinal bifida, and watching how helpful Harlow is, really makes me want to look into getting a service dog! Plus I'm so in love with animals so having a service dog would be awesome company a long with being super helpful...it's a win, win, in my book! Lol
My daughter had to get a GJ button a size up [in length] than her usual because her button broke on a weekend and that's what the hospital had. Turns out the longer tube has helped decrease pain and nobody knows why.
It could be. A friend of mine puts 1 cc less water in the balloon of her son's G tube to help with it being painful\GT so IDK if that would be something for you to consider un by your doctor. Our bodies are all so different finding what works can sometimes be tricky. Hope you get it sorted out.
Your dog is the sweetest! I always look forward to seeing her☺️ Mu husband and I just adore dogs! They are all so different. We have an American Bull dog who unfortunately isn't good with other dogs and takes a little bit to like people, but she loves/protects us very well. Dogs are Angels in dog bodies🤗You my Dear are an amazing strong lady! What an amazing attitude you have regardless of your illnesses! May God Keep blessing you immensely! When I think of you I pray for you🤗 You are a gift to many my Dear! One day at a time with God's love and help, anything is possible! Much love to you and yours💜
It's frustrating that medical staff mistakes keep affecting your life so negatively. I can't believe how calm you are about it. I'm glad you can handle it so well. But I am frustrated on your behalf. It's also disheartening that medical staff can't do their jobs better because it is so important that they do for people's wellbeing and health. Medical professionals are people too, but I wish they had a better system overall!
It totally is frustrating, but I see it from both angles. They were over run due to most people not having power, heat stroke, etc. But they filed the incident report and that showed them taking initiative which I really appreciated.
Chronically Jaquie my dear friend search alternatives outside convencional medicine! I.found some healing for my chronic desease from alternative methods. You teach me so much everyday, I always remeber when you say to be happy and grateful for small victories! I admire your pacience. Learned a lot how to manage the emotional.parte of my health issues! Pray for you everyday. God bless💜💚💙
Honestly, it happens a lot more than you'd think it does, especially for people with disorders that many medical professionals haven't even heard of. I went to the ER for stroke like symptoms and they refused to do the proper testing on me because I was 20, the ER doctor had never heard of EDS, I ended up needing more medical help later because I wasn't treated properly. It's pretty crap sometimes but there are some really great medical professionals as well!
I guess you could say you had a GUT feeling about the imaging XD In all seriousness, I hope the cause of the pain is found and resolved, whatever it is. Hopefully it won't be too long a process either. Your new mask is super cute!
Chronically Jaquie. I hope and pray you get this work with your feeding tube. Harlow is so sweet 🐕🐾💖I am glad you are all safe. How long do you think you will have to have the feeding tube? Hugs! Prayers🙏 love y'all💕🐕💪💗🇺🇸🐾💪💪💪💜💜
Articalz 3 years later me and my family are still mourning my puppy. Theres no time limit, Dont let ANYONE tell you " get over it" It will get a little better but you can decide that. *HUGS*
Wow that ER is lucky you are so nice! I would not have been happy but at least you got the results and you are OK. Glad for that and I am glad your home is OK. My aunt lives in palm Beach..I was born there but left when I was a year old and I have been back several times all by train...7 days there and 7 days back. Long trip but just stunningly beautiful! my Aunt stayed and has to deal with Irmacanes. Big storms there! I hope you feel better
Hi Jaquie! When you ask Harlow a command (e.g. around 3:40), are you doing hand commands in addition to vocal behind the camera? Or is Harlow able to recognize/distinguish between vocal commands?
I hope you and your doctor find the soirce of the pain and fix it soon! I want to work with chronic pain management when I end my medical residency, so I find very interesting when you talk about the ways you found to deal with your chronic pains... Like the heating pad for example!
Harlow is so adorable, I can't get over it! And that's irritating that they made you wait that long. I'm a nurse, and I would've come to realize eventually that something wasn't right if you were there that long.
Firstly, you are such a warrior and a huge inspiration for sharing your life! I can't believe how kind and down to earth you are! Secondly: Are you feeding at night? Do you experience nausea when/if you feed laying down? The reason I'm asking is that I've worked as an assistent nurse (working on the certification) with patients with feeding tubes connected to their jejunum. They were feeding at night and we had to make sure they were almost sitting up in their beds so the formula wouldn't travel back their digestive system and make them nauseous or throw up. I'm sorry if it's a rude question, I don't mean to offend!
Agnes Gröndahl not offensive at all! I feed 24/7 and do have to make sure I'm inclined ar night or I'm sick in the morning. Hoping to get an adjustable bed in the future! (:
I'm so sorry that you had to wait for so long. You are so patient though! I have rarely had to go to A&E for physical stuff, but when I last went for mental health issues I had to wait a whole afternoon to just be given an appointment for the next day, and then given some leaflets at that appointment and told to wait for local help. If I'd stayed in that area it would have been two years before I could see a basic therapist :( Really hope that you feel better soon, and that you can get this issue sorted x
Chronically Jaquie Thank you so much Jaquie x Thankfully I've now moved to somewhere where the mental health support is much better, although I've had to interrupt my university education to do this :P But you have really helped me become my own advocate, and have given me the confidence to wear my headphones in public when my sensory processing is an issue x I really hope things start getting somewhere for you!
I hope they can figure out the pain soon! And I totally relate to the hospital issue!! In the last 8 weeks I have been horribly malnourished. Lost 59 lbs, went 24 days with no food, just water, and now have new issues with my kidneys, liver & heart. Between 2 hospitals, I've had an NJ & NG and tolerated the formula. But no one is willing to leave it in outside of the hospital. It sucks! So you guys certainly get great care in other states! PA's only option is to starve patients to death. I hope no one has to live with the malnourishment I've been living through. (I now can only eat 3 duck eggs per day and water.). Blessings to you!!
Since the hurricane, I have a friend in an ER who was supposed to be put in a room, but was still waiting after 24 hours. This was Friday night, so not right after the hurricane.
I've had that happen before. I went to urgent care for an allergic reaction where my face had been swelling. They checked my vitals and said I was ok but they were going to need to give me shots to make sure the swelling went down and didn't get dangerous. They left me waiting for over four hours and by the time someone remembered me the swelling had gotten worse and I also needed epi.
I have a few health issue but thankfully I have never had to go to the ER. I'm glad that the imaging didn't show anything wrong. Hopefully your dr will be able to help you. On a different topic I was wondering where you got those copper bedside lights that attach to your bed frame? They look pretty neat and I like how small they are.
I was in er for 9 hours not to long ago 8 am till about 4 or 5 in the afternoon, i was lucky that the waiting room was empty. I had a pretty bad lung infection, i couldn't take full breaths and was in constant pain i couldn't breath at all while laying on my sides. A doctor comes in and tells me ''We found a mass next to your heart, but don't get upset its just a cyst'' i have a cyst attached to the sac lining next the heart, its known as a pericardial cyst. However it shouldn't be a problem as it doesn't have any sorta symptoms unless it grows in size and interferes with my heart. I'm just laying there in the hospital bed. i was tired, kinda grumpy, and just wanted to go home, but sense they found the cyst i had to sit there for so much longer.
Finally have internet again and binged the past week!! Glad everyone is doing well and you're back to your normal. Is it just me or is the switch to the new nutrition formula working better for you?
Can you get Lidocaine Gel or patches to place around the stoma? I have a Stoma I cath out of, and my lidocaine patches really help. ASK YOUR doctor for them.
I hope that wasn't rude of me to ask the question I asked, I asked because I have Lupus and chrones disease and I had a feeding tube for a while, I had to have surgery to close my atoms because I had it so lone and after developed adhesions, had surgery to take what they could take of that, So painful ! And I didn't know the rest of your intestines where ok! Hope you get some relief! 😊
Shelby Greenwood you're question was not rude at all! It was very helpful. (: But Molly resonded in a very derogatory way towards me. Instead of engaging in the ignorance, I just delete and block. You did nothing wrong! As for Janiece (The Raw Life), that's just her being her lol and we love her for it. 😅
I'm glad you are back home. First step done in doc determining cause of pain this time. It's hard jumping through the hoops, but you have such a great attitude I'm sure that really helps you. Harlow and your mom are so great, real Blessings for you. Can a local seamstress sew on more comfortable ear straps? Maybe even make a pattern of the mask you like and they can make you a bunch of them in fabrics you love and even make coordinating headbands too. How cute would that be! Just an idea. I pray your pain subsides, more importantly, I pray the doc figures out the cause. ❤️🌈❤️🐘🌈❤️
It stinks you haven't found a solution even if temporary to this pain yet. I hope that you can find one soon. I hope you can go to an outpatient clinic next time. I agree that going to an ER isn't necessary.
I am sorry that you had to wait so long in the emergency room! It totally sucks! I had my first ever ER visit last year and thought I had a kidney stone but it turned out to be a ruptured ovarian cyst. They made me wait in the waiting room for 2 hours and then brought me back and the ER doctor was very unhelpful - basically treated me like I was drug-seeking since my pain decreased from the point I arrived to the time I was brought back. Nothing was done in the end and I was forced to follow up with my PCP and OB/Gyn to get answers. Why don't people do their jobs? It's so frustrating when you're worried about something and you don't get the help you need in a timely fashion. I hope you get answers soon so you can stop experiencing feeding tube pain. BTW, I am looking into getting a service dog or, at the very least, an emotional support dog for my depression and anxiety. I read an interview you did last year and they mentioned that you got Harlow from EagleRidge Goldens in Polk County. Is that correct? Is that where Orion was bought from, as well? I want a reputable breeder so I know exactly what I'm getting and Harlow seems very smart and healthy. Thanks in advance!
I am so sorry, the other day my daughters got pulled out and blood started to pour out of her hole and I ended up replaceing it at home and calling 911. hope they find out what is going on.
My doctor thinks I have Neurocardiogenic Syncope, which I think you have, and I'm doing blood work for it soon to get an actual diagnosis. Do you have any pointers for it? I believe mine is caused mostly from standing/walking a long time, because I have increasingly had to take breaks on the floor while shopping. I'm also at college now and taking a 15 minute walk/bike across campus is difficult. Take care
Remember when hippo got the ranch instead of the water ? I don't know why but i just remembered. 😂 I hope you feel better Jaquie.
Lol I do! Now our fridge is empty and she has nothing to grab :P
Mary Liz thats my favorite.🙂🤗
😂❣
13:00 You should write a letter about what happened and how the hospital staff responded to it. They get so many complaint letters, they love getting positive feedback, and knowing how they get things right.
I had a doctor's appointment once and getting there isn't easy for me. I have to take two buses and it takes about 1.5 hours to get there.
Once I got there I was told that the appointment had been canceled. They were suppose to have called me to let me know, but somehow the ball got dropped. The staff I dealt with were really nice, even though I wasn't happy about the wasted trip, they got everything set up.
I wrote a letter to the manager explaining what happened and what was done to resolve things. AND I named names. The manager called me to get more information and thanked me for the kind letter.
That is a good idea (:
Feeding tube pain is the worse. You did the right things with heading to the hospital.
Katie Lunsford agreed!
Awe thanks! I felt silly for being there because it was not a huge emergency. I am hoping that imaging can be done somewhere more practical in the future.
Chronically Jaquie tube pain is the worst! I've been there girl. I have the multiple scars to show it-- but when my tube hurt it was awful!
I wish hospitals had an "emergency" department for true emergencies and an "urgent care" department for urgent things that are not emergencies. Outpatient urgent care centers often don't have the same resources as the ER, so it would be awesome if all hospitals had one built in.
True! My local ER has something called a "Super Track" where non-life threatening emergencies go and dividing us like that helps things move faster for everyone. I had to go there one day when my tube clogged and because they divide the urgent cases from emergent cases, we were in and out! The hospital my GI practices at is not the same as my local one.
In the UK we have A&E (accident and emergency) and then also have Minor Injuries units. They handle things like sprains, broken bones, minor burns, things like that. Basically, if it needs seeing to but isn't potentially life-threatening.
www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/Minorinjuriesunit.aspx
They're really great!
You are an inspiration in positivity while facing chronic illness,I also have GP and have FM as well. I'm trying to be more positive and watching you "on your adventure" makes me feel like there are those who understand what it's like and makes it a little less lonely. I started watching you a few months ago and now I also watch The Raw Life, I love you guys!
Hope you can get that pain issue resolved. Being in pain is not fun! Prayers!
Your patience and understanding is so inspiring!! Most people would have been furious for being overlooked in the ER but you are always so graceful under difficult circumstances. Thank you so much for sharing your adventures.
Melissa Wolf thank you! I do my best to practice peace and grace. Doesn't always work 😅
Hippo is sooo adorable!! Give her a cuddle from all her fans!!! Is such an professional SD. She deserves a day off tomorrow!!
Totally understand disliking ER. Once waited 10hrs with my Mom for mild stroke. I had to finally get firm to get attention. Cute mask and pad! Feel better!
Yeah my mom started asking firm questions and that is when we started getting asnwers.
i thought things like that only happen in Russia where nobody cares about you or your rights until you go agressive :D sorry you had to go through this waiting :(
10 HOURS FOR A STROKE?! that is so wrong!!
Stephanie Sposato wrong? It's completely normal where I live (one of EU countries). We usually wait 10-14 hrs to get help on ER. Once I was waiting for 12 hours with severe asthma attack and 10 hours with a migraine attack.
Oh god, 8 hours?? You are so patient!!
PoundToundHound haha I'm patient when I need to be
So glad you are safe at home.
I love the nurses at hospitals especially in the pediatric center because they are so sweet and they listen and care for you
Omg 'see you next time' is not something you should say to someone leaving the ER 😂 Good job Harlow though! Give her lots of kisses and hugs and praise for being so well behaved
Lol I agree!
Hippo is awesome!
My Hanna banana stopped me last night on the way to bed to do her sniff check to make sure I took all my inhalers. She was right I hadn't done my nasal inhalers yet. That was on my next to do before hopping in bed. But it was very good to see her practicing her skills she picked up on naturally.
Then we played a little fetch with her favorite stuffy a little dog. I will have to record her one day.
That is great!
Melissa Rennells ...wow! That's impressive. I've been watching a bunch of videos with service dogs to see the many ways they can be helpful. I'm always amazed at the skills they can be taught, and those they pick up themselves naturally. It's hard for me to understand how they grasp certain tasks, like knowing if you've done your entire bedtime medical routine. Amazing!
Turns out she was alerting to a infection. I woke yesterday coughing up icky stuff and a fever.
I felt so icky last night I laid down in bed early to just rest.
She laid with her head on my hand while I dozed off and on.
She the tried cheering bringing me her stuffy dog for a little fetch. I couldn't help laughing.
I'm glad you are finally home from hospital because that was a long time. Hope your pain eases and go away completely. Harlow is so awesome.
Praying you start to feel better soon hun. So sorry they dropped the ball with reading your imaging and it was a bad experience. Lots of love being sent your way. And so glad Harlow did so well at the E.R. She really is a great pup, glad she is getting a day off too. Have a great day hun!
I had a similar experience on Thursday regarding my port needing cathflo for a fibrin sheath. Was told to go to ER by my HH nurse and felt like it wasnt 'emergency enough' because I could still infuse. Turns out I could have gone to an outpatient clinic. Oi. Long day.
So glad you have Harlow to help you and that there are no kinks :)
Yeah I much prefer out patient centers to the ER any day!
omg eight hours...the most ive been at the ER is like five...and i get impatient when i have to wait like 30-45 minutes for my GI appointments. it's so good that you're so understanding and patient. a lot of other people probably would've thrown a fit. i hope you can figure out the cause of these pains too!
Well we had to get a bit testy towards the end for them to realize the mistake made but all worked out in the end (:
I hope the pain you have goes away. I'll be praying for you.
You have a great attitude. It's nice to see people who understand that yelling and swearing and getting stressed doesn't accomplish anything. In fact, it makes things worse.
Jacquie, your ability to put events in proper perspective show maturity way beyond your years. Most people young or not would have have stronger anger reactions to being overlooked for so long. You were able to see this for what it was and move on. An inconvenience and major irritation but not a life threatening event. Kudos to you! (And your mom)
You and Harlow are amazing, being able to go through life being so positive when your in pain almost constantly. It's just such an inspiration to me and probably countless others. I hope you have a better day tomorrow. Would love to see some of Harlow on her day off 😊🐶.
headbands literally look soooo good on you omg
This scared me! Stay safe Jaq! Praying for you. Love from canada. ❤❤❤❤❤
Caroline (my 21 yo daughter who has GP, EDS, POTS, MCAS, Fibro) and I spent 6 hours in the ER last night. She had an allergic reaction to her Levisin, which she has been taking for a year to help with dry heaves. Things were going well, the doctor was great, asked what our protocol was and followed it. Then she reacted to one of the protocol meds (Pepcid) and things got worse. She had tremors (could be undiagnosed seizures), and lost the ability to pick up her arms and legs. They gave her a new steroid for her because she reacts to Solumedrol as well.
Thanks for sharing your adventures. The life of a spoonie is never dull, that's for sure. I understand the frustration, and your ability to show grace. The doctor didn't intentionally forget to look at your films. I'm sure you have met enough doctors who aren't so understanding of chronic illness and are just rude. It's easier to forgive someone's mistakes than to deal with someone intentionally being unkind.
So true and I hope your daughter it doing better. It is so hard when you start reacting to your usual meds!
I'm so sorry you're in pain! Praying they figure out the culprit soon and you start feeling better! God bless!
I could be alone on this one but I feel like "See you next time!" is a Really wierd thing to say at the ER XD.
Hope your pain gets better soon!
Lol my mom and I thought it was weird too!
Lol I laughed at the "See you next time!" part! He probably thought he was pretty funny too! 😂😂
Maybe it's like when the waiter says 'enjoy your meal' and you say 'thanks, you too' and then you curl up and die
As a nurse I highly appreciate people who understand that things can slip through the crack sometimes. Being behind the scenes is totally different from being the patient. We try to do things perfectly but there are times when something comes up and we get distracted and to use our attention to another patient who is critically ill. We aren't perfect and doctors aren't perfect either.
I totally get that, I have been sick long enough to realize that no matter what your profession is, human error is a thing! I was really appreciative that the nurses apologized when they found the mistake. All I ask is for compassion and ethical care (:
I want to puppynap Harlow, but I think you need her more than I do. She's so sweet, clam and adorable and she's not even what I would consider an adult dog yet. You got lucky when you found her!
I've found if I size up one size on the Vogmask, it helps eliminate the pinch. I've got RA, and have been rocking them for a while now. I've found the size medium fits the ears better, even though a size small fits my face better.
Here in CA when my mom's doctor wants her to get X-rays she puts in the order and then I can take my mom to the hospital at our earliest convenience. We go to the radiology department check in and get in line. It's still first come first serve. But since everyone in the line is getting some form of imaging the line moves fast. Same goes for blood work and quick-care (when someone has a minor issue like a scrapped knee or cold). The emergency department can then focus on emergencies. Which is how I think it should be. Clearly this is a hospital logistics problem.
Jaquie I've decided pink is my favorite color. Partly because i realized that its beautiful; I see it everyday in your vlogs.
It is my favorite as well, I love it!
Im a surgical nurse, I think you should....get lubrication, disinflate balloon and quickly take out the port n rub lubrication on balloon area and re-insert the port n the inflate again. That tends to happen....raw skin on inside rubbing on the balloon.....what we do is lubricate it.
I cannot take it out as it would dislodge the Jejunal tubing, but I am hoping that maybe deflating and reinflating the balloon might help!
I love that new mask!! It's absolutely gorgeous, and I happen to have a pair of pants that look VERY similar!
Sorry you went thru that experience with the hospital.Unfortunately at 60yrs old i have seen life threatening mistakes with family members.My Mom used to always say you needed a family member with you when you went to the hospital to loik out for you if you were unable to speak for yourself.The last time i was with my handicapped sister in the hospital,her blood pressure was dropping dangerously low and the night nurse discovered the day nurse was mistakenly giving my sister a very syrong blood pressure med in her i.v. I will question everything from now on.
Yes it is always good to have someone with you and good to be involved in your care!
Thats a tough one. I've been in the E.R when it was initially serious but they stablized me but me and my parents were sat there for HOURS Till i had a room to go to or released. The brightsides were no kink and Harlow, that was a loong time for all of you!❤️
I know it's her job, but I just gotta say, I absolutely love how attentive hippo is with you. She never takes her eyes off of you, and is just so well behaved. I have sacral a Genesis, it's a form of spinal bifida, and watching how helpful Harlow is, really makes me want to look into getting a service dog! Plus I'm so in love with animals so having a service dog would be awesome company a long with being super helpful...it's a win, win, in my book! Lol
My daughter had to get a GJ button a size up [in length] than her usual because her button broke on a weekend and that's what the hospital had. Turns out the longer tube has helped decrease pain and nobody knows why.
I am wondering if mine is too small? So glad hers is feeling better!
It could be. A friend of mine puts 1 cc less water in the balloon of her son's G tube to help with it being painful\GT so IDK if that would be something for you to consider
un by your doctor. Our bodies are all so different finding what works can sometimes be tricky. Hope you get it sorted out.
Your dog is the sweetest! I always look forward to seeing her☺️ Mu husband and I just adore dogs! They are all so different. We have an American Bull dog who unfortunately isn't good with other dogs and takes a little bit to like people, but she loves/protects us very well. Dogs are Angels in dog bodies🤗You my Dear are an amazing strong lady! What an amazing attitude you have regardless of your illnesses! May God Keep blessing you immensely! When I think of you I pray for you🤗 You are a gift to many my Dear! One day at a time with God's love and help, anything is possible! Much love to you and yours💜
Hope Judd comes home for you soon. Take care praying for you guys.
It's frustrating that medical staff mistakes keep affecting your life so negatively. I can't believe how calm you are about it. I'm glad you can handle it so well. But I am frustrated on your behalf. It's also disheartening that medical staff can't do their jobs better because it is so important that they do for people's wellbeing and health. Medical professionals are people too, but I wish they had a better system overall!
It totally is frustrating, but I see it from both angles. They were over run due to most people not having power, heat stroke, etc. But they filed the incident report and that showed them taking initiative which I really appreciated.
Charlene B I just have to tell you I love that name Charlene...it was my Mothers name also my daughters name.
Charlene B it's hard, They sleep at the hospitals when hurricanes happen. I'm sure everything was up in the air because of the hurricane here..
Chronically Jaquie my dear friend search alternatives outside convencional medicine!
I.found some healing for my chronic desease from alternative methods.
You teach me so much everyday, I always remeber when you say to be happy and grateful for small victories! I admire your pacience.
Learned a lot how to manage the emotional.parte of my health issues! Pray for you everyday.
God bless💜💚💙
Honestly, it happens a lot more than you'd think it does, especially for people with disorders that many medical professionals haven't even heard of. I went to the ER for stroke like symptoms and they refused to do the proper testing on me because I was 20, the ER doctor had never heard of EDS, I ended up needing more medical help later because I wasn't treated properly.
It's pretty crap sometimes but there are some really great medical professionals as well!
Such a good Dog being by your side through God bless her
I pray you get better rooting for speedy recovery🙌🙏
I'm so glad that your home is okay ❤️ I hope you'll feel better soon... 💛
Hope u feel better !!!💞
Glad all is good, I hope you find a resolution to the pain very soon!
I guess you could say you had a GUT feeling about the imaging XD
In all seriousness, I hope the cause of the pain is found and resolved, whatever it is. Hopefully it won't be too long a process either.
Your new mask is super cute!
It's great to see Harlow excited about her work. I am sorry your not feeling well
i recommend trying a cambrage mask, they have it on amazon prime. their really similar to the vlog but the ear loops are more comfortable.
I am early but this made my day I went through a pet death today but your videos cheered me up!
I am sorry to hear that, that is always so tough :( Hang in there!
Chronically Jaquie. I hope and pray you get this work with your feeding tube. Harlow is so sweet 🐕🐾💖I am glad you are all safe. How long do you think you will have to have the feeding tube? Hugs! Prayers🙏 love y'all💕🐕💪💗🇺🇸🐾💪💪💪💜💜
Articalz I'm so sorry.
Thank you so much I am making to through even though it is hard!
Articalz 3 years later me and my family are still mourning my puppy. Theres no time limit, Dont let ANYONE tell you " get over it" It will get a little better but you can decide that. *HUGS*
So sorry that you had to go to the er! Hope you feel better my best wishes❤❤
I'm so sorry that experience was soooooo long. You're so sweet for being so understanding but it's ok to be annoyed too.
Wow that ER is lucky you are so nice! I would not have been happy but at least you got the results and you are OK. Glad for that and I am glad your home is OK. My aunt lives in palm Beach..I was born there but left when I was a year old and I have been back several times all by train...7 days there and 7 days back. Long trip but just stunningly beautiful! my Aunt stayed and has to deal with Irmacanes. Big storms there! I hope you feel better
Could you use a respirator?or does that also apply pressure on your face?
Off topic but i love how your headband matches your hospital gown
Hi Jaquie! When you ask Harlow a command (e.g. around 3:40), are you doing hand commands in addition to vocal behind the camera? Or is Harlow able to recognize/distinguish between vocal commands?
I was just pointing towards where I thought my shoes were and she found them (:
Could you give me a link to your new mask from Etsy? Thanks so much! :D
Syrian Sugar vogmask.com or just google vogmask
I'm not sure about the etsy one though
I do not have a link but just search it, it was really easy to find (:
Roz Jones Thanks, I already knew about vog mask and I wanted the etsy one. Thanks for your help! :)
Chronically Jaquie Okay! Thank you very much! ☺️
Try doing a search for allergy masks
Hugs for your wonderful momma and Hippo
Harlow rocks! Sorry that you had to go through that at the hospital. Let's hope they can figure out what the pain is. Sending prayers. ❤️
Iwas in the ER the other day, they didn't find anything but im stuck in a wheel chair. I spent a day the ER.
I am sorry, I hope you get answers!
Chronically Jaquie thank you
11:57 She was helping me up and down" Harlow *thumps down
This made me laugh.
Woah I just realized how FANTASTIC jaquie's natural eyebrows are👌👌👌
I hope you and your doctor find the soirce of the pain and fix it soon! I want to work with chronic pain management when I end my medical residency, so I find very interesting when you talk about the ways you found to deal with your chronic pains... Like the heating pad for example!
Because of storm damage and power outages your doctor no doubt felt the hospital was the best place for the tests.
That is also a really good point! I trust my doc 100%. Just wish there was a more practical way.
Feel better, Jacquie! Harlow is such a wonderful, smart girl.
That Imaging to will show up on that it shouldn't be a problem to see with imaging if they use an MRI
Harlow is so adorable, I can't get over it! And that's irritating that they made you wait that long. I'm a nurse, and I would've come to realize eventually that something wasn't right if you were there that long.
I agree about the Vog mask. I had to get a medium due to my face size but the large ear straps were better.
I think in tommorwws vlog you should do show us what is in your feeding tube bag .😗🌹
Shoshana Siegel I'm putting this in my feeding tube video I'm working on now (:
I hope your pain gets better soon! ❤️ I also hate going to hospitals lol
Firstly, you are such a warrior and a huge inspiration for sharing your life! I can't believe how kind and down to earth you are!
Secondly:
Are you feeding at night? Do you experience nausea when/if you feed laying down?
The reason I'm asking is that I've worked as an assistent nurse (working on the certification) with patients with feeding tubes connected to their jejunum. They were feeding at night and we had to make sure they were almost sitting up in their beds so the formula wouldn't travel back their digestive system and make them nauseous or throw up.
I'm sorry if it's a rude question, I don't mean to offend!
Agnes Gröndahl not offensive at all! I feed 24/7 and do have to make sure I'm inclined ar night or I'm sick in the morning. Hoping to get an adjustable bed in the future! (:
I'm so sorry that you had to wait for so long. You are so patient though! I have rarely had to go to A&E for physical stuff, but when I last went for mental health issues I had to wait a whole afternoon to just be given an appointment for the next day, and then given some leaflets at that appointment and told to wait for local help. If I'd stayed in that area it would have been two years before I could see a basic therapist :( Really hope that you feel better soon, and that you can get this issue sorted x
That is terrible, I am so sorry! I wish then had taken you seriously :/
Chronically Jaquie Thank you so much Jaquie x Thankfully I've now moved to somewhere where the mental health support is much better, although I've had to interrupt my university education to do this :P But you have really helped me become my own advocate, and have given me the confidence to wear my headphones in public when my sensory processing is an issue x I really hope things start getting somewhere for you!
My dad had that pain when he had his feeding tube
Edit: sounds exactly like what he went through
I hope they can figure out the pain soon! And I totally relate to the hospital issue!! In the last 8 weeks I have been horribly malnourished. Lost 59 lbs, went 24 days with no food, just water, and now have new issues with my kidneys, liver & heart. Between 2 hospitals, I've had an NJ & NG and tolerated the formula. But no one is willing to leave it in outside of the hospital. It sucks! So you guys certainly get great care in other states! PA's only option is to starve patients to death. I hope no one has to live with the malnourishment I've been living through. (I now can only eat 3 duck eggs per day and water.). Blessings to you!!
Since the hurricane, I have a friend in an ER who was supposed to be put in a room, but was still waiting after 24 hours. This was Friday night, so not right after the hurricane.
The power outages are still pretty bad unfortunately :/
You can pull on the ear straps of the Vogmask to make them fit you better. ^_^ You'll hear a ripping sound and then the loops are a bit bigger.
Hope you get better!!!
I've had that happen before. I went to urgent care for an allergic reaction where my face had been swelling. They checked my vitals and said I was ok but they were going to need to give me shots to make sure the swelling went down and didn't get dangerous. They left me waiting for over four hours and by the time someone remembered me the swelling had gotten worse and I also needed epi.
Oh my gosh that is terrible!
Chronically Jaquie yeah. I try to be more forceful when I have to go now but I hate feeling like a bother.
God luck 👍🏻😊
Harlow is an angel!....my dog would have been getting antsy 1 hour in! :)
I hope Harlow is enjoying her day off🙃
Hallo Jacqui!
Take my hat off to you, Harlow, Jedd, and, of course, your amazing mum☺
All love, and best wishes, Claire, Berlin, Germany 😊
I have a few health issue but thankfully I have never had to go to the ER. I'm glad that the imaging didn't show anything wrong. Hopefully your dr will be able to help you. On a different topic I was wondering where you got those copper bedside lights that attach to your bed frame? They look pretty neat and I like how small they are.
I have EDS too so this channel is really inspiring for me.
I hope you feel better soon ❤️
I was in er for 9 hours not to long ago 8 am till about 4 or 5 in the afternoon, i was lucky that the waiting room was empty. I had a pretty bad lung infection, i couldn't take full breaths and was in constant pain i couldn't breath at all while laying on my sides. A doctor comes in and tells me ''We found a mass next to your heart, but don't get upset its just a cyst'' i have a cyst attached to the sac lining next the heart, its known as a pericardial cyst. However it shouldn't be a problem as it doesn't have any sorta symptoms unless it grows in size and interferes with my heart. I'm just laying there in the hospital bed. i was tired, kinda grumpy, and just wanted to go home, but sense they found the cyst i had to sit there for so much longer.
Hope you are able to figure what is causing the pain. I know that for me not knowing is so frustrating.
Also, what does a day off for Harlow mean?
She just stays home (:
Well done Harlow super long time at ER xx
My doctor recommended a heating pad for my chronic neck/shoulder pain and I remembered you used one in previous vlogs. What heating pad do you use??
Finally have internet again and binged the past week!! Glad everyone is doing well and you're back to your normal. Is it just me or is the switch to the new nutrition formula working better for you?
Glad you are back! I am also not on any new formula yet
A confused Glen is quite likely. Well, you're looking healthier anyway!
Can you get Lidocaine Gel or patches to place around the stoma? I have a Stoma I cath out of, and my lidocaine patches really help. ASK YOUR doctor for them.
I love Harlow's paw at 3:01 😂
I got notifications that a Molly responded to my question for you but it seems as though it was erased?
Why would you do that?
Shelby Greenwood because she was very rude and I don't need that kind of hostility on my channel.
I hope that wasn't rude of me to ask the question I asked, I asked because I have Lupus and chrones disease and I had a feeding tube for a while, I had to have surgery to close my atoms because I had it so lone and after developed adhesions, had surgery to take what they could take of that,
So painful !
And I didn't know the rest of your intestines where ok!
Hope you get some relief! 😊
Shelby Greenwood Don't question her motives‼️ She is god⚡️⚡️⚡️of her TH-cam channel 😂😂😂😂.
Shelby Greenwood you're question was not rude at all! It was very helpful. (: But Molly resonded in a very derogatory way towards me. Instead of engaging in the ignorance, I just delete and block. You did nothing wrong! As for Janiece (The Raw Life), that's just her being her lol and we love her for it. 😅
Chronically Jaquie I love my comment!!! It's full of powerful sarcasm 😂😂
I'm glad you are back home. First step done in doc determining cause of pain this time. It's hard jumping through the hoops, but you have such a great attitude I'm sure that really helps you. Harlow and your mom are so great, real Blessings for you. Can a local seamstress sew on more comfortable ear straps? Maybe even make a pattern of the mask you like and they can make you a bunch of them in fabrics you love and even make coordinating headbands too. How cute would that be! Just an idea. I pray your pain subsides, more importantly, I pray the doc figures out the cause. ❤️🌈❤️🐘🌈❤️
Maybe! I honestly do not mind though, but may look into that. I have a seamstress who does my feeding tube backpacks :)
I got so scared something happened to you (WHERES MY NOTIFICATIONS SQUAD AT)
It stinks you haven't found a solution even if temporary to this pain yet. I hope that you can find one soon. I hope you can go to an outpatient clinic next time. I agree that going to an ER isn't necessary.
I am sorry that you had to wait so long in the emergency room! It totally sucks! I had my first ever ER visit last year and thought I had a kidney stone but it turned out to be a ruptured ovarian cyst. They made me wait in the waiting room for 2 hours and then brought me back and the ER doctor was very unhelpful - basically treated me like I was drug-seeking since my pain decreased from the point I arrived to the time I was brought back. Nothing was done in the end and I was forced to follow up with my PCP and OB/Gyn to get answers. Why don't people do their jobs? It's so frustrating when you're worried about something and you don't get the help you need in a timely fashion. I hope you get answers soon so you can stop experiencing feeding tube pain.
BTW, I am looking into getting a service dog or, at the very least, an emotional support dog for my depression and anxiety. I read an interview you did last year and they mentioned that you got Harlow from EagleRidge Goldens in Polk County. Is that correct? Is that where Orion was bought from, as well? I want a reputable breeder so I know exactly what I'm getting and Harlow seems very smart and healthy. Thanks in advance!
I personally would not go with them
omg 12:00 harlow's so tired. she jusy plopped her head down😂❤️
Can you change your own tube button? That way you could double check the simple stuff?
I am so sorry, the other day my daughters got pulled out and blood started to pour out of her hole and I ended up replaceing it at home and calling 911. hope they find out what is going on.
My doctor thinks I have Neurocardiogenic Syncope, which I think you have, and I'm doing blood work for it soon to get an actual diagnosis. Do you have any pointers for it? I believe mine is caused mostly from standing/walking a long time, because I have increasingly had to take breaks on the floor while shopping. I'm also at college now and taking a 15 minute walk/bike across campus is difficult. Take care