Seeing you cry just breaks my heart. I'm so sorry things aren't going that well with your bladder. Sometimes you need to let it out and its okay! Things will get better!
No need to apologize for tears, Jaquie. It's how we express frustration and stress. And pain and allergic reactions can bring out the those reactions too. I had the "can't pee" thing after one of my surgeries, super painful! Praying for a speedy recovery. Hug your hippo!
Jacquie, I was crying with you. I know how frustrating being in the hospital can be and your body not wanting to do what it's suppose to. I spent 5 months in the hospital from September through February. It sucked, but I was there because thats where I needed to be. Hang in there and know there are a lot of people praying for you and sending you good vibes. Love you!!
Your bladder is stubborn, but it will go back to work in a few days, never you fear. My husband had back surgery a couple years ago, and he had to have a catheter for 10 days, but then everything was fine. I’m sorry you’ve been frustrated; being in the hospital really is tough, but you have a great support system, and you are a strong woman. Good luck dear.
I've been praying for you since the day of the surgery. Will keep on doing so + sending you healing vibes. Remember it's okay to cry and be frustrated. Also remember that you are so brave and you will keep moving forward. Lots of love
I'm so sorry for your pain! I pray you get better soon! You are so strong!!!! My mom has Cidp and many autoimmune disease and it's so sad all the complications that's happen. My mom was on IVIG but doesn't do it now because it does not do much for her. She is in pain everyday and in bed :( it breaks my heart that you go through this and her. I pray for good health for you! You are extremely strong!
CIDP is an awful disease. I have it and like your mom a host of other autoimmune diseases. I also had to stop my IVIG and am now taking Chemo for control of some of the diseases and it also helps to some degree with the CIDP. Without it, I was completely bed bound as well. Prayers for your mom and for you. Stay strong💜🥄💜🦄💜
Just let the tears of frustration out. Let your body get the stress out, even if it feels like beeing weak. You will be up and on a new adventure in no time. We all pray and light candles for you!!
I'm so so sorry you are struggling so much. I know I have at least one surgery coming up, and I worry about pain management and mast cell reactions as well. It sounds like you have an amazing team to medical professionals who are working hard to help you get through these head days. Praying for you!
Sending all the love and well wishes to you Jaquie! Praying for the best for you during this difficult recovery. You have such an amazing family who loves and supports you, and also your UA-cam followers are rooting for you!! also, HAD to tell you, that in the middle of this video, I got a text saying I got ACCEPTED to my #1 choice college!!! AAAAAAA
We love u jaq. Ur really tough. Everything will be ok. Just breath. One step at a time. Awww... Look at hippo. She knows that ur in pain, so she's not happy. Don't worry, Orion will come.
Seeing you in so much pain hurts my heart, but it’s amazing how you truly show us the good and the bad that comes with chronic illness. You are a fighter. You are a warrior. Sending all my love and thoughts for recovery and happiness ✊🏻💓
Crying right along with you in the video! I’m so sorry you’re having such a hard time. Hopefully the next few days will just be better, and better. Praying for your comfort. You have such an amazing family! I’m so glad you and your Mom are playing Trouble! You do have such a great support system in your in-laws, husband and Mom, I’m so glad to see it.
BABE. Please please please keep your head up. It breaks my heart to see you cry because I KNOW how strong you are. Your body is going through so much right now and you are doing so amazing! Be patient with yourself, please. You are such a beautiful human being and I know you can get through this. “Keep moving forward”. 💓💖 We love you.
Jaquie, PLEASE do not apologize for getting upset.! You are allowed......between the surgery, the reactions, the pain, the spasms, etc., you have every right to have a meltdown every now and then. please don't feel that you "have to" only show us only your positive attitude (which is great by the way!) but you're allowed to be human too! I know you get tons of advice that you don't ask for but I think its because we all care for you and your family so much, we would like to offer any help we can. on that note: I too, suffer 24/7, 365 muscle spasms and after 11 years of on and off pain meds, muscle relaxers, etc., this month we tried something new----clonazepam, or Clonipan is the generic I think. anyway, for the first time in 11 years, my pain med intake has been cut in half and I am continuing to use less and less pain meds! This, after 11 years of non-stop pain! It has also helped with the sometimes off-the-wall anxiety that creeps up out of nowhere. and I'm on the lowest dose! I'm not saying this would work for you becuase each of us metabolize meds differently, but after a year of Ativan---which kind-of helped a little, I now have a few hours and sometimes, even most of the day, my spasms have been minimal! It is a Benzodiazepine but in small doses like mine, .05, the addiction factor is almost zero and your fantastic team of caregivers will ensure you get it just for the amount of time that is needed. Again, sorry for putting my two-cents in when you didn't ask for it, but please understand, it's only a suggestion to discuss with your team, and it's only because we (me and my Service Dog, Bodhi) care and dislike seeing anyone we care about in pain. Oh, and I think your mom cheats at Trouble! Lol's......no one can possibly win as much as she does! I think I can speak for most of us of how happy we are what a great support system you have! Blessings to you, Judd, Harlow, and Mom!
It is heartbreaking to see you cry. But we all have our overwhelming moments and i know you keep looking forward. Keep strong! We are all cheering you on!!
I know how you feel:( I can’t pee off and on for months almost a year and feeling like I have a bladder infection when I did actually go pee. It’s hard my doctor are still trying to figure out but your videos help me so much by seeing others going through similar problems
Sending you get well wishes! When I was in the hospital I actually heard "hospital" noises so much that I eventually was able to block them out! Man, those noises were aggravating as heck! though! One step is still a step! Best wishes!
Jaquie hang in there! You will get better! Your in the thick of it right now but there is a light at the end of the long tunnel! And though it may be long God is holding your hand every step of the way! I know it is so hard to have hope Ive got anxiety and it’s hard to see hope but it is there! Don’t let your symptoms get you down! I will be praying for a speedy recovery!❤️😘
Jaquie you are so strong, and some times cry is a strong action too! Being able to vent out some frustration crying helps so much! And so happy you have a supportive family and doctors!
Praying for you! I have multiple health issues and had multiple surgeries as well! I know a little what your going through. You are a trouper, stay positive as you always do!!!
I wanted to cry! I have been there...I am SO glad they finally LEFT the darn catheter in instead of repeating the darn thing over and over. Let things "wake up" naturally and on their own time without making you worry in the meantime. Another few days and you'll see some big improvements. Abdominal surgery is (in my opinion) the WORST!!!
You're very strong, sad to see you so upset but i can understand why its frustrating *lots of hugs* you can push through this you know this and say it =3 hope you heal safe and fast
Aww Jaquie!!! I’m so sorry this has been so difficult but I’m the end it will be worth it! Despite being in pain and being frustrated, you have such a strong willingness to get better and focus on the positive and that is so admirable!!! Love you!! Praying for you!
I hope by now your bladder has started working for you but just incase I figured I would share my story. I had abdominal surgery on the 9th (not as extensive as yours) and my bladder didn't work either. My doctor explained to me about some organs might have trouble waking up after general anethesia like you said but he also told me that with the pain and trama to the abdominal muscles it's possible that your muscles are really tense and can't relax enough to release the pee. They tried muscle relaxers on me and I was able to go a little bit but what actualy got me to be able to fuly drain my bladder was getting my pain under control. As soon as we found the right medicine I got onto that commode and peed like I hadn't in years. I know it's frustrating and one more thing to deal with while trying to recover but it will pass. Hope you start feeling better soon!
I have dysautonomia too that was caused by my celiac disease which was diagnosed about 2 years ago. The dusautonomia affected my bladder sensation and I have not been able to feel the urge for a year or two by now. It sucks. Urine retention was bad and I had it at least every two days. Thank you for doing these vlogs. Makes me not feel alone. Feel better soon!
Seeing you cry brings tears to my eyes. Even though you are frustrated you still are strong and positive. You truly are a warrior. I hope you got some sleep sweetie.
Thank you for always being authentic and real in your videos. So sorry that yesterday was so frustrating., but I am glad to see that you have such a large support system to cheer you on along your healing journey. Thinking of you and sending lots of positive thoughts your way!
Your doing great.....a few tears is to be expected, just keep doing what you can do moment to moment, the moments all add up to success :) sometimes when I have problems peeing I talk to my bladder and tell it to do its thing that I trust it and it knows what to do, also some relaxing breath meditation could help .....the mind is a powerful tool ♡
As someone with autism I can’t imagine how difficult it must be for you to have no control over your body and your care :( You are extra strong getting through so much! And crying is a very good way to relieve that stress x Really hope that things start to look up soon, you so deserve them to ❤️
you almost made me cry seeing you in so much pain and so sad.... Im glad you have such a wonderful family and I hope you will get better very soon, you are so strong ! Gute Besserung and best wishes !!!
Jaquie love, do not think that it's not OK to get frustrated, or that you're not allowed to cry. Girl, if I had HALF of what you deal with on a daily basis, I'd be howling at the moon 24/7. Give yourself a break sweetie. Stay strong, we're all pulling for you.
I'm so sorry that you were having a rough day!! But you're still moving forward just like you said! The good news is rough days only last 24hrs. Then you get a new slate! Keep fighting Jacquie! -a fellow dysautinoma warrior
Sending you lots of love and prayers hun. Blessings my dear. One minute, one hour one day at a time. Make sure once you can pee... work those Keagle muscles. Having catheters can stretch us a bit. Sorry for the personal info but it’s truthfulness. The “Amazing Judd”! Hello darlin! What a treasure you are to Jaquie! It’s so refreshing to see you surrounded by a loving supportive family Jaquie! I know many chronically ill people whom’s family and doctors disbelieve their pain and problems. I’m blessed to have a supportive family. My heart goes out to those whom do not have this support. And I pray that you may find your golden doctor who does listen. It’s troubling to be a rare case. I finally found a doctor that listened about my malrotated kidney! Transverse malrotation to be exact. I’m finally getting my contrast vascular CT scan and a special vascular flow scan too. It took me 7 months to get a urologist appointment. In between I had seen a urologist which kept telling me no no no. You can have that. Was rude to me about my experience and explanation of things within my system and problems and pain. I fired him immediately! He looked shocked! I chucked and said my goodness you’re not the only doctor out there. You don’t want a rare case tell me. But don’t laugh at me and tell me I don’t know what I’m talking about. I’ve suffered with this my whole life. After my sons birth, which I swelled from 104-232lbs. I couldn’t handle the amniotic fluid and my own because the rotated kidney couldn’t keep up with filtration. And just one kidney makes stones so it’s not an oxalate problem. My utter is at the top of my kidney and the utter line goes around my kidney and I am constantly making stones in just that kidney. The pain and pressure has gone from tolerable to barely being able to walk. If I do force myself at a family function or outing I’m out of commission for days after. I asked before he got cocky with me... to please work with a urologist to find my problems and I know what direction to lead him towards. This of course upset him. I could care less! I’ve learned if you know deep down what is going on. Keep searching! My new urologist immediately knew where my “transverse malformed malrotated kidney was. Under my ribs. Listened about my history my surgeries my problems with the doctors saying I don’t know why and releasing me or me firing them because of being told no that can’t happen. When it obviously does! He said instantly OMG yes! I fear you have Nutcrackers Syndrome and SMAS issues... and pelvic congestion along with lack of blood flow to my left bowels. He was very upset with the lack of knowledge and attitude so many other doctors have given to me. Finally! I found my golden Dr! I had my consultation yesterday and on the first we start the find the needle in the haystack! I didn’t Pursue my pelvic congestion. I explained my urologist I have read and many studies and there are a few patients here in the US that have taken care of their pelvic congestion before nutcracker syndrome. This causes a really bad a fact because there’s nowhere for the blood to go and it’s forcing back up into their spine causing neurological effects. My urologist told me, “smart studying my dear!” “Yes!” You’re absolutely right! That he will help me aline the appropriate appointments if we find Nutcrackers. Because there is more trouble with my system if this is in-fact what I have. And he said I’m 99% sure you in fact do have this. So keep positive and keep looking for someone who will listen! Jaquie you have the most wonderful team of doctors that support you! This is such a blessing! As you are blessed with those that love you so much! Hugs hunny. Sooner than later you will feel right as rain. I believe deep down I will too! Hunny I suggest getting ear plugs. I can only tolerate the moldable type because my ears are so tiny. By they help so much when you need a little silence. They are made of a moldable silicone. Hugs hun. Aw.... big hugs!!!
I hear ya... When I had a laparoscopic removal of my gall bladder years ago, they “traumatized” my bladder. I was cathed for almost three days to let my bladder “calm down”. The catheter wasn’t bad, but turning a day surgery into a four day stay seriously stank! My bladder did finally start working again...but ever since I’ve been much more aware of my urination (as weird as that sounds).
I am fairly new to your Channel but I have to say you have been a blessing that has come in to my life right when I needed it the most because you are so postive and caring but it's ok to brake down just never give up your doing a great job and you will make it through this but never be afraid are embarrassed to break down it's a normal thing especially in the hospital cuz it's so frustrating there. I'm now on my 4th year of have gastroparesis and fibromyalgia and it has been one hell of a ride and it seem like everytime they try something new I'm allergic to it so I understand your frustration. You have made me feel not so alone in this fight so thank you. I also live in Florida . I'm in the jacksonville area . BTW I love your intro where your dogs eyebrows lift up it is like the cutest thing I've ever seen . Anyways my thoughts and prayer are with you and all who are taking care of you. And thank you for sharing your life with the world it's people like you that help get the world to see the truth about gastroparesis and other illnesses you are a true blessing . I hope you have a fast recovery and ever thing works right . Sending you soft hugs.
Your support system is fantastic and the positivity you have is amazing. This will go well once your medicines and peeing issues are all figured out! I’m thinking of you, your family, your friends, and Harlow.
Your videos are always so educational and if I could take some of the pain and difficulty away from you, I would. Something that helps me when I have a hard time is the serenity prayer. My uncle used that when he was recovering from his addiction which ultimately took his life. It's a big comfort for me in a lot of situations. I'll copy-paste it here below just in case it helps give you strength and courage: God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference. I hope things get better soon! Much support and love
I've just found your video and have just sent you healing vibes. You are a very brave girl. All I can say is stick with it and stay as positive and as hopeful as possible. The mind affects the body more than most people think.
Oh, my goodness! I'm so sorry you are struggling so much! The good news with not being able to pee is that, well, there is pee! Your Kidneys are functioning! Hopefully, today is a better day. I have had this issue after surgery, but not to this extent. Forgive me if I am wrong, but doesn't Delaudid slow down your system? Could it be counter-intuitive to try to wake up your bladder? Just something to think about. If it were me, I would stay on the pain meds and be cathed, rather than trying to come off of the pain meds too soon. Prayers and Hugs!!!
Judd is the best. Harlow looked like he was staying for good. The flowers are beautiful. And, I am so sorry you are having these problems, sadly I know how you feel, right down to the catheter. So, more prayers for you all
They're not even directed at me and this comment section is so uplifting and empowering. An amazing audience for an amazing person! Very literally amazing in and of itself.
Jaquie you look like you're going through so much at the hospital. I can't even imagine everything going on all the pain and you can't pee etc etc. I just watched this vlog and I was crying just feeling bad that you have to go through so much. But one thing about you you always keep moving forward which is amazing literally amazing get well quickly and bye for now
This was hard to watch. Bless your heart dear girl. I'm praying for relief soon from all your troubles. I'm glad Harlow, Judd and your Mom were with you.
I’m so sorry Jaq. I will give you all my spoons today! Keeping you in my thoughts and prayers. I hate when I can’t pee... horrible horribly frustrating feeling
Day three in the hospital is always the toughest. All the optimism gives way to frustration. It's ok to be frustrated, but this too shall come to pass. You are eternally optimistic!
Many prayers, this made me cry. I really hope you start to get relief Jaquie!! If I could take your pain I would! 😯 So much live and positive prayers and thoughts coming your way! Your a trooper!!! You got this!
Hi Jaqueline can I say that you are a true inspiration to so many people. I also wanted to say to hang in their as I too was unable to pee after general anaesthetic and I ended up sadly being diagnosed with a condition called ‘Fowler’s Syndrome’, basically damage to nerves of my bladder that occurs to young women who have surgery, anaesthetic or after childbirth, and basically we suddenly go into complete urinary retention and unable to pee, and rely on catheterisation to empty the bladder etc. I truly hope your bladder starts to work again soon but if it doesn’t then please do look up this condition ‘Fowler’s Syndrome’ as many people like myself have pots and EDS and gastroparesis etc. and we all have Fowler’s Syndrome as well, this bladder dysfunction seems to connect with the whole dysautonomia/EDS conditions we have. I really do hope your body recovers from all of this as you truly deserve to get home and live a long, happy, relatively stress free life, as you so truly deserve happiness, as I really feel you are truly awesome at how you cope with things each day. Your husband is amazing and is your rock (the love you share truly shows and is just so precious to see how sweet you are together, you and your husband are so made for each other, you are a perfect couple) and your husband really makes me laugh so much as he’s just so sweet, funny, and a true gentleman. Sending you heaps of her well wishes your way. Do you have a mailbox address that I can post something to you that I feel you will really love I also want to send hippo something too.
Hang in there Jaquie. My GP is progressing. I had testing done that does not usually D.C. Gastroparesis but they could tell I had delay because the liquid was taking a long time to get where it needed to be to complete the test. My New GI has said that I may need to go to the closest doctor who handles GP cases and get evaluated for the gastric stimulator. However feeding tube has also been discussed. GP is no fun. Sorry you are not doing great right now. Sending hugs.
You can flush your tube with COLD water??? I can't even flush mine with room temperature water without feeling like I'm filling my chest with fire. It has to be really warm for it to not hurt
Megan Smithers your tube may be in a different place,Jaquies is in her intestine(jejunum,J-tube)so she shouldn't feel much of anything,unlike a g tube,which is in your stomach and you can feel everything..I've had a g-tube and yah cold water=pain and full feeling
I feel so bad for you...my heart breaks for you...I am so sorry you are going through all this....I hope in the long run this will be the best solution for you...you have start screaming “NO MORE PAINNNNNN”....yes saw your last video and how your mom has your cow outside....lol...sending thoughts,prayers,healing vibes,love and HUGE hugs...from one spoonie to another spoonie...take care of YOU!!!...love from very cold NY❤️💋
I had the same thing after anesthesia....I couldn’t pee either. I requested to be catheterized. Once that was situated, the feeling of relief was like winning the lottery. As soon as the anesthesia wore off, they removed it.
Vertigo Bear I had to have emergency surgery for a infection and everything was happening so fast and soon as I woke up it was horrible with the feeling of needing to pee but not being able to. It took about a day and a half which was terrible since I was on bags of fluids and antibiotics but luckily I wasn't cathed. I have dysautonomia and with it I really never have to pee and man, I hope to never have to feel that ever again! I'll take the infection and all my heart issues over any bladder issues! Lol
You are brave and strong to be going thru all this and not get aggravated. You are keeping your cool and I admire you for that! Okay now for my silly question..... Why do you call Harlow "Hippo"?
I know it’s super frustrating and miserable that your bladder isn’t working on top of everything else, so I just wanted you to know that it happens to me every time that I have surgery. It takes my bladder awhile to wake up too :(( so you’re not alone. hang in there it will get better. I hope you don’t need to keep getting straight cathed cause that caused me to get a bladder infection then,. Praying for you!
Ohhh my heart seeing you this sad and in pain. You will get through it though. I'm so glad Judd and Harlow came to visit sometimes the best care comes from the heart.... Cheering for you babes Brooke & Service dog Shelby
Stay strong! You are going to be ok, just keep being brave. This is good for you, it's a benefit for the future. You have alot of support, I'm praying for you, your not alone in this.
I know those spasms are horrendous, get them in my spine alot. I was thinking...maybe Judd bringing in your ear muffs/headphones...maybe that would help to muffle the sounds. And yes, when I had my heart problems in the ICU, I couldn't pee or poo either and yet I had pain in my bladder so bad but kept trying to go to bathroom and finally they had to put me in a diaper. REally upset me but at least I was able to get the pee going a little bit....Hang in there kiddo, you can rise above but tears are there for a reason, they help to release the frustration and pain.
You are a VERY strong person your videos help me through a lot I have hydrocephalus which is fluid. On the brain and had my first shunt when I was one day old and then i had about 17 more From them breaking and cloging
Jaquie ~ So sorry for what you're going through. It breaks my heart to see you suffering in pain, and having different health problems. I hope and pray that you can feel better soon, and be able to go home. Glad you have your Mom and Judd and Harlow to help you and be with you. Love ya ! :o)
"the sound of our people!" Yes! My nurses showed me how to silence mine for a little bit when the cord was kinked. Maybe you could have some control over that care by calling them when the pump beeps and silence it until they stop in. Maybe Judd could could help if you can't reach it. My thoughts are with you.
Sorry you are struggling so much, Jaquie. My J tube surgery was rough, too. So nice that you've got Harlow by your side to help you feel better! Curious to know, how much do you currently intake orally?
Seeing you cry just breaks my heart. I'm so sorry things aren't going that well with your bladder. Sometimes you need to let it out and its okay! Things will get better!
Melissa Michelle h
No need to apologize for tears, Jaquie. It's how we express frustration and stress. And pain and allergic reactions can bring out the those reactions too. I had the "can't pee" thing after one of my surgeries, super painful! Praying for a speedy recovery. Hug your hippo!
Jacquie, I was crying with you. I know how frustrating being in the hospital can be and your body not wanting to do what it's suppose to. I spent 5 months in the hospital from September through February. It sucked, but I was there because thats where I needed to be. Hang in there and know there are a lot of people praying for you and sending you good vibes. Love you!!
i hope you're feeling better Jacquie! it's heart breaking to see you in so much pain, Judd is so sweet
Your bladder is stubborn, but it will go back to work in a few days, never you fear. My husband had back surgery a couple years ago, and he had to have a catheter for 10 days, but then everything was fine. I’m sorry you’ve been frustrated; being in the hospital really is tough, but you have a great support system, and you are a strong woman. Good luck dear.
Rest in peace, dear angel! ♡♡♡
I've been praying for you since the day of the surgery. Will keep on doing so + sending you healing vibes. Remember it's okay to cry and be frustrated. Also remember that you are so brave and you will keep moving forward. Lots of love
I'm so sorry for your pain! I pray you get better soon! You are so strong!!!! My mom has Cidp and many autoimmune disease and it's so sad all the complications that's happen. My mom was on IVIG but doesn't do it now because it does not do much for her. She is in pain everyday and in bed :( it breaks my heart that you go through this and her. I pray for good health for you! You are extremely strong!
CIDP is an awful disease. I have it and like your mom a host of other autoimmune diseases. I also had to stop my IVIG and am now taking Chemo for control of some of the diseases and it also helps to some degree with the CIDP. Without it, I was completely bed bound as well. Prayers for your mom and for you.
Stay strong💜🥄💜🦄💜
Praying for a speedier recovery for you. May God lessen your pain and discomfort. Thank God for your hubby and your Mama and of course Harlow.
Just let the tears of frustration out. Let your body get the stress out, even if it feels like beeing weak. You will be up and on a new adventure in no time. We all pray and light candles for you!!
You have such an amazing support system and your positivity is awesome! Stay strong and keep fighting!
I'm so so sorry you are struggling so much. I know I have at least one surgery coming up, and I worry about pain management and mast cell reactions as well. It sounds like you have an amazing team to medical professionals who are working hard to help you get through these head days. Praying for you!
I had surgery and it took almost 48 hours for me to go. Hang in there. The frustration is real. Hugs.
You got this Jaquie! We’re all praying for you and supporting you. Youre so strong, just keep moving forward!
I have neurogenic bladder and after my surgeries I have to have a Cath for days. 3 days after my back surgery, it finally woke up. Hang in there!
I swear Harlow knows exactly what’s happening because she being so careful around you! I’m keeping you in my prayers!👍
Sending all the love and well wishes to you Jaquie! Praying for the best for you during this difficult recovery. You have such an amazing family who loves and supports you, and also your UA-cam followers are rooting for you!! also, HAD to tell you, that in the middle of this video, I got a text saying I got ACCEPTED to my #1 choice college!!! AAAAAAA
We love u jaq. Ur really tough. Everything will be ok. Just breath. One step at a time. Awww... Look at hippo. She knows that ur in pain, so she's not happy. Don't worry, Orion will come.
Seeing you in so much pain hurts my heart, but it’s amazing how you truly show us the good and the bad that comes with chronic illness. You are a fighter. You are a warrior. Sending all my love and thoughts for recovery and happiness ✊🏻💓
Crying right along with you in the video! I’m so sorry you’re having such a hard time. Hopefully the next few days will just be better, and better. Praying for your comfort. You have such an amazing family! I’m so glad you and your Mom are playing Trouble! You do have such a great support system in your in-laws, husband and Mom, I’m so glad to see it.
BABE. Please please please keep your head up. It breaks my heart to see you cry because I KNOW how strong you are. Your body is going through so much right now and you are doing so amazing! Be patient with yourself, please. You are such a beautiful human being and I know you can get through this.
“Keep moving forward”. 💓💖
We love you.
Jaquie, PLEASE do not apologize for getting upset.! You are allowed......between the surgery, the reactions, the pain, the spasms, etc., you have every right to have a meltdown every now and then. please don't feel that you "have to" only show us only your positive attitude (which is great by the way!) but you're allowed to be human too! I know you get tons of advice that you don't ask for but I think its because we all care for you and your family so much, we would like to offer any help we can. on that note: I too, suffer 24/7, 365 muscle spasms and after 11 years of on and off pain meds, muscle relaxers, etc., this month we tried something new----clonazepam, or Clonipan is the generic I think. anyway, for the first time in 11 years, my pain med intake has been cut in half and I am continuing to use less and less pain meds! This, after 11 years of non-stop pain! It has also helped with the sometimes off-the-wall anxiety that creeps up out of nowhere. and I'm on the lowest dose! I'm not saying this would work for you becuase each of us metabolize meds differently, but after a year of Ativan---which kind-of helped a little, I now have a few hours and sometimes, even most of the day, my spasms have been minimal! It is a Benzodiazepine but in small doses like mine, .05, the addiction factor is almost zero and your fantastic team of caregivers will ensure you get it just for the amount of time that is needed.
Again, sorry for putting my two-cents in when you didn't ask for it, but please understand, it's only a suggestion to discuss with your team, and it's only because we (me and my Service Dog, Bodhi) care and dislike seeing anyone we care about in pain.
Oh, and I think your mom cheats at Trouble! Lol's......no one can possibly win as much as she does! I think I can speak for most of us of how happy we are what a great support system you have!
Blessings to you, Judd, Harlow, and Mom!
It is heartbreaking to see you cry. But we all have our overwhelming moments and i know you keep looking forward. Keep strong! We are all cheering you on!!
I know how you feel:( I can’t pee off and on for months almost a year and feeling like I have a bladder infection when I did actually go pee. It’s hard my doctor are still trying to figure out but your videos help me so much by seeing others going through similar problems
Sending you get well wishes! When I was in the hospital I actually heard "hospital" noises so much that I eventually was able to block them out! Man, those noises were aggravating as heck! though! One step is still a step! Best wishes!
here is to a speedy recovery love u Jaqice
Jaquie
Jaquie hang in there! You will get better! Your in the thick of it right now but there is a light at the end of the long tunnel! And though it may be long God is holding your hand every step of the way! I know it is so hard to have hope Ive got anxiety and it’s hard to see hope but it is there! Don’t let your symptoms get you down! I will be praying for a speedy recovery!❤️😘
Jaquie you are so strong, and some times cry is a strong action too! Being able to vent out some frustration crying helps so much! And so happy you have a supportive family and doctors!
Praying for you! I have multiple health issues and had multiple surgeries as well! I know a little what your going through. You are a trouper, stay positive as you always do!!!
Get well soon. 🤗🤗🤗 My heart goes out to you. Spreading healing thoughts from Wellsville, NY. ❤️
Ay Jay! So sorry! This happened to me with the peeing scenario:( my bladder had a difficult time getting up:( I am praying for you!! Xoxo Blessings!
I wanted to cry! I have been there...I am SO glad they finally LEFT the darn catheter in instead of repeating the darn thing over and over. Let things "wake up" naturally and on their own time without making you worry in the meantime. Another few days and you'll see some big improvements. Abdominal surgery is (in my opinion) the WORST!!!
Oh Jaquie hope you get a fast recovery love u
You're very strong, sad to see you so upset but i can understand why its frustrating *lots of hugs* you can push through this you know this and say it =3 hope you heal safe and fast
Aww Jaquie!!! I’m so sorry this has been so difficult but I’m the end it will be worth it! Despite being in pain and being frustrated, you have such a strong willingness to get better and focus on the positive and that is so admirable!!! Love you!! Praying for you!
I hope by now your bladder has started working for you but just incase I figured I would share my story. I had abdominal surgery on the 9th (not as extensive as yours) and my bladder didn't work either. My doctor explained to me about some organs might have trouble waking up after general anethesia like you said but he also told me that with the pain and trama to the abdominal muscles it's possible that your muscles are really tense and can't relax enough to release the pee. They tried muscle relaxers on me and I was able to go a little bit but what actualy got me to be able to fuly drain my bladder was getting my pain under control. As soon as we found the right medicine I got onto that commode and peed like I hadn't in years. I know it's frustrating and one more thing to deal with while trying to recover but it will pass. Hope you start feeling better soon!
I have dysautonomia too that was caused by my celiac disease which was diagnosed about 2 years ago. The dusautonomia affected my bladder sensation and I have not been able to feel the urge for a year or two by now. It sucks. Urine retention was bad and I had it at least every two days. Thank you for doing these vlogs. Makes me not feel alone. Feel better soon!
first off, you are sooo strong and second sending you healing vibs and third Jud is sooo good , he is a blessing
Seeing you cry brings tears to my eyes. Even though you are frustrated you still are strong and positive. You truly are a warrior. I hope you got some sleep sweetie.
Thank you for always being authentic and real in your videos. So sorry that yesterday was so frustrating., but I am glad to see that you have such a large support system to cheer you on along your healing journey. Thinking of you and sending lots of positive thoughts your way!
Your doing great.....a few tears is to be expected, just keep doing what you can do moment to moment, the moments all add up to success :) sometimes when I have problems peeing I talk to my bladder and tell it to do its thing that I trust it and it knows what to do, also some relaxing breath meditation could help .....the mind is a powerful tool ♡
As someone with autism I can’t imagine how difficult it must be for you to have no control over your body and your care :( You are extra strong getting through so much! And crying is a very good way to relieve that stress x Really hope that things start to look up soon, you so deserve them to ❤️
not gonna lie, i teared up seeing you cry. best wishes to you, and i hope things start to get a bit better from here. x
you almost made me cry seeing you in so much pain and so sad.... Im glad you have such a wonderful family and I hope you will get better very soon, you are so strong ! Gute Besserung and best wishes !!!
Jaquie love, do not think that it's not OK to get frustrated, or that you're not allowed to cry. Girl, if I had HALF of what you deal with on a daily basis, I'd be howling at the moon 24/7.
Give yourself a break sweetie. Stay strong, we're all pulling for you.
Hang in there girl! We are praying for you!
Praying for easier hospital days and a quick recovery for you Jacquie!
I'm so sorry that you were having a rough day!! But you're still moving forward just like you said! The good news is rough days only last 24hrs. Then you get a new slate! Keep fighting Jacquie! -a fellow dysautinoma warrior
Sending you lots of love and prayers hun. Blessings my dear. One minute, one hour one day at a time.
Make sure once you can pee... work those Keagle muscles. Having catheters can stretch us a bit. Sorry for the personal info but it’s truthfulness. The “Amazing Judd”! Hello darlin! What a treasure you are to Jaquie! It’s so refreshing to see you surrounded by a loving supportive family Jaquie!
I know many chronically ill people whom’s family and doctors disbelieve their pain and problems. I’m blessed to have a supportive family. My heart goes out to those whom do not have this support.
And I pray that you may find your golden doctor who does listen. It’s troubling to be a rare case. I finally found a doctor that listened about my malrotated kidney! Transverse malrotation to be exact. I’m finally getting my contrast vascular CT scan and a special vascular flow scan too. It took me 7 months to get a urologist appointment. In between I had seen a urologist which kept telling me no no no. You can have that. Was rude to me about my experience and explanation of things within my system and problems and pain. I fired him immediately! He looked shocked! I chucked and said my goodness you’re not the only doctor out there. You don’t want a rare case tell me. But don’t laugh at me and tell me I don’t know what I’m talking about. I’ve suffered with this my whole life. After my sons birth, which I swelled from 104-232lbs. I couldn’t handle the amniotic fluid and my own because the rotated kidney couldn’t keep up with filtration. And just one kidney makes stones so it’s not an oxalate problem. My utter is at the top of my kidney and the utter line goes around my kidney and I am constantly making stones in just that kidney. The pain and pressure has gone from tolerable to barely being able to walk. If I do force myself at a family function or outing I’m out of commission for days after.
I asked before he got cocky with me... to please work with a urologist to find my problems and I know what direction to lead him towards. This of course upset him. I could care less! I’ve learned if you know deep down what is going on. Keep searching!
My new urologist immediately knew where my “transverse malformed malrotated kidney was. Under my ribs. Listened about my history my surgeries my problems with the doctors saying I don’t know why and releasing me or me firing them because of being told no that can’t happen. When it obviously does!
He said instantly OMG yes! I fear you have Nutcrackers Syndrome and SMAS issues... and pelvic congestion along with lack of blood flow to my left bowels. He was very upset with the lack of knowledge and attitude so many other doctors have given to me.
Finally! I found my golden Dr! I had my consultation yesterday and on the first we start the find the needle in the haystack!
I didn’t Pursue my pelvic congestion. I explained my urologist I have read and many studies and there are a few patients here in the US that have taken care of their pelvic congestion before nutcracker syndrome. This causes a really bad a fact because there’s nowhere for the blood to go and it’s forcing back up into their spine causing neurological effects. My urologist told me, “smart studying my dear!” “Yes!” You’re absolutely right! That he will help me aline the appropriate appointments if we find Nutcrackers. Because there is more trouble with my system if this is in-fact what I have. And he said I’m 99% sure you in fact do have this.
So keep positive and keep looking for someone who will listen!
Jaquie you have the most wonderful team of doctors that support you!
This is such a blessing! As you are blessed with those that love you so much!
Hugs hunny. Sooner than later you will feel right as rain. I believe deep down I will too!
Hunny I suggest getting ear plugs. I can only tolerate the moldable type because my ears are so tiny. By they help so much when you need a little silence. They are made of a moldable silicone. Hugs hun. Aw.... big hugs!!!
The good days will come, just hold on to your loved ones and you'l get through this.
I hear ya... When I had a laparoscopic removal of my gall bladder years ago, they “traumatized” my bladder. I was cathed for almost three days to let my bladder “calm down”. The catheter wasn’t bad, but turning a day surgery into a four day stay seriously stank! My bladder did finally start working again...but ever since I’ve been much more aware of my urination (as weird as that sounds).
Shannon Landis ...thanks for sharing. I'm avoiding gallbladder surgery. Now even more! Lol.
I am fairly new to your Channel but I have to say you have been a blessing that has come in to my life right when I needed it the most because you are so postive and caring but it's ok to brake down just never give up your doing a great job and you will make it through this but never be afraid are embarrassed to break down it's a normal thing especially in the hospital cuz it's so frustrating there. I'm now on my 4th year of have gastroparesis and fibromyalgia and it has been one hell of a ride and it seem like everytime they try something new I'm allergic to it so I understand your frustration. You have made me feel not so alone in this fight so thank you. I also live in Florida . I'm in the jacksonville area . BTW I love your intro where your dogs eyebrows lift up it is like the cutest thing I've ever seen . Anyways my thoughts and prayer are with you and all who are taking care of you. And thank you for sharing your life with the world it's people like you that help get the world to see the truth about gastroparesis and other illnesses you are a true blessing . I hope you have a fast recovery and ever thing works right . Sending you soft hugs.
Your support system is fantastic and the positivity you have is amazing. This will go well once your medicines and peeing issues are all figured out! I’m thinking of you, your family, your friends, and Harlow.
Your videos are always so educational and if I could take some of the pain and difficulty away from you, I would. Something that helps me when I have a hard time is the serenity prayer. My uncle used that when he was recovering from his addiction which ultimately took his life. It's a big comfort for me in a lot of situations. I'll copy-paste it here below just in case it helps give you strength and courage:
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.
I hope things get better soon! Much support and love
I've just found your video and have just sent you healing vibes. You are a very brave girl. All I can say is stick with it and stay as positive and as hopeful as possible. The mind affects the body more than most people think.
Oh, my goodness! I'm so sorry you are struggling so much! The good news with not being able to pee is that, well, there is pee! Your Kidneys are functioning! Hopefully, today is a better day. I have had this issue after surgery, but not to this extent. Forgive me if I am wrong, but doesn't Delaudid slow down your system? Could it be counter-intuitive to try to wake up your bladder? Just something to think about. If it were me, I would stay on the pain meds and be cathed, rather than trying to come off of the pain meds too soon. Prayers and Hugs!!!
I feel so bad that you're frustrated! It's so heartbreaking to see you in pain! Stay strong! we are rooting for you!
I’m so sorry you’re having to go through all this. I hope you feel much better soon. You are amazing and one tough woman! I’ll be praying for you! :)
Judd is the best. Harlow looked like he was staying for good. The flowers are beautiful. And, I am so sorry you are having these problems, sadly I know how you feel, right down to the catheter. So, more prayers for you all
They're not even directed at me and this comment section is so uplifting and empowering. An amazing audience for an amazing person! Very literally amazing in and of itself.
"There's so much room for activities!!!" lmao my best friend and I always say that whenever we're in larger rooms
Jaquie you look like you're going through so much at the hospital. I can't even imagine everything going on all the pain and you can't pee etc etc. I just watched this vlog and I was crying just feeling bad that you have to go through so much. But one thing about you you always keep moving forward which is amazing literally amazing get well quickly and bye for now
This was hard to watch. Bless your heart dear girl. I'm praying for relief soon from all your troubles. I'm glad Harlow, Judd and your Mom were with you.
I’m so sorry Jaq. I will give you all my spoons today! Keeping you in my thoughts and prayers. I hate when I can’t pee... horrible horribly frustrating feeling
Day three in the hospital is always the toughest. All the optimism gives way to frustration. It's ok to be frustrated, but this too shall come to pass. You are eternally optimistic!
Many prayers, this made me cry. I really hope you start to get relief Jaquie!! If I could take your pain I would! 😯 So much live and positive prayers and thoughts coming your way! Your a trooper!!! You got this!
Well wishes. I hope you feel better soon. Praying for you.
Judd is such a good husband! I know you’re prob not reading these comments today, but I hope you’re feeling better soon!
Remember slow and steady wins the race. Stay strong and let your body heal at its own pace, I hope you feel better!
Hi Jaqueline can I say that you are a true inspiration to so many people. I also wanted to say to hang in their as I too was unable to pee after general anaesthetic and I ended up sadly being diagnosed with a condition called ‘Fowler’s Syndrome’, basically damage to nerves of my bladder that occurs to young women who have surgery, anaesthetic or after childbirth, and basically we suddenly go into complete urinary retention and unable to pee, and rely on catheterisation to empty the bladder etc. I truly hope your bladder starts to work again soon but if it doesn’t then please do look up this condition ‘Fowler’s Syndrome’ as many people like myself have pots and EDS and gastroparesis etc. and we all have Fowler’s Syndrome as well, this bladder dysfunction seems to connect with the whole dysautonomia/EDS conditions we have. I really do hope your body recovers from all of this as you truly deserve to get home and live a long, happy, relatively stress free life, as you so truly deserve happiness, as I really feel you are truly awesome at how you cope with things each day. Your husband is amazing and is your rock (the love you share truly shows and is just so precious to see how sweet you are together, you and your husband are so made for each other, you are a perfect couple) and your husband really makes me laugh so much as he’s just so sweet, funny, and a true gentleman. Sending you heaps of her well wishes your way. Do you have a mailbox address that I can post something to you that I feel you will really love I also want to send hippo something too.
I’m so sorry you had a rough day Jaquie!! KEEP MOVING FORWARD! You got this girl 💪 You will defeat this obstacle!
Did any of you notice that Judd was crying?😿he's such a good man xoxo
I HAVE SO MANY QUESTIONS, from one hospital pro to another, but I won't annoy you with them. You're a rockstar.
Hang in there Jaquie. My GP is progressing. I had testing done that does not usually D.C. Gastroparesis but they could tell I had delay because the liquid was taking a long time to get where it needed to be to complete the test.
My New GI has said that I may need to go to the closest doctor who handles GP cases and get evaluated for the gastric stimulator. However feeding tube has also been discussed. GP is no fun. Sorry you are not doing great right now. Sending hugs.
You can flush your tube with COLD water??? I can't even flush mine with room temperature water without feeling like I'm filling my chest with fire. It has to be really warm for it to not hurt
Megan Smithers your tube may be in a different place,Jaquies is in her intestine(jejunum,J-tube)so she shouldn't feel much of anything,unlike a g tube,which is in your stomach and you can feel everything..I've had a g-tube and yah cold water=pain and full feeling
im so sorry jaquie, wishing you the best. so sorry your bladder isnt working :I
I feel so bad for you...my heart breaks for you...I am so sorry you are going through all this....I hope in the long run this will be the best solution for you...you have start screaming “NO MORE PAINNNNNN”....yes saw your last video and how your mom has your cow outside....lol...sending thoughts,prayers,healing vibes,love and HUGE hugs...from one spoonie to another spoonie...take care of YOU!!!...love from very cold NY❤️💋
I am sorry to hear that everything is not going good. I will still pray for you hang in there.
I had the same thing after anesthesia....I couldn’t pee either. I requested to be catheterized. Once that was situated, the feeling of relief was like winning the lottery. As soon as the anesthesia wore off, they removed it.
Vertigo Bear
I had to have emergency surgery for a infection and everything was happening so fast and soon as I woke up it was horrible with the feeling of needing to pee but not being able to. It took about a day and a half which was terrible since I was on bags of fluids and antibiotics but luckily I wasn't cathed. I have dysautonomia and with it I really never have to pee and man, I hope to never have to feel that ever again! I'll take the infection and all my heart issues over any bladder issues! Lol
Vertigo Bear How long did it take for the anesthesia to wear off and take out the catheter? Can you pee normally now? This scares me...
You are brave and strong to be going thru all this and not get aggravated. You are keeping your cool and I admire you for that! Okay now for my silly question..... Why do you call Harlow "Hippo"?
I know it’s super frustrating and miserable that your bladder isn’t working on top of everything else, so I just wanted you to know that it happens to me every time that I have surgery. It takes my bladder awhile to wake up too :(( so you’re not alone. hang in there it will get better. I hope you don’t need to keep getting straight cathed cause that caused me to get a bladder infection then,. Praying for you!
Ohhh my heart seeing you this sad and in pain. You will get through it though. I'm so glad Judd and Harlow came to visit sometimes the best care comes from the heart....
Cheering for you babes
Brooke & Service dog Shelby
Aww Jacquie I'm so sorry you're having a hard time. I hope your bladder wakes up soon and you heal quickly!
Prayers for a smoother recovery Jaq! Sorry it's difficult now but it will get better. Praying
Stay strong! You are going to be ok, just keep being brave. This is good for you, it's a benefit for the future. You have alot of support, I'm praying for you, your not alone in this.
I know those spasms are horrendous, get them in my spine alot. I was thinking...maybe Judd bringing in your ear muffs/headphones...maybe that would help to muffle the sounds. And yes, when I had my heart problems in the ICU, I couldn't pee or poo either and yet I had pain in my bladder so bad but kept trying to go to bathroom and finally they had to put me in a diaper. REally upset me but at least I was able to get the pee going a little bit....Hang in there kiddo, you can rise above but tears are there for a reason, they help to release the frustration and pain.
You are a VERY strong person your videos help me through a lot I have hydrocephalus which is fluid. On the brain and had my first shunt when I was one day old and then i had about 17 more From them breaking and cloging
My heart hurt watching you cry but I understand how frustrating it can be when your body isn't cooperating. I hope things turn around for you soon ❤
Jaquie ~ So sorry for what you're going through. It breaks my heart to see you suffering in pain, and having different health problems. I hope and pray that you can feel better soon, and be able to go home. Glad you have your Mom and Judd and Harlow to help you and be with you. Love ya ! :o)
Awwww Jaquie I'm so sorry you are having such a hard time. Continued prayers sent your way.
I am honestly so proud of you and everything that you have accomplished. I sincerely hope that you feel better quickly and get well soon.
"the sound of our people!" Yes! My nurses showed me how to silence mine for a little bit when the cord was kinked. Maybe you could have some control over that care by calling them when the pump beeps and silence it until they stop in. Maybe Judd could could help if you can't reach it.
My thoughts are with you.
Judd is just so sweet to u.I love u guys.and I'm praying for u everyday get better soon!
We're with you, honey
Praying you heal quick.
Feel better soon, girl!! Praying for you!
Sending prayers and positive vibes your way. You're gonna get through this! Keep moving forward, Jaquie!!
I’m so sorry you’re going through this. 💔 I really hope you get better soon.
Praying for you ...hope you feel better
Sorry you are struggling so much, Jaquie. My J tube surgery was rough, too. So nice that you've got Harlow by your side to help you feel better!
Curious to know, how much do you currently intake orally?