I just discovered your vlog today. You are extremely well spoken and very knowledgable! I guess you have to be just to manage your chronic illnesses. I tell my husband all the time it is a full time job to manage my chronic illness. Anyhow, I look forward to following your blog. Feel well!
I'm so glad your nerve block went ok Jaquie! When I saw the title I got nervous. I had a nerve block done on my occipital nerves and omg I fully blacked out from pain and had tears streaming down my face before blacking out. Turns out I had incredible amounts of damage for someone my age (17), so that's why it was so painful! I've now had a major surgery to try and fix or at least help my chronic daily migraines, that we believe were being caused by an illness called occipital neuralgia. I'm glad you, Judd, and Harlow get to spend time with family over the next few days! 😊 xxxx
Elisabeth fuckkkkkkkk I’m getting that nerve block in 6 hours I have I Occipital neuralgia. I’m going to a spine and rehabilitation doctor that all day every day does injections. I’ve been told with him I won’t feel much to anything but now I have your experience in mind... I’m scared shitless
I had a terrible experience with nerve blocks so I had to fast forward through most of that but I'm so proud of you for overcoming your fears and being flexible with the new plan your doctor recommended. Fingers crossed the relief continues! :)
Found your vlogs yesterday... thank you for sharing this journey! when we lived in New Mexico we were told to move close to the Mayo Clinic to have a chance of survival. SO the specialists for her were all here in Minnesota, so that's how we ended up here. She deals with some of the same things as you do, as well as the syncope, standing up too quickly is a bad thing for her.
I'm just a normal kid and I want to say that you handle illnesses so well. I couldn't even imagine it, as I cry when I get a normal cold. My sister has autism and there's so much she's good at. So I wish the absolute best for you in the future.
I have had this exact same procedure for MGs & degenerative neck disease. I had to have a disc replaced in my neck after it ruptured a few years ago.(Very awful experience as it was excruciating pain b4 & right after surgery till they leveled me out) I continue to get pain management plus I have RF treatments (cervical facet radio frequency neurotomy) instead of the blocks. This works for a longer time by shocking the nerves on each side instead of just numbing them. I also have built up scar tissue & inflammation in those areas. My neck & shoulders tighten & its difficult to sleep, travel, etc... When I get the RF's done it relieves the tension, my shoulders drop & it last a few months each time. Just thought I'd share this with you as you may run into this in the future. God Bless you always in all ways! Shalom
Jaquie Blake Thank you so much! And thank you for your vlogs! Your positivity is inspiring and so infectious! I love watching your adventures everyday ❤❤
To anyone considering occipital nerve blocks: 1. If you can, get one side done at a time. It's already disorienting enough with one shot! 2. Definitely stay laying down as long as they'll let you. Sit up in stages, and get help, especially if you have POTS. I get these with just lidocaine (which does nothing on me) and dextrose (no steroid), every 7 weeks to manage crazy headaches (occipital neuralgia). Been getting nerve blocks for a year now. The first was the worst because you're fighting so much inflammation but they are easier to get after that. I've had nerve blocks in other areas go completely sideways but in general definitely worth the gamble in case they do provide relief.
I get nerve blocks in my lower back (6-8 injections) every 4 months. I can't get the ablation due to my hypermobility from EDS, my pain specialist is an anesthesiologist and she's wonderful! I hope yours lasts that long too.
I've gotten Botox for TMJ/after disc dislocation surgery..caused by late bloomer jaw. Botox made me feel more fatigued and fluish for like 2-3 days. Not good w/ my ME/CFS immune dysfunction (either are steroids)...but really helped and needed for pain and tension. My neck goes out of place SO often!! It hurts and causes tension headaches, which I have chronic bouts of. I need to go to the chiropractor at least weekly...very frustrating. Goes out frequently at night.
It was so great to see this. Not many videos on Mayo Jacksonville. I am struggling whether or not I want to go to Mayo in Rochester for diagnosis or in Jacksonville. My only hang up is that Rochester was recently rated the best hospital in the country while Jacksonville didn't make the list at all (out of 20). We would be temporarily moving though to either location we chose and I just hate the cold!
Hello! I recently had the same nerve blockers as you. I got 6 needles around my whole head to help my 3 months of continous migraine/dizziness/weakness. (ive been pretty much bed ridden the whole time and can only walk with help). Unfortunately, they didnt help at all, so for me they werent 'worth it' haha. But they do feel very weird and sort of painful when the needles in. I hope you have a good and safe trip there!
I have a lot of pain with my neck & shoulders too from EDS ( my neck was hyperextending during surgery before dx & dislocated shoulder sleeping) am epidural in my c spine seems to help BUT what helps my shoulder area where you pointed at for pain at the end was cupping therapy, I haven't noticed a difference from acupuncture but I have with cupping!
Wow that neck treatment sounds like it could help my neck pain from fibromyalgia and migraines, I might ask my dr about whether it is an option. Also I love the funny faces Judd always pulls behind you when you are talking it always makes me laugh. You two are so cute and funny together I love how well he takes care of you. Well done at the hospital honey you did so well
I had an orthopedist tell me I had a collagen disorder but no ones ever actually tested me for anything because everyone's scared to test teenagers and I'm just really scared to ask someone to test me and just scared for my future with all my other illnesses
Sydney Hopp ye i've had stomach discomfort for about a yr now, its recently turned into stomach pain, i've been speculating its IBS buy im too scared to go to a doctor xD
I love your videos and how well trained Harlow is, I am currently looking into getting a puppy to train as an assistance dog and in the U.K. There's not many training programs, and if you could help give me some advice on things I would really really appreciate it. I'm so glad you have such great doctors and great treatment, here in the uk the kind of treatment you have is not available here in the U.K. (I don't know if it's possible to travel abroad for treatment but we so I could). Sending hugs and love from England 💕 x
Rolling With Hannah - Life with invisible illness Just like Nicole mentioned, I have videos regarding service dogs! Look for my service dog 101 video. Unfortunately I'm not familiar with UK laws or organizations/trainers so I can't really help you there. But the resources I mention in that video may be useful, one website I discuss is internationally based. I also have a training tutorial playlist!
Hey, Im a future assistance dog handler in England as well, there isn't much info on owner training and I didnt know we even could owner train until a few months ago. I'd advise you to check out the facebook page owner trained assistance dogs uk. Im sorry if you already knew this but I didnt and if I had I'd be future in the process of getting my dog right now.
Hi! I enjoy watching your vlogs as we struggle with similar issues. I am a fellow medical zebra and it is nice to see someone spreading awareness. Also side note, Ehlers-Danlos is pronounced AY-lers DAN-los. Its a common mistake, and I used to say the same thing until I researched it!
Just wondering if you know why you feel/hear cracking when the needle went through the inflammation? I had to get a cortisone shot, not sure if that's what you had, in my neck as well and I remember all of the cracking. I actually did pass out but it was from the anxiety of the needle coming out. It didn't work out too well for me but hopefully it works for you! Good luck!
I have had a picc line and had to travel while getting my meds, so I understand that struggle. You go through so much! You're so brave to even consider Botox! I would not!
Claire Elizabeth Blake my doc didn't say anything about the port, I was worried for no reason. I love my doc! And it took him a while to convince me to do the Botox, and I needed some coaxing for the nerve block too. It wasn't that bad!
Bob's has the best cajun boiled peanuts! But next time y'all come up that way check out Smoking' D's BBQ on the opposite corner! I grew up right down the road from there!
I love your videos, and can't wait to see more. But 50% of the video I can't hear, because the sound is so soft. And that's not because of my iPad, because I watch different videos also. And I have no problem hearing there vidios. Still love your videos, I also have EDS, POTS and Mast Cell activation syndrome.❤️❤️!!!
I have EDS and POTS as well, and possible MCAD! The sound issue may be my camera, it is SO old and outdated. But I just ordered a brand new one that is highly recommended for vlogging and it should be here next week!
Just wondering if you use a cervical pillow for road trips? My physical therapist recommended using one. It has really helped my neck strain from being in the car!
Hopefully the steroids continue to alleviate the inflammation and pain. I found the lidocaine blissfully took away all the pain, until it wore off. Blessings to your little family.
Kaitlyn Alvarado it isn't dirty, it has a ton of scratches on it because it's so old. But I have a brand new camera coming in soon, it should be here next week!
I just discovered your vlog today. You are extremely well spoken and very knowledgable! I guess you have to be just to manage your chronic illnesses. I tell my husband all the time it is a full time job to manage my chronic illness. Anyhow, I look forward to following your blog. Feel well!
I'm so glad your nerve block went ok Jaquie! When I saw the title I got nervous. I had a nerve block done on my occipital nerves and omg I fully blacked out from pain and had tears streaming down my face before blacking out. Turns out I had incredible amounts of damage for someone my age (17), so that's why it was so painful! I've now had a major surgery to try and fix or at least help my chronic daily migraines, that we believe were being caused by an illness called occipital neuralgia. I'm glad you, Judd, and Harlow get to spend time with family over the next few days! 😊 xxxx
Elisabeth fuckkkkkkkk I’m getting that nerve block in 6 hours I have I Occipital neuralgia. I’m going to a spine and rehabilitation doctor that all day every day does injections. I’ve been told with him I won’t feel much to anything but now I have your experience in mind... I’m scared shitless
I had a terrible experience with nerve blocks so I had to fast forward through most of that but I'm so proud of you for overcoming your fears and being flexible with the new plan your doctor recommended. Fingers crossed the relief continues! :)
Found your vlogs yesterday... thank you for sharing this journey! when we lived in New Mexico we were told to move close to the Mayo Clinic to have a chance of survival. SO the specialists for her were all here in Minnesota, so that's how we ended up here. She deals with some of the same things as you do, as well as the syncope, standing up too quickly is a bad thing for her.
I'm just a normal kid and I want to say that you handle illnesses so well. I couldn't even imagine it, as I cry when I get a normal cold. My sister has autism and there's so much she's good at. So I wish the absolute best for you in the future.
I have had this exact same procedure for MGs & degenerative neck disease. I had to have a disc replaced in my neck after it ruptured a few years ago.(Very awful experience as it was excruciating pain b4 & right after surgery till they leveled me out) I continue to get pain management plus I have RF treatments (cervical facet radio frequency neurotomy) instead of the blocks. This works for a longer time by shocking the nerves on each side instead of just numbing them. I also have built up scar tissue & inflammation in those areas. My neck & shoulders tighten & its difficult to sleep, travel, etc... When I get the RF's done it relieves the tension, my shoulders drop & it last a few months each time. Just thought I'd share this with you as you may run into this in the future. God Bless you always in all ways! Shalom
I just had this today too! Kinda thought it was crazy to see this pop up in my subscriptions!
Love watching your vlogs! Best way to end my day! Especially my Birthday 🙈❤ xxx
Molly Jepic X Clews happy birthday!
Jaquie Blake Thank you so much! And thank you for your vlogs! Your positivity is inspiring and so infectious! I love watching your adventures everyday ❤❤
To anyone considering occipital nerve blocks:
1. If you can, get one side done at a time. It's already disorienting enough with one shot!
2. Definitely stay laying down as long as they'll let you. Sit up in stages, and get help, especially if you have POTS.
I get these with just lidocaine (which does nothing on me) and dextrose (no steroid), every 7 weeks to manage crazy headaches (occipital neuralgia). Been getting nerve blocks for a year now. The first was the worst because you're fighting so much inflammation but they are easier to get after that. I've had nerve blocks in other areas go completely sideways but in general definitely worth the gamble in case they do provide relief.
I get nerve blocks in my lower back (6-8 injections) every 4 months. I can't get the ablation due to my hypermobility from EDS, my pain specialist is an anesthesiologist and she's wonderful! I hope yours lasts that long too.
Marieke D did they help you alot with the pain?
Glad your feeling better with your neck Jaq! That's so great! Have a nice relaxing rest of your night and stay strong💪❤
I've gotten Botox for TMJ/after disc dislocation surgery..caused by late bloomer jaw. Botox made me feel more fatigued and fluish for like 2-3 days. Not good w/ my ME/CFS immune dysfunction (either are steroids)...but really helped and needed for pain and tension. My neck goes out of place SO often!! It hurts and causes tension headaches, which I have chronic bouts of. I need to go to the chiropractor at least weekly...very frustrating. Goes out frequently at night.
It was so great to see this. Not many videos on Mayo Jacksonville. I am struggling whether or not I want to go to Mayo in Rochester for diagnosis or in Jacksonville. My only hang up is that Rochester was recently rated the best hospital in the country while Jacksonville didn't make the list at all (out of 20). We would be temporarily moving though to either location we chose and I just hate the cold!
just a question but what happened to oliver
U are thinking of the fry life totally different person
Hello! I recently had the same nerve blockers as you. I got 6 needles around my whole head to help my 3 months of continous migraine/dizziness/weakness. (ive been pretty much bed ridden the whole time and can only walk with help). Unfortunately, they didnt help at all, so for me they werent 'worth it' haha. But they do feel very weird and sort of painful when the needles in. I hope you have a good and safe trip there!
I have a lot of pain with my neck & shoulders too from EDS ( my neck was hyperextending during surgery before dx & dislocated shoulder sleeping) am epidural in my c spine seems to help BUT what helps my shoulder area where you pointed at for pain at the end was cupping therapy, I haven't noticed a difference from acupuncture but I have with cupping!
hey jaq have you ever had to take a daily inhaler like flovent it's a purple pinkish inhaler everyday
if you want to learn more about me and my life you can follow up with me on my email my email: punkinbutt303@gmail.com
Thanks! I am hoping for a nerve block. Good to know what happens.
Wow that neck treatment sounds like it could help my neck pain from fibromyalgia and migraines, I might ask my dr about whether it is an option. Also I love the funny faces Judd always pulls behind you when you are talking it always makes me laugh. You two are so cute and funny together I love how well he takes care of you. Well done at the hospital honey you did so well
Glad you are getting some relief! Enjoy your weekend.
I’m surprised you took a chance on inhaling helium, with your allergies and respiratory issues.
hey does anyone's foot or feet fall asleep on the floor or in the bathtub and the couch
im going threw a lot how do i shove the drs. to help me get better im tired of being a test product
I had an orthopedist tell me I had a collagen disorder but no ones ever actually tested me for anything because everyone's scared to test teenagers and I'm just really scared to ask someone to test me and just scared for my future with all my other illnesses
Sydney Hopp ye i've had stomach discomfort for about a yr now, its recently turned into stomach pain, i've been speculating its IBS buy im too scared to go to a doctor xD
I love your videos and how well trained Harlow is, I am currently looking into getting a puppy to train as an assistance dog and in the U.K. There's not many training programs, and if you could help give me some advice on things I would really really appreciate it. I'm so glad you have such great doctors and great treatment, here in the uk the kind of treatment you have is not available here in the U.K. (I don't know if it's possible to travel abroad for treatment but we so I could). Sending hugs and love from England 💕 x
she has some videos on this account about some of the things that you can train your service dog and what not
Rolling With Hannah - Life with invisible illness Just like Nicole mentioned, I have videos regarding service dogs! Look for my service dog 101 video. Unfortunately I'm not familiar with UK laws or organizations/trainers so I can't really help you there. But the resources I mention in that video may be useful, one website I discuss is internationally based. I also have a training tutorial playlist!
eeek you replied :')
Hey, Im a future assistance dog handler in England as well, there isn't much info on owner training and I didnt know we even could owner train until a few months ago. I'd advise you to check out the facebook page owner trained assistance dogs uk. Im sorry if you already knew this but I didnt and if I had I'd be future in the process of getting my dog right now.
Chronically Jaquie k
I'm supposed to get that procedure next week and I am so scared!
Hi! I enjoy watching your vlogs as we struggle with similar issues. I am a fellow medical zebra and it is nice to see someone spreading awareness. Also side note, Ehlers-Danlos is pronounced AY-lers DAN-los. Its a common mistake, and I used to say the same thing until I researched it!
Chonically Jessie I had no idea 😅 A lot of my doctors pronounce it the way I do though, so it gets confusing! I'll just stick with EDS. 😉
Just wondering if you know why you feel/hear cracking when the needle went through the inflammation? I had to get a cortisone shot, not sure if that's what you had, in my neck as well and I remember all of the cracking. I actually did pass out but it was from the anxiety of the needle coming out. It didn't work out too well for me but hopefully it works for you! Good luck!
Casey Rae from my understanding it's just because everything is so tight. But I'm not exactly sure. It is definitely unsettling to hear though!
The crunchy sound is cool and creepy at the same time. It doesn't hurt but it is intense.
do you happen to still have the name of the guy in philadelphia who could do an ablation? no rush but if you ever find it lmk :)
I had an occipital nerve block about 3 years ago, wasn't a pleasant experience. Hopefully it will help you!🙏🏻💙
I have had a picc line and had to travel while getting my meds, so I understand that struggle. You go through so much! You're so brave to even consider Botox! I would not!
Don't worry about what people say about your port, especially a doctor! You do you!
Claire Elizabeth Blake my doc didn't say anything about the port, I was worried for no reason. I love my doc! And it took him a while to convince me to do the Botox, and I needed some coaxing for the nerve block too. It wasn't that bad!
Jaquie Blake I'm so glad! Have a great day!
I've been to Mayo clinic a few times for my heart issues that no one can find out what's wrong! Its kind of scary since I collapse a lot. X'D
Bob's has the best cajun boiled peanuts! But next time y'all come up that way check out Smoking' D's BBQ on the opposite corner! I grew up right down the road from there!
Haha that’s a whole new take on “I’d die without you.” 😂
I love your videos, and can't wait to see more. But 50% of the video I can't hear, because the sound is so soft.
And that's not because of my iPad, because I watch different videos also. And I have no problem hearing there vidios.
Still love your videos, I also have EDS, POTS and Mast Cell activation syndrome.❤️❤️!!!
I have EDS and POTS as well, and possible MCAD! The sound issue may be my camera, it is SO old and outdated. But I just ordered a brand new one that is highly recommended for vlogging and it should be here next week!
Just wondering if you use a cervical pillow for road trips? My physical therapist recommended using one. It has really helped my neck strain from being in the car!
I've tried them in the past but honestly do not get much relief from them. I am so glad they help you though!
Hopefully the steroids continue to alleviate the inflammation and pain. I found the lidocaine blissfully took away all the pain, until it wore off. Blessings to your little family.
I thought the title had the word mayonnaise in it.
Still
Nice cooler...perfect place to store the next 24 hour urine test.
Please clean your camera lense!!! It's been dirty for a couple videos now didn't know if you knew😂
Kaitlyn Alvarado it isn't dirty, it has a ton of scratches on it because it's so old. But I have a brand new camera coming in soon, it should be here next week!
My Brother Has Autism
Ugh. Can't believe your internist office did that to you. What a joke.
I'm sorry, but soggy peanuts...no. Just...no.