Hey y'all! Some of you were worried about the vlog dates. Unless the year or month is wrong, don't worry. I am not feeling well and vlogging in my spare time to cheer myself up/ I usually just pick the date I feel fits best, but it can be choppy when I start and stop on different days or I choose not to pick up the camera at all. I'm still giving MCAD my hardest fight though, and I love it when y'all join me! Have a great Wednesday!
Girl you have a hard life . Stay strong. I can’t believe u don’t have a private room. I think sometimes I can’t handle my chronic illness’s anymore without screaming. You make me want to be stronger. Thank you. Happy Halloween!!!!🎃🎃🎃🎃🎃
Thumbs up for the Benadryl drip!! 👍🏼👍🏼👍🏼👍🏼 So so happy that you are noticing a difference in your symptoms......great news, Jaquie!!! Continued prayers for you. 🙏🏻🙏🏻❤️❤️
Hey Jacquie, so glad to hear that the CDI seems to be working for you. I commented several weeks back suggesting it and not knowing if you had ever heard of it or considered it. I am so happy that you were able to start it and that it is working well for you! Anyways, I was able to continue CDI at home and I hope your doctors and your home health will agree to it and be able to order it for you at home. It is very easy to have it in place as part of your protocol and stop/start it as needed. I hope you continue progressing and healing and that the CDI does not keep you from being able to be discharged home as soon as your body is ready!
I'm so glad you found a treatment to help with your flare up! The hospital I got to has worked really hard over the past few years to increase the continuity in care for complex patients. That means, when I am hospitalized it's always on the same floor with the same nurses that have known me for quite a while now. All of the rooms are very nice and private. I didn't realize not all units are like that. Thank goodness your roomate is nice! Take it easy so you don't rebound! When I've been sick and really start to feel better, I'm really bad about doing as much as I can at once because in the past, I've not known when I like feel well enough again to do those things. Hugs and healing thoughts are but headed your way! Keep up the good work!
So glad the continuous Benadryl drip is working!!! I hope you continue to get better and can go home soon. I know its hard, But keep fighting, you got this! ♡♡♡
Your self advocating video helped alot. After years of doctors not taking my pain seriously bc Im young, I’ve finally got team who is helping. Crazy to think that all this time all they had to do was an mri to figure out I have several slipped discs throughout my spine and that they think an autoimmune disorder is probably causing my degeneration. Thank you for your videos, they really make me less afraid and more positive.
It's a shame to hear you have a lot going on lately, but it's really good to hear that things are picking up when you look at the bigger picture. It's awesome to hear that the CDI is having a positive influence on your body! Might not be a useful solution to your day to day life, but looks like it might be a stable idea for hospital stays? I posted a comment a little while back on the video you uploaded before your foot surgery, about how I've decided to start vlogging my experiences after watching your videos. Lately I've had an influx of bad health myself and got quite scared about what the future holds for me. I've been referred to a Neurologist, and I get a feeling I'm not gonna get answers for a long time, but at least I'm starting on my journey. I've never really spent too long in hospital at any given time, and the prospect of staying overnight (I'll probably have to have a sleep study or live-in study) spooks me. While your videos are a small snippet of hospital life, seeing how it IS possible to stay positive while in hospital, even if you're going through a hard time is really putting me at rest. Now I only have to tackle my fear of xray/MRI/CT scanning type machines, and then I think I'll have most of my worries manageable. I'm not scared about the prospects of using tools to help me live, like ports and wheelchairs and such. Thank you for posting your videos. I don't go through anything like you do, but I can still find safety and comfort in them. Please, do not stress yourself to ensure we have content. Rest where you need to. Thank you, Jaquie. - Kaise
🙌❤️ So happy you are getting the tools to better manage your flairs and to just make it easier on your body! The continuous benydril is definitely piece of mind, I think that played a part in you having a shared room, Sounds like your team now would really fight for you if not. Glad you got yummy food!
I just watched the video about what happens when the tears fall, something like that. By the end, my tears were flowing too. Thank you Jacquie for sharing such an emotional private moment. Many people look to you, as their Inspiration, and you showed them how you recover from frustration. ✌🏼✌🏼✌🏼
Generally speaking nothing should ever be piggybacked onto IVIG. Some fluids are not even compatible to run pre-post so maybe just check for next time as every ivig brand I’ve been on you are not allowed to piggyback, even saline.
Hi Jaquie I’m in oz i love your channel because I’m in a wheelchair myself and I’m training my dog to be a service dog too. I can relate to the pain that you get Thankyou for your channel
I am so happy the CDI is working and giving you some relief. I don't like the idea of you sharing a room but I guess if you have to at least you have a nice room mate. Take care.
That hospital seems 1000x nicer than the one in my area, you can't go anywhere without seeing beds in the halls. People screaming from their drug withdrawals, police escorts for the inmates. So glad to not see that where you are!
I hear you singing praise for Benadryl and here I am with hives (mild) and allergic to Benadryl. Waiting on my doctor to call me in some other meds for it
Hope the hospital let you have a little bit of fun today! Did Harlow dress up for you? I'm glad your team is finding new things that work for you! I have a question, is it hard for you to get all the epipens you need as I know you use quite a few. My daughter's first epipen was prescribed in beginning of October for angioedema and I checked at the pharmacy today and they said they are only up to the ones on the list prescribed beginning of September. Fortunately she hasn't had anything life threatening, although her eyes, lips, and tongue did swell up. But I worry about those who do have more severe life threatening throat closing from aniphaxis or angioedema and what they do during this shortage.
You sound so much stronger today! So far I chew up Benadryl for my reactions , try to stay out of hospital ! Allergic reactions....Trying to stay out of hospital and stay alive, thank the Lord for my Xolair !!
I hope Benadryl drips work for you... I once had a nurse who literally asked us what we should do about me having an allergic reaction. My nursing student friend literally screamed, “BENADRYL!!!”
I had a quick question my son is on the same product name and we were told the immuoglobin can not be run with it only before and after. Did I hear correctly you were running both concurrently? Or through different sites?
Bless your heart!! It seems you have SO MANY uphill struggles & yet you seem to keep a darn good attitude about it!! Amazing!!! Judd & your mom are SO MARVELOUS!!! What blessings they TRULY are!! And, of course, we all know Harlow is ALWAYS fabulous support!!..I sure HOPE they get you all fixed up so you can go home REAL soon! Take care & thank you for spreading awareness! You're a REAL trooper!!!!
What kind of specialist treats your MCD? I'm thinking this is my newest addition in my long line of health issues. PCM is clueless about it, so sending me to derm first because of the burning face. But I feel like it's going to be a waste of time. So glad the benadryl IV drip is helping you!
Would hydroxazine work in place of the benedryl...they are similar medications....when taking benedryl daily long term then stopping it can trigger symptoms such as post nasal drip ...watery eyes and some mild drainage from the ears ....
That cannot be IV, I use the liquid through my tube but it only handles minor symptoms( little rashes, flushing, itchiness, etc.) Not as effective as IV Benadryl
@@ChronicallyJaquie ...... Actually i have had it per IV ....but it also slows down the digestive track which may not be so good for you ...and yes the benedryl works better for the allergy symptoms ....let's hope they find a solution to the shortage ...
So happy that the IV benadryl is helping, that is awesome. Oohh olive garden gnocchi soup is yummy. Hopefuly you will be able to go home soon with a great plan of action. Have a blessed day.
I'm glad the benadryl drip is working so well for you! And that you have a wonderful service pup and family for support. I'm really surprised they put you in a shared room though. I've worked as a healthcare assistant in the UK in the NHS and if someone has MRSA they have to have their own room and the room has to be deep cleaned when they leave. All linen and rubbish has to go in a separate bag. And if someone is immunocompromised, generally they have their own room too.
Hi Jaquie, I'm not that concerned with the dates. It's just nice to see you and here about the information you share. The fact that you have been vlogging is amazing. Ellie is adorable. She was cute riding down the hallway on your bed. :) Your Olive Garden dinner looked delicious.
Hey y'all! Some of you were worried about the vlog dates. Unless the year or month is wrong, don't worry. I am not feeling well and vlogging in my spare time to cheer myself up/ I usually just pick the date I feel fits best, but it can be choppy when I start and stop on different days or I choose not to pick up the camera at all. I'm still giving MCAD my hardest fight though, and I love it when y'all join me! Have a great Wednesday!
No worries Jacque ...i just enjoy your videos ...the dates dont matter.....🙂
Chronically Jaquie Dates don't matter, knowing how you are does.
Aww pinky sounds lovely! Hi pinky!! So glad your picking up miss jac jac! Sending you lots of love!
Girl you have a hard life . Stay strong. I can’t believe u don’t have a private room. I think sometimes I can’t handle my chronic illness’s anymore without screaming. You make me want to be stronger. Thank you. Happy Halloween!!!!🎃🎃🎃🎃🎃
Thumbs up for the Benadryl drip!! 👍🏼👍🏼👍🏼👍🏼 So so happy that you are noticing a difference in your symptoms......great news, Jaquie!!! Continued prayers for you. 🙏🏻🙏🏻❤️❤️
In the hospital right now because of my urea cycle disorder. Stay strong jacquie!
Hey Jacquie, so glad to hear that the CDI seems to be working for you. I commented several weeks back suggesting it and not knowing if you had ever heard of it or considered it. I am so happy that you were able to start it and that it is working well for you! Anyways, I was able to continue CDI at home and I hope your doctors and your home health will agree to it and be able to order it for you at home. It is very easy to have it in place as part of your protocol and stop/start it as needed. I hope you continue progressing and healing and that the CDI does not keep you from being able to be discharged home as soon as your body is ready!
Hi Pinky!!
I'm so glad you found a treatment to help with your flare up! The hospital I got to has worked really hard over the past few years to increase the continuity in care for complex patients. That means, when I am hospitalized it's always on the same floor with the same nurses that have known me for quite a while now. All of the rooms are very nice and private. I didn't realize not all units are like that. Thank goodness your roomate is nice! Take it easy so you don't rebound! When I've been sick and really start to feel better, I'm really bad about doing as much as I can at once because in the past, I've not known when I like feel well enough again to do those things. Hugs and healing thoughts are but headed your way! Keep up the good work!
So happy you are moving along faster this time! Big squeeze and tons of love and healing to you. You are so special and precious ❤️🙏🏼
I finally watched all your vlogs and is now up to date. I love them!!
Such good news about the Benadryl infusion 👍👍👍 Hopefully you will be able to go home soon. All the best! 💗
So glad the continuous Benadryl drip is working!!! I hope you continue to get better and can go home soon. I know its hard, But keep fighting, you got this! ♡♡♡
Well I'm in the emergency room for my gastroparesis. Please pray for me.
Crystal Novak 🙏🙏❤️
You are in my prayers, crystal. I've been exactly there.🌼🌺🌻🌹🌷🌸💐
Crystal Novak Oh no! 🙏🏼🙏🏼🙏🏼🙏🏼
*hugs* Hang in there.
🙏🙏🙏🙏🙏🙏🙏🙏🙏
Your self advocating video helped alot. After years of doctors not taking my pain seriously bc Im young, I’ve finally got team who is helping. Crazy to think that all this time all they had to do was an mri to figure out I have several slipped discs throughout my spine and that they think an autoimmune disorder is probably causing my degeneration. Thank you for your videos, they really make me less afraid and more positive.
I just noticed that Ellie's inner ear fabric matches your blanket! That's super cute coincidence
It's a shame to hear you have a lot going on lately, but it's really good to hear that things are picking up when you look at the bigger picture. It's awesome to hear that the CDI is having a positive influence on your body! Might not be a useful solution to your day to day life, but looks like it might be a stable idea for hospital stays?
I posted a comment a little while back on the video you uploaded before your foot surgery, about how I've decided to start vlogging my experiences after watching your videos. Lately I've had an influx of bad health myself and got quite scared about what the future holds for me. I've been referred to a Neurologist, and I get a feeling I'm not gonna get answers for a long time, but at least I'm starting on my journey. I've never really spent too long in hospital at any given time, and the prospect of staying overnight (I'll probably have to have a sleep study or live-in study) spooks me. While your videos are a small snippet of hospital life, seeing how it IS possible to stay positive while in hospital, even if you're going through a hard time is really putting me at rest. Now I only have to tackle my fear of xray/MRI/CT scanning type machines, and then I think I'll have most of my worries manageable. I'm not scared about the prospects of using tools to help me live, like ports and wheelchairs and such.
Thank you for posting your videos. I don't go through anything like you do, but I can still find safety and comfort in them. Please, do not stress yourself to ensure we have content. Rest where you need to. Thank you, Jaquie.
- Kaise
Jaquie, you have such a positive person. Praying for good health and healing. LOVE and PRAYERS ALWAYS from Gainesville Florida.
So very happy you are managing your symptoms. You are a warrior!
🙌❤️ So happy you are getting the tools to better manage your flairs and to just make it easier on your body! The continuous benydril is definitely piece of mind, I think that played a part in you having a shared room, Sounds like your team now would really fight for you if not. Glad you got yummy food!
I just watched the video about what happens when the tears fall, something like that. By the end, my tears were flowing too. Thank you Jacquie for sharing such an emotional private moment. Many people look to you, as their Inspiration, and you showed them how you recover from frustration. ✌🏼✌🏼✌🏼
Generally speaking nothing should ever be piggybacked onto IVIG. Some fluids are not even compatible to run pre-post so maybe just check for next time as every ivig brand I’ve been on you are not allowed to piggyback, even saline.
Hi Jaquie I’m in oz i love your channel because I’m in a wheelchair myself and I’m training my dog to be a service dog too. I can relate to the pain that you get Thankyou for your channel
I am so happy the CDI is working and giving you some relief. I don't like the idea of you sharing a room but I guess if you have to at least you have a nice room mate. Take care.
That hospital seems 1000x nicer than the one in my area, you can't go anywhere without seeing beds in the halls. People screaming from their drug withdrawals, police escorts for the inmates. So glad to not see that where you are!
I hear you singing praise for Benadryl and here I am with hives (mild) and allergic to Benadryl. Waiting on my doctor to call me in some other meds for it
Hope the hospital let you have a little bit of fun today! Did Harlow dress up for you? I'm glad your team is finding new things that work for you! I have a question, is it hard for you to get all the epipens you need as I know you use quite a few. My daughter's first epipen was prescribed in beginning of October for angioedema and I checked at the pharmacy today and they said they are only up to the ones on the list prescribed beginning of September. Fortunately she hasn't had anything life threatening, although her eyes, lips, and tongue did swell up. But I worry about those who do have more severe life threatening throat closing from aniphaxis or angioedema and what they do during this shortage.
Hi Guys, just saw you're having terrible weather. Thinking of you both, hoping you're home Jaquie or close to it. Be Safe, Be Well. 😁🐱👍💕
You sound so much stronger today! So far I chew up Benadryl for my reactions , try to stay out of hospital ! Allergic reactions....Trying to stay out of hospital and stay alive, thank the Lord for my Xolair !!
I hope Benadryl drips work for you... I once had a nurse who literally asked us what we should do about me having an allergic reaction. My nursing student friend literally screamed, “BENADRYL!!!”
Benadryl is a miracle drug!!
Do you feel the xolair shots and the Ivig are the two best items in your arsenal?
Did you change rooms? The one where Janiece came to see you there were two beds.
Where did u get the weighted blanket from i am looking at getting one myself
I had a quick question my son is on the same product name and we were told the immuoglobin can not be run with it only before and after. Did I hear correctly you were running both concurrently? Or through different sites?
Optimism is always a good thing. Hope you can go home soon.
Trying to get inspired by you normally works but I’m in to much pain
Lol i love that chuckle about harlow and skype lol makes me laugh lol thankyou
I KNEW it would work. It has been a life line for me.
I know how it is to be in the hospital I just got discharged from the emergency room
So glad the drips are helping!
Bless your heart!! It seems you have SO MANY uphill struggles & yet you seem to keep a darn good attitude about it!! Amazing!!! Judd & your mom are SO MARVELOUS!!! What blessings they TRULY are!! And, of course, we all know Harlow is ALWAYS fabulous support!!..I sure HOPE they get you all fixed up so you can go home REAL soon! Take care & thank you for spreading awareness! You're a REAL trooper!!!!
Happy Halloween 🎃👻🎃👻🎃
What kind of specialist treats your MCD? I'm thinking this is my newest addition in my long line of health issues. PCM is clueless about it, so sending me to derm first because of the burning face. But I feel like it's going to be a waste of time.
So glad the benadryl IV drip is helping you!
An immunoligist usully treats Mast cell, amount other things.
I'm really surprised they've never offered you a benadryl drip in your flares before, but I am so glad it's helping for you!
I’m so relieved to see you looking much better since last vlog!! I am hopeful for you too!! ♥️ to you and your fam 🌻🌻🌻
I am so thankful that the IV Benadryl is working! G-d be praised, Jaquie! xxxxxxxxxxxxxxxx
Would hydroxazine work in place of the benedryl...they are similar medications....when taking benedryl daily long term then stopping it can trigger symptoms such as post nasal drip ...watery eyes and some mild drainage from the ears ....
That cannot be IV, I use the liquid through my tube but it only handles minor symptoms( little rashes, flushing, itchiness, etc.) Not as effective as IV Benadryl
@@ChronicallyJaquie ...... Actually i have had it per IV ....but it also slows down the digestive track which may not be so good for you ...and yes the benedryl works better for the allergy symptoms ....let's hope they find a solution to the shortage ...
Chronically Jaquie
The IV Benadryl also helps me with nausea
I know insactley what you are going through
So happy that the IV benadryl is helping, that is awesome. Oohh olive garden gnocchi soup is yummy. Hopefuly you will be able to go home soon with a great plan of action. Have a blessed day.
Hope you're home soon! 🎃🎃
can you become immune to Benedryl ?
Yeah, you can build up a tolerance to it. And there's the possibility of psychological/neurological issues with long term use
I'm happy for you about the good news.
7:40 Are you going to teach her? ;-)
I'm glad the benadryl drip is working so well for you! And that you have a wonderful service pup and family for support. I'm really surprised they put you in a shared room though. I've worked as a healthcare assistant in the UK in the NHS and if someone has MRSA they have to have their own room and the room has to be deep cleaned when they leave. All linen and rubbish has to go in a separate bag. And if someone is immunocompromised, generally they have their own room too.
Are you sure it's a shared room? I only see one bed
Oops I didn't watch the whole thing
Hope you feel better soon. Praying for you guys 🙏🏻👍💪
I'll be praying for you🙏🏼🙏🏼❤️
Hi Jaquie, I'm not that concerned with the dates. It's just nice to see you and here about the information you share. The fact that you have been vlogging is amazing. Ellie is adorable. She was cute riding down the hallway on your bed. :) Your Olive Garden dinner looked delicious.
Getting concerned about you. It’s been 5 days since this vlog. I hope all is ok.
xoxoxoxoxoxoxo
Harlow is soooo lovely. Keep your chin up, Jacquie. You are doing so well :-)