Sometimes we have terrible days, and that's okay because... We are all human! I shared what I do to help get myself out of a negative mindset (I also give more techniques in my "Staying Positive with Chronic Illness" video: ruclips.net/video/mVnh_Z_EpEs/видео.html ). I would be interested to know what y'all do when you're feeling down? I hope today will treat y'all well, best wishes for whatever your adventures may hold! (:
Chronically Jaquie I️ watch a lot of TV and nap usually. A nap does wonder for my mindset, even if I️ don’t wake up feeling better (Narcoleptic here). I️ really hope you have a better day today :)
Chronically Jaquie to help me feel better I watch one of my favorite tv shows. Gilmore girls is a great feel good tv show that really helps me to feel better. So when Im feeling down i just turn on Netflix and start watching Gilmore Girls. I usually feel better in no time. I hope you are feeling better today! Sending love your way❤️💫
You got this Jaquie! I try to think of a time that I was at peace/happy. So I guess for you it would be recently when you were at Disney world and you felt like free and in control of yourself.. like when you could move around for once in a long time without help.. plus getting to enjoy Disney... and then I make bargains with myself.. I tell myself "If I get through this I'm going to treat myself by doing..." :) Prayer goes a long way too.
I sit down and pray, going through every item that is wearing my mind down. If it's a bad anxiety day, I go through every little thing that is bugging me until I feel some control over them, and peace. Then I curl up under my 6.5 foot teddy bear. Fluffiness is one of the best healers in the world.
When I'm having a rough day, I think "If it has to happen, then it has to happen to someone. I'm glad it happened to me, and not someone that is in a worse situation than me"
Judd is showing what a Real man does. He is indeed a keeper! I'm so sorry you're having a hard patch. We support you!! Best wishes from Chattanooga Tennessee!
I totally understand, we do the best we can to keep moving forward and some days there are bumps in the road. You are a mighty warrior! Sending you lots of love and positive healing thoughts. 💜
Thinking of you today. Just wanted you to know that after fighting with chiari symptoms for 12 years, I listened to you and became an advocate for myself. I'm scheduled with a chiari specialist next week! I have to drive 3 hours away but it will be so worth it! You made this happen. I had no idea I could fight for myself! Thank you for being you! And keep moving forward!
Thank you for this video, I had a major shoulder reconstruction a week and a half ago and within 3 days I was helping my parents with the groceries, going out with my boyfriend and taking my dog out for walks. I've been struggling with pain and have had terrible sleep but I've tried so hard not to inconvenience those around me but today I let myself go, I slept until 2:15pm and relaxed for the rest of the day. I felt extremely guilty until I watched this video. The road ahead of me is going to be long, with 6 weeks in a sling, a full year until I have full mobility in my dominant arm through vigorous rehabilitation all while studying nursing. I could never compare myself to what you're going though, not in the slightest, but I can still take your message and apply it to my own situation. It's okay to not always be okay. I'm thankful to have had my surgery after years of painful subluxations, but it's also okay too acknowledge what my body has gone through and that it may just take some time and some TLC to feel ready to take on the world. However for now it's completely fine to take the time that I need, listen to my body, and heal. Thank you Jaquie for your amazing lessons, inspiration and support for all warriors, Judd for being a beacon of understanding and warmth and Harlow for the unwavering loyalty, unconditional love and humour which is essential in the healing process. Kindest regards, Amy from Melbourne Australia
Thank you for the support! I know how hard it is to balance health and other life obligations. Especially when your body really NEEDS down time. Take care, I hope you heal well!
I love how Harlow watches over you and stays by you to make sure you are OK. Happy that you found a wonderful man that supports you and helps you any way that he can. Even when you have a bad day it is uplifting to watch how you still Keep Moving Forward and just work through it the way you need to. Rest is Best for a lot of things. Harlow is a golden dog. You picked a good one.
I'm sorry to hear you had a rough day yesterday. I've been having a rough time recently so I can definitely relate (my depression/anxiety have been acting up before my new medication kicked in). Taking care of yourself is so important. I hope you feel better today. I think of all the things I'm looking forward to - becoming a nurse, seeing my favorite comedian next year, etc. Knowing these things are in my near future makes me happy I have something to live for and staves off any negative thoughts. :-)
My boyfriend of 4 and a half years and I broke up yesterday... I'm not chronically ill but it was a terrible day for different reasons. Watching this and seeing others bad days, even though they are on completly unrealated topics, helps... Thank you for sharing your bad days.
I am so sorry to hear that :( I hope it was for the better! Yes, everyone has bad days. It may be for different reasons, but we still have our struggles. Stay strong!
We grew apart and realized we had different core goals in life. His was family, mine was career. Other things were stacked against us but that was at the heart of it... To be honest we had both been avoiding it for at lest 6 months... It was a ticking time bomb. Thank you so much for your kind words. I may not know you personally but you are a wonderful light and I am so thankful you share your life.
I’m sorry you had a bad day today (Friday). I could feel it through the screen. Your optimistic forward moving is inspiring. You’re doing the right thing to “listen to your body” and rest when you need to. Tomorrow is another day. I hope you feel better. Blessings to you, Jaquie. Thank you for pushing through to create a new vlog for us. 👚🌸🎀💕💗
These are the vlogs that I find most inspiring. The fact that you pick up the camera and show us reality, the strength that you show through this, means so much. A family death, along with family and personal mental and physical health issues have really been dragging me down. Thank you so much for always being there ❤️
I appreciate your honesty and real life perspective on your videos. Its nice to watch someone who isn't afraid to show the hard stuff. Positive thoughts and vibes headed your way!! You got this girl!!!
Hang in there! You are so brave, and so strong. I still struggle with the concept of allowing myself to accept the bad days, and you are such an inspiration! Also, Harlow's bum wiggle is amazing.
Praying and thinking of you today! You deserve a day off to recover!😊 Harlow is the best at cuddling and keeping you company!🐾 Sending love to you both❤️
I appreciate your vlog so much. I am a 62 year old RN who spent many a day torturing my body and now have chronic issues with my muscles and my diabetes and neuropathy. I'm still able to work as a telephone triage nurse but beyond that some days that's the only productivity I have in me. You've showed me that counting one's blessings is the way to get through those low times. I am in a good spot at this time when my pain is at a low and I can be more productive but I'm not pushing myself beyond what I can handle.
hope you're feeling better today, and maybe the following perspective will help. The symptoms you were experiencing at least were due to a treatment you chose which is going to help you feel better in the long term, as opposed to just a bad symptom day so it does actually have the potential to move you forward rather than just slow you down. I'm reminded of the story of the turtle and the hare, slow and steady wins the race! :)
Sorry you had a rough day; I know how that is because I have fibromyalgia and some days are worse than others. Yesterday and today, I have been constantly falling asleep, even though I have other things to do. Sometimes you just have to say “ Yup, today’s not so great. Just take it easy and hope tomorrow will be better!” Getting frustrated and upset really doesn’t help, so it’s preferable to accept it. Good luck to you, Jacquie.
Thank you so much Jaquie for helping me understand and cope with the ups and downs of chronic illness. You made me feel so much better. Hope you have a wonderful day tomorrow. TFS and take care...........
Thank you for your beautiful message. I really appreciate that you used some of your valuable energy to vlog today cause i look forward to seeing your videos specially when I'm having a bad day. I hope you realise what a difference you make to peoples lives. I am constantly inspired and motivated by your messages and your personal story that you generously share with us. thanks Liz from Aussie
I️ feel like you’re one of my friends because I️ had to come one and see how you were doing after ivig, glad to see that even though it was a hard day we can see that the rounds are slowly getting better, you’re always in my thoughts
Chronically Jaquie omg you replied! Just know that everyone on here is rooting for you and your success in every aspect of your life. Thank you so much for sharing your journey with us and helping to show people how disabilities don’t always have to be visible, you’re truly an inspiration!!
Things that help get me through my worst days are listening to music, watching RUclips, scrolling through facebook, but also making sure I get the proper rest. If my body has enough energy I love to draw, color, even dance around the house a little. I also somehow find laughter and comedy in every situation I go through and that helps me a LOT. Last, there are 5 words that got me through the past few years and they are...It could ALWAYS be worse.
I am sorry you had such a rough recovery day but so glad you have Harlow watching you so closely. And all the snuggles. Thankful your sweet husband is so wonderful.
Jaquie🌹💕, you are an amazing woman. I just love your videos. You are so strong, and determined, and have such great inspirational tips, on dealing with chronic illness. You go through so much, with such a positive mindset, and thats vitally important. I suffer with a lot of chronic issues, and some how, we make it through, each day. I also have an awesome hubby, who does so much, to make sure, things are, easier for me💕. I just love Judd, and Harlowe. Feel better sweet girl, thanks for helping me through, many hard days🖐💜.. Love and gentle hugs, from my part of snowy Canada❣
You are such an inspiration to us all . God love it ! In my family that was the greatest thing, a big hug and a "God love it " I have aunts that have passed that I miss my" God love it " from .
I snuggle with my pup and sleep as needed on really bad days. Hang in there Jaquie. It seems like day after ivig is always hard on u but remember u have an awesome husband and pup to help u out. We r here to send u our love and prayers to get thru day for new one tomorrow.
You are so amazing Jaquie! Keep up the great work but please get the rest that you need. Im dealing with a major flare up with my chronic illness. Lemmie tell you what you can do with that Sleep Paralysis: when you find yourself in the midst of that state in between dreams/sleep you can have a short lucid dream. Just try 'lifting out' of your body and to fly somewhere, anywhere. It works!!! I know I sound crazy but my nuerologist told me about this, and that I could look forward to sleep paralysis instead of living in fear of it. I to must sleep a lot, especially during a flare up. Can't help it. So that is a tip that really helped me and I hope it can help you as well. I'm praying that you feel better! Just so you know- what you are doing (vlogging) must be touching so many ppl. I know that hearing from you all the days that are possible make me feel so much better and not alone... I feel much less of the guilt that ppl like us tend to feel bc we can't live up to everyone else's expectations. You have taught me that I can be happy not worrying about everyone else (except my close loved ones) and that it's actually OK to listen to my body and give it what it needs. I've also learned to be more vocal about my invisible chronic illnesses to try and help ppl understand instead of laying in the bed in the dark day and night and withdrawing into a shell, afraid of what ppl may think. You have taught me so much more and you're way younger than I! Lol! I didn't really start dealing with anything until about 6 years ago, but dealing with this type of issues makes one wise beyond their years. Again, thank you so much for deciding to vlog in the first place. Don't get discouraged! We are all here for you and want the best for you and Judd and Hippo the best sweetie guh! Love you always!!!
Your a trooper jaquie you really are I was telling Janice that on her blog you guys are amazing really god loves people like you and Janice and me I’m legally blind I’m so happy you’re doing these vlogs jaquie
Yes those bad days, with chronic illnesses it can flare at any given time, even without a cause sometimes. Btw your dog is AMAZING, thank goodness for pets :)
I pray a lot! I count my blessings and I fail a lot. I get so down sometimes that I can't even pray 😳 I'm not near as strong as you. I love you and admire you so much!
I hate sleep paralysis!! Most people dont know what it is. I have narcolepsy as well. Its hard when I feel glued To the bed. I try not to judge myself , and cast all my cares on Him. I realize chronic illnesses dont play by rules And I cant figure it out. Which is ok.
I know that if I were in your situation, I wouldn't be as positive as you. Your such an amazing and positive person. Watching your videos makes me want to try harder to be a better person. Thank you.
You are so blessed to have Judd.I had the opposite,someone who woke me up hitting me in tbe middle of the night,when lack of sleep made me sick.But at least i'm out of that situation,still having to deal with him,but at least not in the house with me
I have my own treatment recovery days too. I take Humira and 24 hrs after my injection I feel terrible until the 48 hour mark sometimes a bit longer. I sleep a ton but feel like I didn't sleep, night sweats, my tachycardia is insane, dropping blood pressures. Strange dreams. Feeling fevered but not fevered and body aches. I have rheumatoid arthritis, eds, pots, and ncs. I have come to just except my recovery days. I've been on this treatment almost 3 years now. So it's just life at this point. My hubby and 3 kids are an awesome help to get me through. My 7 year old always makes sure I wake up and drink my fluids. My 10 yrs old son makes sure I always have an electrolyte drink next to my bed, and they shower me with gentle hugs and kisses while I sleep.
After having spent my night last night crumpled with anxiety depression and panic attacks ( a huge relapse) nd feeling like I want to cry all day today I watched this and cried tears of joy because you gave me that little kick thst I needed to remember the positive. I love you and your vlogs. Thank you so much.
Hi, I️ just wanted to make this comment because I️ have CVS, hypothyroidism and type I️ diabetes and you are the first person I️ know of on RUclips to talk about it (cvs)and live with it. Your videos are helpful when I’m sick in bed. It’s really hard sometimes and no one in my life can really understand what it’s like to not know if I’ll feel good or bad one day. You’re really amazing, your videos are helpful.
Hope you start to feel better as quickly as possible, I know this helps you but feel so bad that you feel horrible for the first few days :( hopefully soon you wont have these day nights
I don't have chronic pain, but my sister does. She struggles to get doctors to listen to her and treat her, but also doesn't advocate for herself the way she should or do things herself that could benefit her. I find how Jacquie advocates for herself inspiring. I love her positive attitude!
i watch Jaquie's videos because of my sister having many chronic illnesses, and while i don't have any health problems myself, i find it comforting in a weird way to watch her :) she reminds me of my sister i guess
I will I could be as positive as you. I have trouble dealing with even the smallest things. I think it’s because of all the times I’ve kept my big problems to myself. I go to God with my problems of course but sometimes I just can’t handle myself. But anyway, I’m hoping tomorrow is a better day for you. Being able to watch someone else with some of the same illnesses as me that is so positive helps. Sorry for the little rant!
Hoping today is a better day for you! I also was quite exhausted yesterday however I had no ‘reason’ (outside of the ‘norm’) , perhaps it was ‘sympathy pains/exhaustion’ Much love!
Your infusion could be like mine. I get infusions for lupus. It makes me worse before I get better. It is part of the treatment every time. I know we have different conditions and different meds. But infusion are rough in the first few days. It's part of the regimen. Your doing great pushing through. We have to take the bad with the good till the bad out weigh the good. Only time will tell. You and your body will know that time. I just had to give up on one med and go to another. Keep moving forward😬
I am thankful you listened to your body, and rested. I could see you improving with each video. Or at least becoming more rested! I do appreciate the way you share your life with honesty. But you know ... one question I have is: where did you learn to say y'all?
I have chronic interstitial cystitis. I had an experimental test surgery of an interstim and it made me feel like a completely new person. Unfortunately the test only lasts a week and if it works you have to get the permanent surgery. Well my insurance isn't approving the surgery. It's making me really depressed because now I'm back to total suffering daily and I know what it feels like to feel normal and they won't let me have it.
I am SO sorry. I know how frustrating insurance can be. KEEP APPEALING. Request a peer to peer. This sounds very beneficial for you and I pray you can get it done
For me I think of positive I think of all my sick friends that I wish I could take their stuff and put it on me I go through a lot as it is and I wouldn’t mind taking more on I have a lot not only my birth defect but my chronic illnesses
4:18 Of course not! I think that goes without saying. 5:46 Harlow is like: "Hey, my eyes!" 7:17 That is a good thing for everyone to keep in mind, including my dearest Cori and myself.
One day at a time.. My pup got a bath last night. Being a lab and an 8 month old, he loves getting in the tub, but not necessarily staying there. I'm thankful my youngest son helps, even tho he has POTS.
When I hav bad days, I like to think: I’ve made it thru 100% of bad days in th past and those are pretty good results ;) like u say I just keep moving forward!
Hey Meredith’s friend! I was her roommate in the disney college program. I absolutely adore gunner. I’ve bought him a couple of toys that he ripped to shreds haha he loved it. Is Harlow from the same litter as him? So nice to meet fellow chronic illness warrior and advocate 😊💪
I don’t have chronic illness (but mental illness) but a few weeks ago I had horrific sciatica. And even though it only lasted a couple of weeks, at its worst it was completely unbearable and I could hardly move at all. You’re not weak, just human.
I've been on IVIG for six years. I had to find the right dose and rate. I still have bad infusions, but overall I am much better off. I am transitioning to SCIG only because it works better with my work schedule. I am underweight from my mito and we haven't been able to keep up with my calorie needs w/ my TPN and tube feeds w/ my work (I'm a DVM and evidently I am burning a ton right now). SCIG is going to be hard but we are hoping to get my weight up w/my j tube fed formula change an TPN change as long as the amino acid shortage doesn't screw things up to bad.
We are still tweaking my IVIG regimen, glad to know your infusions improved over time. I really hope you can get the calories you need with your tube feeds and TPN!
I feel totally inadequate to make a medical suggestion, but here it is anyway..You said yesterday you could not obtain the IV Solumedrol, but could the clinic not administer it IM? Soulmedrol is so good for my joint pain. Pray you recover quickly. Your vlog helps me get out of the bed in the morning. God Bless.
That is what I was going to ask my doctor about next actually, but I may not need the extra does of Sol anyways. I will wait to see what my doc says (:
Can really see how much you are struggling.... I don't know much about where you like but can you like leave the door open so Harlow can toilet herself so you can just rest or is it likely an alligator will wander in your house? (I hear so many alligator stories lol). I really would love to send you something made from our business if you would accept. I'd like to gift you something to cheer you up a bit (and I understand your immunity and allergy issues as I have similar problems). If you would like a paracord collar or pull strap and some pull tabs I would love to send you something. You can check out our business page on Facebook, Little Kookaburra Design (I've had really bad flare lately so haven't been posting the new products that have been made unfortunately) but I really would love to have a chat to you about it
Ha, the alligator thing made me laugh. People in FL do have close encounters with them sometimes! We have them in the water behind our place, but they cannot come up. But leaving the door open makes me nervous about allergens and then there is also the heat. I will look into your shops (:
Chronically Jaquie I'd really love to send you a gift. Shoot me an email Muddypaws@live.com.au and I'd be more than happy to gift you a collar or pull strap (pink of course!) I heard you can't trust any body of water in Florida because of alligators and they can even be in your pools. I've seen sone terrifying videos too. I've been told they can hang out on peoples front lawns.... I feel like Florida is infested with alligators.... how true is this? Am I being trolled? Lol
The past week has been terrible. What I thought was a flu turned out to be Pneumonia..again. I get it every time it’s cold. But I’m not in the hospital anymore! I’m home and with my animals. Still don’t feel great. But staying strong! 💕
it's ok not to be positive 100% of the time. Goes back to being positive 100% of the time *facepalm* IDK how you do it to be that positive lol. It's so awesome
Sometimes when I'm having an off day on a weekday, I just wanna stay home, but I can't cause of school, and my parents are so strict;-; so when I'm at school, I'm just grumpy and blue the entire day, trying to look completely fine
I live in the uk and I am try to get a service dog but it is very hard to get one for my needs as I have mental issues that I need a service dog I keep getting upset because I don't have autism but I pass some of the criteria for a service dog but in the uk we don't have service dogs for mental illness😥hope your doing better today 😄
I am sorry :/ I am not totally familiar with laws regarding service dogs in the UK. Maybe you can find someone UK based to help you more? I think PSDs are great for some people, I wish they were more open to the idea in the UK. I wish you the best!
Honor Dickinson what it seems you need (by your comment) is a ESA dog which is an emotional support animal, they dont have to be dogs but they work in the same way ♥️
So glad that you are alright after ivig I have been diagnosed with pots and I'm wondering if you have any advice on it stay positive jaquie you can get through this👍
My best advice, for any illness, it so be your own biggest advocate! I talk about that more in my Answers video. But treatment is so individual to each POTSie, for me it was a lot of trial and error. Hang in there! A new diagnosis can be daunting, but it will lead to treatments that improve your quality of life. (:
Chronically Jaquie thank you it really means alot to me I got diagnosed because for the last 2 months I have not been able to walk very far before passing out
I have the SAME issue... It is rough. Hang in there! It takes time, but a good treatment plan will be found eventually. It helps if you have a good doctor, too.
Ugh, I was diagnosed with "probably" hypersomnia but I guess it's sometimes hard to tell between hypersomnia and narcolepsy, and the vivid dreams and sleep paralysis happen to me so often. I'm sorry you're dealing with that on top of the IVIG. Do you think it was related to the IVIG or just a coincidence?
Sometimes we have terrible days, and that's okay because... We are all human! I shared what I do to help get myself out of a negative mindset (I also give more techniques in my "Staying Positive with Chronic Illness" video: ruclips.net/video/mVnh_Z_EpEs/видео.html ). I would be interested to know what y'all do when you're feeling down? I hope today will treat y'all well, best wishes for whatever your adventures may hold! (:
Chronically Jaquie I️ watch a lot of TV and nap usually. A nap does wonder for my mindset, even if I️ don’t wake up feeling better (Narcoleptic here). I️ really hope you have a better day today :)
Idk what happened there, but I certainly didn’t use emojis. I’m gonna blame it on the newest iOS update haha
Chronically Jaquie to help me feel better I watch one of my favorite tv shows. Gilmore girls is a great feel good tv show that really helps me to feel better. So when Im feeling down i just turn on Netflix and start watching Gilmore Girls. I usually feel better in no time. I hope you are feeling better today! Sending love your way❤️💫
You got this Jaquie! I try to think of a time that I was at peace/happy. So I guess for you it would be recently when you were at Disney world and you felt like free and in control of yourself.. like when you could move around for once in a long time without help.. plus getting to enjoy Disney... and then I make bargains with myself.. I tell myself "If I get through this I'm going to treat myself by doing..." :) Prayer goes a long way too.
I sit down and pray, going through every item that is wearing my mind down. If it's a bad anxiety day, I go through every little thing that is bugging me until I feel some control over them, and peace. Then I curl up under my 6.5 foot teddy bear. Fluffiness is one of the best healers in the world.
When I'm having a rough day, I think "If it has to happen, then it has to happen to someone. I'm glad it happened to me, and not someone that is in a worse situation than me"
Stray Kittens ❤️
Stray Kittens 🐱 💕🙏
that's an amazing though. i'm going to remember this during my rough days. thank you
🙏🏻❤️
Awhh that's really heart warming
Judd is showing what a Real man does. He is indeed a keeper! I'm so sorry you're having a hard patch. We support you!! Best wishes from Chattanooga Tennessee!
Dianne Linam ideed a real man of God!
God bless this couple, she is amazing to keeping positive🙏💕
I totally understand, we do the best we can to keep moving forward and some days there are bumps in the road. You are a mighty warrior! Sending you lots of love and positive healing thoughts. 💜
Thinking of you today. Just wanted you to know that after fighting with chiari symptoms for 12 years, I listened to you and became an advocate for myself. I'm scheduled with a chiari specialist next week! I have to drive 3 hours away but it will be so worth it! You made this happen. I had no idea I could fight for myself! Thank you for being you! And keep moving forward!
That is amazing! I am so thrilled for you, prayers and best wishes that is goes well.
Thank you for this video, I had a major shoulder reconstruction a week and a half ago and within 3 days I was helping my parents with the groceries, going out with my boyfriend and taking my dog out for walks. I've been struggling with pain and have had terrible sleep but I've tried so hard not to inconvenience those around me but today I let myself go, I slept until 2:15pm and relaxed for the rest of the day. I felt extremely guilty until I watched this video. The road ahead of me is going to be long, with 6 weeks in a sling, a full year until I have full mobility in my dominant arm through vigorous rehabilitation all while studying nursing. I could never compare myself to what you're going though, not in the slightest, but I can still take your message and apply it to my own situation. It's okay to not always be okay. I'm thankful to have had my surgery after years of painful subluxations, but it's also okay too acknowledge what my body has gone through and that it may just take some time and some TLC to feel ready to take on the world. However for now it's completely fine to take the time that I need, listen to my body, and heal. Thank you Jaquie for your amazing lessons, inspiration and support for all warriors, Judd for being a beacon of understanding and warmth and Harlow for the unwavering loyalty, unconditional love and humour which is essential in the healing process. Kindest regards, Amy from Melbourne Australia
Thank you for the support! I know how hard it is to balance health and other life obligations. Especially when your body really NEEDS down time. Take care, I hope you heal well!
I love how Harlow watches over you and stays by you to make sure you are OK. Happy that you found a wonderful man that supports you and helps you any way that he can. Even when you have a bad day it is uplifting to watch how you still Keep Moving Forward and just work through it the way you need to. Rest is Best for a lot of things. Harlow is a golden dog. You picked a good one.
I'm sorry to hear you had a rough day yesterday. I've been having a rough time recently so I can definitely relate (my depression/anxiety have been acting up before my new medication kicked in). Taking care of yourself is so important. I hope you feel better today. I think of all the things I'm looking forward to - becoming a nurse, seeing my favorite comedian next year, etc. Knowing these things are in my near future makes me happy I have something to live for and staves off any negative thoughts. :-)
I also love looking forward to things! We are seeing Judd's sister in the next few weeks and that makes me really excited (:
My boyfriend of 4 and a half years and I broke up yesterday... I'm not chronically ill but it was a terrible day for different reasons. Watching this and seeing others bad days, even though they are on completly unrealated topics, helps... Thank you for sharing your bad days.
I am so sorry to hear that :( I hope it was for the better! Yes, everyone has bad days. It may be for different reasons, but we still have our struggles. Stay strong!
We grew apart and realized we had different core goals in life. His was family, mine was career. Other things were stacked against us but that was at the heart of it... To be honest we had both been avoiding it for at lest 6 months... It was a ticking time bomb. Thank you so much for your kind words. I may not know you personally but you are a wonderful light and I am so thankful you share your life.
Glad you're able to take the downtime you need and have the support you do to get you through the rougher days. Hope you're feeling better now!
this may be a weird thing to notice but im obsessed with your nails!! they are just so symmetrical and healthy :) get well soon xx
Ha, thanks! They used to be so brittle/break all the time. But with better nutrition they are much stronger.
Hi Jaquie, yes although there is tomorrow, I feel so sorry that you are having such an unwell day.God bless you.
I'm praying for you Jaquie.
I’m sorry you had a bad day today (Friday). I could feel it through the screen. Your optimistic forward moving is inspiring. You’re doing the right thing to “listen to your body” and rest when you need to. Tomorrow is another day. I hope you feel better. Blessings to you, Jaquie. Thank you for pushing through to create a new vlog for us. 👚🌸🎀💕💗
These are the vlogs that I find most inspiring. The fact that you pick up the camera and show us reality, the strength that you show through this, means so much. A family death, along with family and personal mental and physical health issues have really been dragging me down. Thank you so much for always being there ❤️
So happy this video helped you a bit! Best wishes to you as you continue on, sorry for your hard times. You are not alone!
I appreciate your honesty and real life perspective on your videos. Its nice to watch someone who isn't afraid to show the hard stuff. Positive thoughts and vibes headed your way!! You got this girl!!!
You are so brave and strong...your vulnerability is so real and inspiring. You Rock!!! Love you to pieces!!!
Hang in there! You are so brave, and so strong. I still struggle with the concept of allowing myself to accept the bad days, and you are such an inspiration! Also, Harlow's bum wiggle is amazing.
Praying and thinking of you today! You deserve a day off to recover!😊 Harlow is the best at cuddling and keeping you company!🐾 Sending love to you both❤️
I appreciate your vlog so much. I am a 62 year old RN who spent many a day torturing my body and now have chronic issues with my muscles and my diabetes and neuropathy. I'm still able to work as a telephone triage nurse but beyond that some days that's the only productivity I have in me. You've showed me that counting one's blessings is the way to get through those low times. I am in a good spot at this time when my pain is at a low and I can be more productive but I'm not pushing myself beyond what I can handle.
hope you're feeling better today, and maybe the following perspective will help. The symptoms you were experiencing at least were due to a treatment you chose which is going to help you feel better in the long term, as opposed to just a bad symptom day so it does actually have the potential to move you forward rather than just slow you down. I'm reminded of the story of the turtle and the hare, slow and steady wins the race! :)
Yes that is what I tell myself about the side effects - They are for a good reason! (:
Get well soon Jaquie! You are such a strong independent and inspirational person! You’re a huge inspiration to me!
Sorry you had a rough day; I know how that is because I have fibromyalgia and some days are worse than others. Yesterday and today, I have been constantly falling asleep, even though I have other things to do. Sometimes you just have to say “ Yup, today’s not so great. Just take it easy and hope tomorrow will be better!” Getting frustrated and upset really doesn’t help, so it’s preferable to accept it. Good luck to you, Jacquie.
aw thank you for even though you go through hard times, you turn it into advice for everyone else. you're the sweetest!
Praying that you feel better soon, Jaquie!
Thank you so much Jaquie for helping me understand and cope with the ups and downs of chronic illness. You made me feel so much better. Hope you have a wonderful day tomorrow. TFS and take care...........
Thank you for your beautiful message. I really appreciate that you used some of your valuable energy to vlog today cause i look forward to seeing your videos specially when I'm having a bad day. I hope you realise what a difference you make to peoples lives. I am constantly inspired and motivated by your messages and your personal story that you generously share with us. thanks Liz from Aussie
I'm sorry you're having such a rough time! I'll be praying for you.
Love you Jaquie, love how positive you are all the time
Praying tomorrow is a better day
"There are some days lilt today, but tomorrow is a new day." this will be my new quote for when I'm having an especially anxious day.
I️ feel like you’re one of my friends because I️ had to come one and see how you were doing after ivig, glad to see that even though it was a hard day we can see that the rounds are slowly getting better, you’re always in my thoughts
They are definitely getting better, I call it a success if we can manage it at home! (:
Chronically Jaquie omg you replied! Just know that everyone on here is rooting for you and your success in every aspect of your life. Thank you so much for sharing your journey with us and helping to show people how disabilities don’t always have to be visible, you’re truly an inspiration!!
For sure, a lot of people are cheering for Jaquie! Love from Brazil =)
Hope you are feeling better today. Harlow is the best. Sending prayers. ❤️
You are an inspiration. I wish I had the positive mindset you do on my hard days which far outnumber the good ones. Take care
I hope things are doing better today!! Keeping you in my prayers
Things that help get me through my worst days are listening to music, watching RUclips, scrolling through facebook, but also making sure I get the proper rest. If my body has enough energy I love to draw, color, even dance around the house a little. I also somehow find laughter and comedy in every situation I go through and that helps me a LOT. Last, there are 5 words that got me through the past few years and they are...It could ALWAYS be worse.
I am sorry you had such a rough recovery day but so glad you have Harlow watching you so closely. And all the snuggles. Thankful your sweet husband is so wonderful.
Jaquie🌹💕, you are an amazing woman. I just love your videos. You are so strong, and determined, and have such great inspirational tips, on dealing with chronic illness. You go through so much, with such a positive mindset, and thats vitally important. I suffer with a lot of chronic issues, and some how, we make it through, each day. I also have an awesome hubby, who does so much, to make sure, things are, easier for me💕. I just love Judd, and Harlowe. Feel better sweet girl, thanks for helping me through, many hard days🖐💜.. Love and gentle hugs, from my part of snowy Canada❣
You are such an inspiration to us all . God love it ! In my family that was the greatest thing, a big hug and a "God love it " I have aunts that have passed that I miss my" God love it " from .
I snuggle with my pup and sleep as needed on really bad days. Hang in there Jaquie. It seems like day after ivig is always hard on u but remember u have an awesome husband and pup to help u out. We r here to send u our love and prayers to get thru day for new one tomorrow.
From what I see, I really like Judd. You got lucky on that one. Treat him right. Good men are hard to find,
You are so amazing Jaquie! Keep up the great work but please get the rest that you need. Im dealing with a major flare up with my chronic illness.
Lemmie tell you what you can do with that Sleep Paralysis: when you find yourself in the midst of that state in between dreams/sleep you can have a short lucid dream. Just try 'lifting out' of your body and to fly somewhere, anywhere. It works!!! I know I sound crazy but my nuerologist told me about this, and that I could look forward to sleep paralysis instead of living in fear of it. I to must sleep a lot, especially during a flare up. Can't help it. So that is a tip that really helped me and I hope it can help you as well. I'm praying that you feel better! Just so you know- what you are doing (vlogging) must be touching so many ppl. I know that hearing from you all the days that are possible make me feel so much better and not alone... I feel much less of the guilt that ppl like us tend to feel bc we can't live up to everyone else's expectations. You have taught me that I can be happy not worrying about everyone else (except my close loved ones) and that it's actually OK to listen to my body and give it what it needs. I've also learned to be more vocal about my invisible chronic illnesses to try and help ppl understand instead of laying in the bed in the dark day and night and withdrawing into a shell, afraid of what ppl may think. You have taught me so much more and you're way younger than I! Lol! I didn't really start dealing with anything until about 6 years ago, but dealing with this type of issues makes one wise beyond their years. Again, thank you so much for deciding to vlog in the first place. Don't get discouraged! We are all here for you and want the best for you and Judd and Hippo the best sweetie guh! Love you always!!!
You are amazing and you inspire me every day to just keep going and find the good in the bad
You have a great outlook. So glad you have Harlow. Rest well
Agh i just love you. Always so positive and you just keep going. You are my inspiration! I hope you got a better nights sleep last night 😊💙
I hope today was much better! Glad you have that sweet pooch :)
im watching this on a trip and i see a pup who looks just like harlow!!! im sorry youre feeling bad jaquie, i hope you feel better soon!!
Your a trooper jaquie you really are I was telling Janice that on her blog you guys are amazing really god loves people like you and Janice and me I’m legally blind I’m so happy you’re doing these vlogs jaquie
Yes those bad days, with chronic illnesses it can flare at any given time, even without a cause sometimes. Btw your dog is AMAZING, thank goodness for pets :)
I pray a lot! I count my blessings and I fail a lot. I get so down sometimes that I can't even pray 😳 I'm not near as strong as you. I love you and admire you so much!
Prayer helps me immensely as well. I tend to do it every night before I go to sleep, but at other times as well.
Chronically Jaquie ❤❤❤❤
You are wonderful Jaquie. I like the way you take the life as it is and make the best from it.
I hate sleep paralysis!! Most people dont know what it is.
I have narcolepsy as well.
Its hard when I feel glued
To the bed.
I try not to judge myself , and cast all my cares on Him.
I realize chronic illnesses dont play by rules
And I cant figure it out. Which is ok.
I know that if I were in your situation, I wouldn't be as positive as you. Your such an amazing and positive person. Watching your videos makes me want to try harder to be a better person. Thank you.
Jaquie i hope that you are feeling better in the not too distant future. Hugs from Scotland xx
When I’m having a bad day I distract myself with sleep and my kitties.
You are so blessed to have Judd.I had the opposite,someone who woke me up hitting me in tbe middle of the night,when lack of sleep made me sick.But at least i'm out of that situation,still having to deal with him,but at least not in the house with me
Sorry you hand to go through that, you deserve much better
I have my own treatment recovery days too. I take Humira and 24 hrs after my injection I feel terrible until the 48 hour mark sometimes a bit longer. I sleep a ton but feel like I didn't sleep, night sweats, my tachycardia is insane, dropping blood pressures. Strange dreams. Feeling fevered but not fevered and body aches. I have rheumatoid arthritis, eds, pots, and ncs. I have come to just except my recovery days. I've been on this treatment almost 3 years now. So it's just life at this point. My hubby and 3 kids are an awesome help to get me through. My 7 year old always makes sure I wake up and drink my fluids. My 10 yrs old son makes sure I always have an electrolyte drink next to my bed, and they shower me with gentle hugs and kisses while I sleep.
Funny how these important treatments wear us down so much... But they are worth it in the end!
Harlow🐶 is golden.❤🐾
After having spent my night last night crumpled with anxiety depression and panic attacks ( a huge relapse) nd feeling like I want to cry all day today I watched this and cried tears of joy because you gave me that little kick thst I needed to remember the positive. I love you and your vlogs. Thank you so much.
Hang in there, you can do it!
Jaquie I appreciate your last post. As always we think you're super special. I know this doesn't help but you're a good girl.
Hi, I️ just wanted to make this comment because I️ have CVS, hypothyroidism and type I️ diabetes and you are the first person I️ know of on RUclips to talk about it (cvs)and live with it. Your videos are helpful when I’m sick in bed. It’s really hard sometimes and no one in my life can really understand what it’s like to not know if I’ll feel good or bad one day. You’re really amazing, your videos are helpful.
Hope you start to feel better as quickly as possible, I know this helps you but feel so bad that you feel horrible for the first few days :( hopefully soon you wont have these day nights
Hope you feel better soon,take care 💖💗💓💕
is it weird that i watch this amazing channel but i'm not a chronic warrior?
Not at all (: Anyone is welcome here, and people like you can help spread awareness for chronic illness.
Nirvaan Mehta No, i think its very very kind given the world today.
While I have health issues I’m not a chronic warrior either but I find her to be so inspiring. Especially when I’m having a hard day ❤️
I don't have chronic pain, but my sister does. She struggles to get doctors to listen to her and treat her, but also doesn't advocate for herself the way she should or do things herself that could benefit her. I find how Jacquie advocates for herself inspiring. I love her positive attitude!
i watch Jaquie's videos because of my sister having many chronic illnesses, and while i don't have any health problems myself, i find it comforting in a weird way to watch her :) she reminds me of my sister i guess
Hope your feeling better.. God will give you the strength to get through each day!
So true!
Hope you feel better soon. Dont over do yourself
I will I could be as positive as you. I have trouble dealing with even the smallest things. I think it’s because of all the times I’ve kept my big problems to myself. I go to God with my problems of course but sometimes I just can’t handle myself. But anyway, I’m hoping tomorrow is a better day for you. Being able to watch someone else with some of the same illnesses as me that is so positive helps. Sorry for the little rant!
*wish
I confide in God as well, but things can still be difficult. It's okay, and you're not alone
I am sorry you are having a bad day. I hope you have a better one tommow. God bless you. Thanks for everything.
Even those of us who don’t have chronic illnesses sometimes have bad days. I pray tomorrow’s better!
Hoping today is a better day for you! I also was quite exhausted yesterday however I had no ‘reason’ (outside of the ‘norm’) , perhaps it was ‘sympathy pains/exhaustion’
Much love!
Sometimes there are no clear cut reasons... It's just life! Hope today is easier for you (:
Stay strong Jaquie
Your infusion could be like mine. I get infusions for lupus. It makes me worse before I get better. It is part of the treatment every time. I know we have different conditions and different meds. But infusion are rough in the first few days. It's part of the regimen. Your doing great pushing through. We have to take the bad with the good till the bad out weigh the good. Only time will tell. You and your body will know that time. I just had to give up on one med and go to another. Keep moving forward😬
I am thankful you listened to your body, and rested. I could see you improving with each video. Or at least becoming more rested! I do appreciate the way you share your life with honesty.
But you know ... one question I have is: where did you learn to say y'all?
I am not sure lol
I love it!
I hope things are better today... 💜
Hope your day is better Jaquie.....
Sorry ypur having a rough day but super happy about the big difference from last time
I have chronic interstitial cystitis. I had an experimental test surgery of an interstim and it made me feel like a completely new person. Unfortunately the test only lasts a week and if it works you have to get the permanent surgery. Well my insurance isn't approving the surgery. It's making me really depressed because now I'm back to total suffering daily and I know what it feels like to feel normal and they won't let me have it.
I am SO sorry. I know how frustrating insurance can be. KEEP APPEALING. Request a peer to peer. This sounds very beneficial for you and I pray you can get it done
Praying for you guys God bless you both
Feel better babygirl...
For me I think of positive I think of all my sick friends that I wish I could take their stuff and put it on me I go through a lot as it is and I wouldn’t mind taking more on I have a lot not only my birth defect but my chronic illnesses
4:18 Of course not! I think that goes without saying.
5:46 Harlow is like: "Hey, my eyes!"
7:17 That is a good thing for everyone to keep in mind, including my dearest Cori and myself.
One day at a time..
My pup got a bath last night. Being a lab and an 8 month old, he loves getting in the tub, but not necessarily staying there. I'm thankful my youngest son helps, even tho he has POTS.
When I hav bad days, I like to think: I’ve made it thru 100% of bad days in th past and those are pretty good results ;) like u say I just keep moving forward!
I love that! (:
Hang in there Jaquie
Hey Meredith’s friend! I was her roommate in the disney college program. I absolutely adore gunner. I’ve bought him a couple of toys that he ripped to shreds haha he loved it. Is Harlow from the same litter as him?
So nice to meet fellow chronic illness warrior and advocate 😊💪
Sometimes I feel like a really weak person feeling like I can't live with the pain anymore. Living in pain constantly is really overwhelming.
It is extremely overwhelming, and draining. You are not alone!
I agree with you both.
I don’t have chronic illness (but mental illness) but a few weeks ago I had horrific sciatica. And even though it only lasted a couple of weeks, at its worst it was completely unbearable and I could hardly move at all. You’re not weak, just human.
Praying for you Jaquie.
I love you both..this is what I unconditional love really means 😚😚
I've been on IVIG for six years. I had to find the right dose and rate. I still have bad infusions, but overall I am much better off. I am transitioning to SCIG only because it works better with my work schedule. I am underweight from my mito and we haven't been able to keep up with my calorie needs w/ my TPN and tube feeds w/ my work (I'm a DVM and evidently I am burning a ton right now). SCIG is going to be hard but we are hoping to get my weight up w/my j tube fed formula change an TPN change as long as the amino acid shortage doesn't screw things up to bad.
We are still tweaking my IVIG regimen, glad to know your infusions improved over time. I really hope you can get the calories you need with your tube feeds and TPN!
I feel totally inadequate to make a medical suggestion, but here it is anyway..You said yesterday you could not obtain the IV Solumedrol, but could the clinic not administer it IM? Soulmedrol is so good for my joint pain. Pray you recover quickly. Your vlog helps me get out of the bed in the morning. God Bless.
That is what I was going to ask my doctor about next actually, but I may not need the extra does of Sol anyways. I will wait to see what my doc says (:
Can really see how much you are struggling.... I don't know much about where you like but can you like leave the door open so Harlow can toilet herself so you can just rest or is it likely an alligator will wander in your house? (I hear so many alligator stories lol). I really would love to send you something made from our business if you would accept. I'd like to gift you something to cheer you up a bit (and I understand your immunity and allergy issues as I have similar problems). If you would like a paracord collar or pull strap and some pull tabs I would love to send you something. You can check out our business page on Facebook, Little Kookaburra Design (I've had really bad flare lately so haven't been posting the new products that have been made unfortunately) but I really would love to have a chat to you about it
Ha, the alligator thing made me laugh. People in FL do have close encounters with them sometimes! We have them in the water behind our place, but they cannot come up. But leaving the door open makes me nervous about allergens and then there is also the heat. I will look into your shops (:
Chronically Jaquie I'd really love to send you a gift. Shoot me an email
Muddypaws@live.com.au
and I'd be more than happy to gift you a collar or pull strap (pink of course!)
I heard you can't trust any body of water in Florida because of alligators and they can even be in your pools. I've seen sone terrifying videos too. I've been told they can hang out on peoples front lawns.... I feel like Florida is infested with alligators.... how true is this? Am I being trolled? Lol
The past week has been terrible. What I thought was a flu turned out to be Pneumonia..again. I get it every time it’s cold. But I’m not in the hospital anymore! I’m home and with my animals. Still don’t feel great. But staying strong! 💕
Feel better!
it's ok not to be positive 100% of the time. Goes back to being positive 100% of the time *facepalm* IDK how you do it to be that positive lol. It's so awesome
Lol I was still struggling, yesterday was pretty hard. I was bummed all day, but try to make the best of things (:
Sometimes when I'm having an off day on a weekday, I just wanna stay home, but I can't cause of school, and my parents are so strict;-; so when I'm at school, I'm just grumpy and blue the entire day, trying to look completely fine
Praying for you.
I live in the uk and I am try to get a service dog but it is very hard to get one for my needs as I have mental issues that I need a service dog I keep getting upset because I don't have autism but I pass some of the criteria for a service dog but in the uk we don't have service dogs for mental illness😥hope your doing better today 😄
I am sorry :/ I am not totally familiar with laws regarding service dogs in the UK. Maybe you can find someone UK based to help you more? I think PSDs are great for some people, I wish they were more open to the idea in the UK. I wish you the best!
Thank you Jackie that has really cheered me up seeing u notice me I am a massive fan 😘
Honor Dickinson what it seems you need (by your comment) is a ESA dog which is an emotional support animal, they dont have to be dogs but they work in the same way ♥️
Fighting girl is you
So glad that you are alright after ivig I have been diagnosed with pots and I'm wondering if you have any advice on it stay positive jaquie you can get through this👍
My best advice, for any illness, it so be your own biggest advocate! I talk about that more in my Answers video. But treatment is so individual to each POTSie, for me it was a lot of trial and error. Hang in there! A new diagnosis can be daunting, but it will lead to treatments that improve your quality of life. (:
Chronically Jaquie thank you it really means alot to me I got diagnosed because for the last 2 months I have not been able to walk very far before passing out
I have the SAME issue... It is rough. Hang in there! It takes time, but a good treatment plan will be found eventually. It helps if you have a good doctor, too.
Ugh, I was diagnosed with "probably" hypersomnia but I guess it's sometimes hard to tell between hypersomnia and narcolepsy, and the vivid dreams and sleep paralysis happen to me so often. I'm sorry you're dealing with that on top of the IVIG. Do you think it was related to the IVIG or just a coincidence?
I don't think the IVIG did anything to my Narcolepsy, just one of those days
Is IVIG going to be one of those things that you'll need to do for the rest of your life, or just a few times once you get to your goal amount?
We are not sure yet, but we think if we stop it my body will regress whatever progress it makes